Stranger Danger

Part of teaching children about safety includes teaching them about the potential danger of strangers. Teaching a child on the autism spectrum about “stranger danger” and how to react in a dangerous situation is complicated by social and communication difficulties. However, it is particularly important given the high rate of autistic children who wander away. Additionally, children on the autism spectrum are more likely to be alone than with friends as they get older and more independent, thus creating more opportunity for abduction or assault.

Begin by teaching your child who is a stranger.

A simple definition of “stranger” is someone who is not well-known to the child and the child’s family. Just because someone knows your child’s name does not make them familiar. Similarly, if the stranger tells your child his name or wears a name badge, it does not mean the person is no longer a stranger. You should review with your child who you consider to be “well-known,” and perhaps have pictures of them to review. (Visuals are often helpful in teaching children on the autism spectrum.) You might want to include examples of people who are not well-known to your family, such as those you might pass on the street. Make sure your child understands that a stranger doesn’t necessarily look “strange.” The stranger may dress and look like everyone else.

Also, make sure your child realizes that strangers are also people that your child may interact with online, such as through online video games or chat rooms. Your child should never give out his or her real name, age, and location to anyone online. Often children, particularly children on the autism spectrum, think that they are “friends” with online gaming partners or chat room participants. It is important that your child understands that these individuals are strangers and may not be who they appear or claim to be. Autistic individuals are often very trusting, so this may not be an easy concept to understand.

Distinguish between “safe” strangers and everyone else.

Safe strangers are people your child can ask for help if your child is lost, scared, or threatened. These include uniformed police officers, firemen, and security guards, teachers, and store clerks behind a cash register. A safe stranger will never try to harm your child. If a “safe stranger” ever tries to hurt your child, including improper touching, your child should not consider the person “safe” any longer. When you are in the community with your child, practice pointing out “safe strangers” so your child recognizes one when and if he or she needs to rely on one for help.

Teach your child what to do when approached by a stranger.

Many parents simply teach the rule: “Don’t talk to strangers.” But this simply isn’t enough. For one thing, there are times when it is okay to talk to strangers, for example when the stranger is with a trusted adult, such as mom or dad, or when the stranger is a safe stranger, such as the clerk at McDonalds or a security guard if the child is lost.

Teach your child never to accept candy or presents from a stranger, not to approach a car of someone if they are not sure who is in the car and that the person is “safe,” and never to walk off with a stranger. Though you have likely spent countless hours teaching your child to respond when spoken to, it is important to teach your child that it is sometimes okay not to respond. If your child feels unsafe, he or she should run away from the stranger. If your child is verbal, teach your child to say “NO!” Additionally, saying, “This is not my mom/dad” or making other noise will usually draw the attention of other adults in the area who can help or who will at least deter the stranger from approaching your child. Whenever possible, your child should run to a public place and ask for help from a “safe stranger.”

Role play different scenarios to help your child prepare for situations that are likely to occur. You may also want to use Social Stories™ to help your child learn about stranger danger. Some of the situations you may want to review include online interactions, someone looking for help finding a lost dog or asking for directions, or someone offering your child a ride. Teach your child warning signs of danger, such as an adult asking your child to disobey his or her parents or to act without permission, someone asking your child to keep something a secret, or anytime an unknown adult asks a child for help. Also practice how your child will communicate with the “safe stranger,” taking your child’s verbal abilities into account.  Even children who are typically very verbal may have trouble communicating when under stress. At least having a form of identification to show will be a start, particularly if it mentions that your child has a diagnosis of Autism Spectrum Disorder (ASD) and may have trouble communicating.

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Education After High School: What are the Options?

More and more students on the autism spectrum are deciding to pursue education beyond high school. One reason for this is the recognition by post-secondary institutions that autistic students can be not only qualified, but also successful students, particularly when given needed supports. As a result, there are more and more post-secondary programs to choose from.

Most people think of traditional college when they think of post-secondary education, but there are other options, ranging from pre-college programs to vocational training to personal development classes offered in the community. The paragraphs below outline some of the most popular programs. Accommodations (known as “academic adjustments”), which may be required under Titles II and III of the Americans with Disabilities Act of 1990 (ADA) or Subpart E of Section 504 of the Rehabilitation Act of 1973 (Section 504), as well as any additional supports that may be available to college students, are discussed in separate articles.

Pre-College Programs:

With more and more students with disabilities wanting to go to college, a number of programs designed to prepare students for the experience have been developed. Sometimes these programs are available to students while they are attending high school; others are specifically designed for students who are high school graduates.

These programs vary in how they accomplish the objective of preparing students for higher education. Some are residential and help teach students about living in a dorm – from getting along with roommates (and how to resolve the inevitable conflict), to self-care (using community bathrooms, for example), to getting up on time for class. Others focus on building self-advocacy skills, including communicating with teachers about the need for accommodations, standing up for oneself in a social context, and self-regulation. Executive functioning and organizational skills may be stressed, particularly how to remain focused in a class when assignments may be long-term or there are less frequent tests to gauge whether or not the student understands the material. Academics may even be a part of the program. Programming may be provided by college professors, psychologists, peers, or other educational and medical professionals.

Available programs are included in the Resource Directory of the CAR Autism Roadmap™, under the category of Education – College Autism Support. When contacting a program, pay attention to the specific services offered, who delivers instruction, the location of the program, and particularly the program cost, as some can be quite expensive.

Traditional Four-year Colleges or Universities:

Typically students attend a traditional four-year college or university to receive a bachelor’s degree. A bachelor’s degree is a degree conferred on a student which indicates that he or she has successfully completed the coursework related to a particular field of study as required by the college or university. The requirements for receiving the degree may vary at each institution, as will the degrees conferred. Many colleges and universities offer a Bachelor of Arts (BA) degree as well as a Bachelor of Science (BS) degree. Within these two programs, a student may have a particular major of study, such as English or Political Science (typically earning a BA) or Mechanical Engineering or Chemistry (typically earning a BS). A given college or university may have dozens if not close to a hundred different majors to choose from.

Historically, the difference between a “college” and a “university” was whether the school conferred degrees in more than one area. A “university” is made up of multiple colleges within the university, such as the Business College, College of Arts and Sciences, or the Engineering College. In the United States, the terms “college” and “university” are often used interchangeably. Probably the biggest difference between a school designated as a “college” and one which is a “university” is the size of the institution. Typically, universities are much larger than colleges; however there are many different sized universities, ranging from a few thousand students to more than 10,000 students.

Students pursuing a bachelor’s degree may have the option of living on the college campus; some schools may even require this for the first year or two. Other schools allow students to commute from home when possible or to live in nearby off-campus housing. Housing can be a major concern related to the college experience for many autistic students due to social difficulties, developing life skills, or academic concerns.

Because of this, some colleges and universities are offering residential support programs to students with disabilities or accommodations outside of what the ADA and Section 504 require. For example, students may be allowed to commute to school from home, rather than live in a dorm; may be granted a private room, instead of sharing a dorm room with 1 or more fellow students; or may be given preferred housing, such as a dorm closer to academic buildings, suite-style living, or a room situated near a faculty or resident advisor (who may even be given some training related to ASD).

Other supports which may be found at some colleges and universities include specific programs to help autistic students acclimate to the college experience. These include mentoring programs, social groups (which may include peers as social coaches), special academic advisors, psychological services specific to ASD, and tutoring. More information on these special programs is contained in a separate article within the CAR Autism Roadmap™.

Some colleges and universities allow students to attend classes without being in a degree program. This means that a student can take classes without the intent of graduating from the institution. Often students will audit a class (take the class without the intention of receiving a “grade” in the class, other than Pass or Fail) or take a class or series of classes for the purpose of transferring the credits to another institution or for the ability to include the training on a resume or job application. While the academic adaptations required by the ADA and Section 504 must be provided, usually students do not qualify for the optional support programs that a given college may offer if they are not enrolled in a degree program.

In general, to enroll in a class offered by a college or university, a student must have graduated from high school. (One exception is high school students who are dually enrolled in high school and a college class.) To enroll, most colleges have prerequisites, such as standardized testing (commonly the SAT or the ACT), teacher recommendations, and/or student essays. You will need to research to find out what the colleges you are interested in require. CollegeBoard.com is a good resource for gaining summary information, and individual college websites can provide more specifics. You will want to search for “disability services” on a particular college’s website to learn about its specific support programs.

Community Colleges:

Community colleges, also sometimes called “technical colleges” or “junior colleges,” offer “associate degrees” or certificates, as compared to “bachelor’s degrees,” which are conferred by four-year colleges. It usually takes two years to complete community college requirements, although it can take longer if a student is not taking a full load of classes, or less time if the student takes extra classes or courses during the summer months. (A full load is typically about four or five classes a semester, for two semesters a year.)

Sometimes the credits acquired in a community college may be transferred to a traditional college (when courses meet the traditional college’s standards). Many community colleges have agreements in place with four-year institutions that have pre-determined what classes will be accepted for credit into the four-year institution if a certain grade-level is achieved. Some have even developed programs in partnership with four-year colleges, which enable a student to graduate from the four-year institution after completing two years in community college and two at the traditional college or university.

Not all students who attend community college do so with the intent of going to a four-year college or university, however. Many students attend community college expecting to transition directly to employment. Many associate degrees and certificate programs offered by community colleges are designed with this in mind.

Additionally, just like in a four-year college, some students simply take classes at a community college without the intention of receiving a degree or a certificate. They may do this for personal development or interest or to get specific training in an area needed by an employer or potential employer.

Areas of study within community college can be quite diverse – often more so than a traditional college. Examples of community college degree programs and/or certificate programs include programs as varied as accounting, health services, interior design, computer technology, graphic design, music and theater, automotive service, culinary arts, and dental hygiene.

To enroll in a degree program within a community college, you must have graduated from high school (or have received a GED). Some community colleges may waive this requirement for students who wish to take remedial courses, self-help classes, or courses designed to learn a specific skill (like engine repair or typing, for example), particularly if the course being taken is not for credit. In general, community colleges usually have less stringent enrollment criteria than four-year colleges. For example, few require standardized testing for admission, although you may need to take a placement test before enrolling in some classes. Admissions criteria vary from school to school, so it is a good idea to check with a specific school to learn what it requires.

One potential benefit to community college is that, in general, students do not live in student housing provided by the school. This removes one of the challenges of a traditional college. Some students on the autism spectrum find it helpful to take courses at the community college level before applying to a four-year college or university. This allows them to get acclimated to participating in a college environment on a smaller scale (community colleges are generally much smaller than a typical four-year college) and with less complications (college roommates, dorm life, etc.). Though community college students do not live in college housing, there are ample opportunities for students to engage in social activities with one another. There are student organizations, such as student government and special interest groups, which can provide a structured social experience for students who seek out these opportunities.

Support programs outside of those required by the ADA or Section 504 may be harder to find in community colleges. Check with the department in charge of disability services to find out what is currently available and what the school may be willing to consider.

Vocational Schools:

Vocational schools, also known as trade schools, teach students job specific skills. Some vocational programs also provide instruction on core academic skills, such as math and writing, particularly when these skills are relevant to the job the student is preparing for.
Many existing trade schools are government-run or supported, such as those related to a state’s Office of Vocational Rehabilitation. Other trade schools are becoming less prevalent as community colleges are developing similar programs and certificate programs.

Most trade schools do not require a high school diploma or GED. Additionally, high school students are often dually enrolled in high school and a vocational program as part of each student’s transition plan. When a vocational school is part of a high school student’s transition plan, the accommodations available to that student through his or her Individualized Education Program (IEP) or 504 Plan will apply. Students who are no longer enrolled in high school will receive the accommodations allowed by Subpart E of Section 504 of the Rehabilitation Act and Titles II and III of the ADA. Additional support programs are less likely to be available in vocational schools.

Other Community Programs:

Besides the programs discussed above, there is a wide array of options for education in the community. Most of these do not yield a certificate signifying mastery (though some do), but they can provide a means for both furthering learning in a specific area of interest as well as provide an opportunity for social interaction with individuals with similar interests. These programs can be found at your local YMCA, library, parks and recreation department, hospital, state department of education (search for “adult education”), health and wellness centers, and even local business establishments like Viking (cooking classes), Home Depot (carpentry, tiling, etc.), and Michaels (flower arranging, knitting, and other arts and crafts classes).

Because these programs are often small, it is a good idea to contact someone who is familiar with the class you are interested in and ask for any specific accommodations that may help you succeed. If the person with whom you are speaking is unfamiliar with the need to make the program accessible to individuals with disabilities, ask to speak to the person in charge of ADA compliance.

Online Education:

Many of the programs discussed above also have online versions. This may be a good option for someone who wants to build skill and expertise before entering a program offered in-person or for someone who is hesitant to enroll in an in-person program at all. However, because an online program by its nature does not have a face-to-face social component, it is limited in its ability to prepare someone for interactions in the community.

One reason many individuals on the autism spectrum choose to pursue higher education is for the social connection provided. If this is not your purpose for pursuing post-secondary education, online education may be worth considering. Increasingly, job opportunities are available to those willing to work remotely; indeed, some jobs, such as freelance writing, web design, and telemarketing, may have no or minimal requirements for face-to-face meetings. These do require other interpersonal skills, however, such as the ability to effectively communicate by phone, Skype, and/or email.

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Taking a Keystone Exam

Keystone exams are end-of-course assessments that are designed to test a student’s proficiency in certain subjects. Beginning in 2017, Pennsylvania requires students to take and pass these exams before being allowed to graduate. If a student passes the exam, he or she is said to be “Proficient” or “Advanced” in the subject matter. A student who fails the exam will receive a score of “Below Basic” or “Basic.”

Currently there are Keystone exams in the following subject areas:

  • Algebra I
  • Biology
  • Literature

Each exam is made up of multiple choice questions and constructed-response, or open ended questions. Multiple-choice questions are worth about 60-75% of the total score, depending on the test. Constructed response questions ask students to explain, analyze, describe, or compare. Most require students to show their work or explain their reasoning. Some questions will also require students to perform calculations or create graphs, plots, or drawings. Evaluators are trained in applying a pre-determined scoring system score the written responses. The constructed-response questions are between 25-40 percent of the total score.

The exams are not timed, meaning that students may take as much time as they need to complete the exam. In general, most students need about 1-1.5 hours to complete each module, or 2-3 hours per test.

Keystone exams are offered in the Winter, Spring, and Summer. Because many students take Algebra 1, Biology, and Literature before their senior year of high school, students should take Keystone exams in the Spring of the year in which they take the particular subject. For example, if a student takes Biology in 10th grade, the student should take the Biology Keystone exam in the Spring of 10th grade. Students who do not take a particular course (because of modifications to the academic curriculum based on an Individualized Education Program) must take the Keystone exam for that course no later than Spring of 11th grade.

Tests can be taken in paper or online format. Students who take the online version will have tutorials and online training programs available prior to taking the test. The online exam has a “Help” feature that is available to the student during the exam.

Tests must be administered, proctored, and monitored by school staff who are certified through the Pennsylvania State Test Administration Training (PSTAT). The Pennsylvania Department of Education strongly suggests that teachers not administer or proctor exams for their own students in order to prevent suspicion of testing anomalies. Other people including a student’s teacher or aide may be in the room, however, as long as they sign a Test Security Certification.

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Romance 101: Dating for Autistic Adults

Navigating the singles’ scene is not easy for anyone, whether or not you are on the autism spectrum. Nevertheless, autistic adults may need to hurdle far more obstacles than their neurotypical peers to thrive in a world of dating. Some autistic adults go through their entire adult life without having much interest in romance or dating, while others are very interested and actively pursue romantic relationships. If you are interested, this article contains some tips on getting started. If you are a parent or a friend of an autistic adult, your job is to make sure that the person knows that you are open and available for support.

Where to meet people?

Some people (including neurotypical people) say that meeting people is the hardest part of dating. Singles often go to bars to meet each other, but in reality, very few couples actually meet at a bar “singles scene.” If you are autistic, going up to someone new in a bar and striking up a conversation may seem particularly difficult or ineffective. Rest assured, there are many other ways to meet someone.

The best place to start is to look at what you do each day. Where do you go? How do you get there? Take the time to really notice the people you encounter on public transportation and at your favorite places to visit. Be careful of your workplace, however, as romantic relationships at work are often discouraged, and sometimes even forbidden. One reason for this is that it can create an awkward work environment if one person is not romantically interested in the other or if the relationship doesn’t work out for another reason.

Don’t despair if you don’t see any dating prospects while on your everyday routines. However, you may need to get out of your comfort zone in order to meet someone new. Online dating and joining a new social group may be better options for you.

Online dating websites can make it easier to get familiar with a person before meeting them. Information about another person’s likes and dislikes are available so that you can plan ahead for what to do with that person or what to talk about. Some sites claim to match people based on personality and behavior traits, including how much time the individual wants to spend alone and how important a physical relationship is. Although there are some great benefits to online dating websites, always practice caution and safety when planning to meet someone in person. While it is reasonable to assume that most people who post a profile on a dating website are there to meet someone to date, not all people are interested in a committed relationship, and unfortunately, sometimes people use these websites for deceptive purposes (for example, sexual predators, financial scams).

If meeting someone one-on-one seems like a big first step, participation in a social group or club activities is a great way to meet people with similar interests. Group activities are often less stressful than one-on-one situations because the focus is on the activity, not on making small talk. Social groups also provide the opportunity to observe typical socialization among others. MeetUp.com offers many options of social groups centered around activities and hobbies and is a way to meet people with common interests. You might also consider looking into events at a local museum or restaurant. Depending on your interests, you might find something right for you (Quizzo, karaoke, sports trivia, for example). The Resource Directory of the CAR Autism Roadmap™ contains a list of social groups for people on the autism spectrum, where you can meet other autistic adults.

Will you go out with me?

There is more to asking someone out on a date than finding a person and asking them to go out with you. In particular, before asking someone on a date, it is a good idea to try to figure out if they have any interest in going on a date with you. It is also a good idea to think about good activities to do on the date – ones that both you and your potential date will enjoy.

Detecting interest depends on reading verbal and nonverbal cues, which can be difficult for an autistic individual. Body language is an important way to judge interest, whether it is through eye contact, body orientation, or a touch on the shoulder. It is just as important to be able to detect disinterest as it is to sense interest, but picking up on a sarcastic tone of voice or avoidance is often challenging.

Similarly it is important that you know how to appropriately show your interest in someone. You can use the cues for detecting interest to show interest as well. It is really important to understand what is and is not appropriate. For example, if it is difficult to distinguish between making a harmless, flirty joke and making a hurtful or offensive joke, try another strategy to show interest, like asking about things the person is interested in or even volunteering to help the person with a project.

Watching television shows flooded with romantic relationships can be a great educational tool. Movies that include romantic relationships will also work. Watch these with a trusted friend or family member so that you can discuss what is happening and make sure you are interpreting the all the cues. However, whether it is The Bachelor or The Notebook, make sure you understand that much of what is depicted is likely not an accurate depiction of dating in the real world.

In addition to behavior, appearances count! It is important to pay attention to personal hygiene, for example, remembering to shower and wearing deodorant and clean clothes every day.

Once you find someone that you enjoy spending time with and are attracted to, there is only so much that you can learn from body language and verbal cues. To test whether the feelings are mutual, you will eventually have to ask your special someone on a date. This isn’t easy for anyone, whether they are autistic or not! Take a deep breath and try to relax. Confidence is key, so remember that everyone is special and has unique qualities that others will find attractive.

Look for examples of “asking people out” from movies or age-related TV shows. Consider role-playing with a friend. If you are not comfortable with asking someone out in person, know that there are alternatives, such as e-mail, instant messaging, texting, or writing an old-fashioned note. In the age of electronic communication, it becomes even more important that you assess interest and character before sending an electronic message, however. Emails and text messages are easily mass-disseminated, which can cause embarrassment when sent or forwarded to unintended recipients.

When choosing what to do for a date, don’t forget to consider what the other person is interested in. Pick something that you both will have fun doing. Traditional activities might include going out to dinner, to the movies, or to a concert. But make sure whatever you choose works for you. For example, if you have sensitivity to loud noises or crowded places, a typical concert venue might not be the best choice. If you both really like live music, maybe a coffee house with an acoustic guitar is a better option. For a first date, you may want to keep it short or at least have a defined time for it. This helps reduce the anxiety over when it is time to end the date.

Dating Concerns Specific to Autistic Individuals

  • Sensory issues may be a concern for an autistic adult, especially when dating can involve physical contact. If hugging is too much, consider hand-holding as an alternative. If the date takes place somewhere subject to loud noises and/or visual stimulation, pre-plan how you might take breaks with your date. Knowing a thing or two about self-advocacy can be a major benefit in these circumstances.
  • Small talk can cover a wide range of topics, such as movies, TV shows, music, sports, theatre, or other extracurricular activities. Practice how to express engagement in what the other person is saying and also how to tell if someone else is bored or waiting for a chance to chime in. Also be aware of sensitive vs. casual topics. For example informal conversations about likes and dislikes are usually worry-free, whereas topics like politics and religion may be problematic. Although these subjects are acceptable to discuss, be sure not to perseverate on a personal belief or opinion. Focus on asking questions about the other person by thinking about what makes you who you are. Some examples include: What do you do for work? What kind of vacations do you like to go on? Do you play any sports or are you involved in any social groups? The book 4,000 Questions for Getting to Know Anyone and Everyone also may provide more ideas.
  • Intimacy goes hand in hand with dating, and it is essential to be careful about physical contact when meeting someone new. Before pursuing a physical relationship, make sure that both people involved have explicitly expressed that they are comfortable with that kind of interaction and that it is what they both desire.
  • Watch out for love fixations. Autistic individuals sometimes can become easily preoccupied with a subject of interest. This attribute, combined with a tendency to be steadfastly loyal, may make some autistic individuals more likely to become fixated with a particular love interest. Think about how your actions may be perceived by the receiving party and make sure your advances are not overwhelming. Sometimes good intentions and interest can be misconstrued as stalking.

Unrequited Love… How to handle rejection?

Facing rejection can be embarrassing and painful, regardless of if you are neurotypical or on the spectrum. This is why it is important to realize the possibility of rejection when asking someone out. If you’re asking someone out face-to-face, think about what you might say in reaction to a negative response, like “Alright, no problem. Maybe I’ll see you around,” and walking away. No matter what, never get down on yourself, don’t take it personally, and always remember the age-old saying, “There are hundreds of fish in the sea!”

Safety

Whenever meeting someone new, safety should be a top priority. Getting together in public spaces, like a restaurant or museum is a good idea when getting to know someone and developing a trusting bond. Given that sexuality is a pertinent component of romantic relationships in adulthood, physical and emotional safety must be considered. For more on sexuality and how to stay protected when the topic of sex arises, visit the Public Safety section of the CAR Autism Roadmap™.

Marriage

Many autistic individuals do get married and have children, whether their partner is autistic or neurotypical. Plenty of neurotypical people and autsitic people also choose not to get married. Remember that marriage is a personal preference, not a rule. Like any relationship, it requires hard work, honesty, and openness. Similar expectations, lifestyles, and needs all contribute to a successful relationship, regardless of neurology.

The Bottom Line

Dating should be something that contributes to the happiness in your life. Although it can be very challenging and confusing at times, try to use all experiences with dating as opportunities to grow and learn about yourself and the people you are interested in. The very last line: Be yourself, have fun, and stay safe!

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So You Think You May Be on the Autism Spectrum…

So you think you may be on the autism spectrum?

Why might this have occurred to you?

Perhaps you have put two and two together and maybe this makes some sense for you. Just maybe:

  • You have always had trouble making friends and/or you just don’t find it so important to have friends.
  • There are lots of jokes you just don’t find funny, and all the people around you do.
  • You have an unusually strong interest in things. (For example, in baseball, you know every statistic on every player there is – well beyond the “hobby” level.)
  • You are pretty rigid about the things you do, from the food you eat to the clothing you wear.
  • Your child just received a diagnosis of Autism Spectrum Disorder, and it got you thinking.

Why would wondering if you’re on the autism spectrum be important? What difference could it make, and why would someone want a formal diagnosis?

  • Well, sometimes you simply just need to know. It is helpful for some to identify themselves with a group of people and feel like they are part of something, not just different than others. Certainly, if you do eventually receive a formal diagnosis, you are the same person with it as you were without it. A diagnosis will not necessarily change anything in your life.
  • A diagnosis may give you a context for understanding certain behavior, which may allow you to understand yourself a bit better.

For example, as difficult as it may be, you choose to go to the office holiday party, arrive on time, and say hello to your fellow workers, but you leave at the earliest possible moment. Or perhaps you prefer to go to work the same way each day: you take the train, walk 3 blocks to the office, take the elevator up to the 3rd floor, and then you travel back home in reverse. One day it’s raining and a colleague offers you a ride home because he has an appointment after work near your home. You feel uncomfortable with his request, perhaps it even makes you anxious to think about sitting in the car for the 20 minute ride home, and you simply don’t want to change your daily routine. You walk 3 blocks to the train and take the train home in the pouring rain, even though the car ride would get you home much sooner, drier, and what many would consider far more comfortably.

What difference does it make? Maybe no difference at all, except that with a diagnosis you have a framework to help you understand why you make the choices you make and why you behave the way you do.

  • A diagnosis may help you find specialized treatment for your symptoms, or possibly even qualify for government supports. Having a formal medical diagnosis may be required to access some services and programs.

Should you pursue a formal diagnosis from a professional?

This may depend on why you are seeking a diagnosis in the first place. If you are seeking government benefits, then pursuing a diagnosis from a qualified professional may be necessary. However, if you are just curious or are hoping to put experiences in context, there may be options other than getting an official diagnosis, which can be expensive. (Your insurance may not cover the cost of an evaluation for an adult or you may not be able to find a clinician who works with adults and who accepts insurance for diagnostic evaluations.)

There are non-standardized questionnaires available on the internet, which can help you assess whether “this” may be Autism Spectrum Disorder and help you draw your own conclusions. A link for one of these, the Autism Spectrum Quotient, is listed at the end of the article. If you decide that you want to speak to a professional experienced with diagnosing ASD in adults (either before or after taking an online “test”), the Resource Directory within the CAR Autism Roadmap™ can help you locate someone. You can also locate a professional counselor who can help you better understand yourself and come to terms with a new diagnosis, whether that means making changes in your life or simply accepting yourself for who you are.

If you determine that you do fall on the autism spectrum, there are listservs and web sites that were developed and managed by autistic individuals, some of which are included in the Additional Resources links below. There are also a number of blogs, articles, and books written by autistic individuals. These offer a unique perspective and an opportunity into these individuals’ worlds. In particular, you may want to check out the blog, The Musings of an Aspie, written by an autistic woman, or the books Look Me in the Eye and Raising Cubby, both written by John Elder Robison.

As you will learn if you don’t know it already, having a diagnosis of ASD doesn’t preclude you from succeeding in life and being happy. Indeed, there are anecdotal descriptions of famous individuals that may have met diagnostic criteria for ASD if they were around today, and other contemporary success stories of people who are on the autism spectrum. These include Albert Einstein, Mozart, Dan Aykroyd, Susan Boyle, Temple Grandin, and so many others. This is quite an impressive group of people! While not everyone on the autism spectrum will have this level of notoriety or success, if you find that you are on the spectrum, make the most of this knowledge and know that you are in good company.

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Family Questions to Ask When Determining Driving Readiness

This list of questions was developed by autism and driving safety researchers at Children’s Hospital of Philadelphia (CHOP) to assist families of autistic teens and young adults who are considering learning to drive. We recommend discussing these questions as a family and with your team of support professionals, including your physician*:

• Do you feel your teen/young adult consistently demonstrates good judgment and maturity at school, around peers, and at home?
• Is your teen/young adult receptive to constructive criticism and instruction?
• Does your teen/young adult demonstrate knowledge of the rules of the road and other skills taught in driver education classes? If not, is specialized instruction or a driving assessment needed?
• Is your teen/young adult agreeable to practicing driving with a skilled adult prior to driving independently? If so, is there an adult willing and able to serve in this important role?
o Previous research showed that autistic teens/young adults were more likely to be licensed when they had a parent who had previously taught a teen to drive.
• Have you prepared your child to acquire independent life skills in diverse domains, including: personal hygiene, health, food preparation, housekeeping, and transportation?

*Questions to Ask Your Physician
o Are there any medical or behavioral conditions (such as significant visual impairment) that may prevent your teen/young adult from driving safely?
o Are there any medical or behavioral conditions (such as significant visual impairment) that may prevent your teen/young adult from driving safely?

LEARNING TO DRIVE
If your child is ready to begin driver’s education and parent-supervised practice, CHOP experts recommend that families:

• Add goals about driving to the child’s individualized education plan (IEP) and follow up with school personnel.
• Seek the advice of a driving rehabilitation specialist or occupational therapist who has training in working with individuals with neurodevelopmental differences.
• Consider treatment for ADHD symptoms, including impulsivity and inattention, if needed.
• Provide plenty of parent-supervised driving instruction in partnership with professional driving instruction. The TeenDrivingPlan Practice Guide from CHOP experts offers online evidence-based instruction in six driving environments, at night, and in inclement weather

ADDITIONAL RESOURCES FROM CHOP
Center for Injury Research and Prevention at CHOP: Learn about autism and driving research and resources from this Center of Emphasis at the CHOP Research Institute.
o CHOP Research on Neurodevelopmental Differences and Driving
o Young Autistic Drivers Crash Less Than Their Non-Autistic Peers
o Teaching Autistic Adolescents to Drive
o Newly Licensed Autistic Drivers Crash Less Than Other Young Drivers

o Many Voices Needed in Autism and Driving Research

o Can Autistic Teens Drive?

TeenDrivingPlan Practice Guide: This online resource offers practice driving lessons from CHOP experts, including 54 short videos and tips to create the right learning environment.

Center for Autism Research at CHOP: Beyond this Roadmap, access helpful information and guidance as your child transitions to adulthood from CHOP experts.

OTHER ADDITIONAL RESOURCES

DriveWise and DriveAdvise, from the Beth Israel Deaconess Medical Center




Social Security Disability Insurance for Adults with Disabilities

Social Security Disability Insurance (SSDI, also known as SSD) is an entitlement benefit. The amount of income an individual receives from SSDI is dependent on the amount the individual or his or her responsible parent paid into the social security program.

As an adult with Autism Spectrum Disorder (ASD), there may be two ways for you to qualify for SSDI. The first is if you have worked a minimum amount of time (the amount of time required depends on how old you are) and have paid into the Social Security system. If you become unable to work because of your disability, you may qualify for SSDI payments.

The second way you may qualify for SSDI is through a family member. If you are unmarried and can prove that you were disabled before age 22, you may be entitled to SSDI payments if one of your parents worked and paid into the Social Security system and if your mom or dad is retired, disabled, or deceased. The Social Security system refers to an individual who qualifies for SSDI through this method as a Disabled Adult Child (DAC). If you are an adult with a disability occurring before age 22 but your parent is not yet retired, disabled, or deceased, the system unofficially may refer to you as a “DAC in waiting.”

How to Apply

To apply for SSDI, you will need to contact your local Social Security Administration (SSA) field office. You may apply by:

  • completing the application online, or
  • calling for an appointment and applying at your local Social Security office, or
  • applying over the phone at 1-800-772-1213; if you are deaf or hard of hearing, you can call TTY 1-800-325-0778.

Proving Disability

Regardless of whether you have worked or if you are relying on a parent’s work history to obtain SSDI, you will need to prove that you are disabled to receive SSDI benefits. The process of proving disability is the same as for Supplemental Security Income (SSI) and Medicaid.

The federal government defines “disabled” as someone who is:

“Unable to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than twelve months.”

The local SSA office will gather information about your disability. You will need to provide the SSA field office with the following information:

  • description of the impairment(s)/disability
  • who and where the individual is being treated for the disability
  • any other information that relates to the disability

If you have worked in the past and are claiming that you are no longer able to work, you will need to provide information to explain why your condition has become more severe such that it limits your ability to work now.

The local SSA field office sends the information to a Disability Determination Services (DDS) office to evaluate the disability. The DDS offices are state agencies that are responsible for gathering medical information and making the initial decision about whether the applicant is disabled. (Though state agencies, these offices are funded by the federal government.)

Usually, the DDS gathers evidence from the applicant’s own medical sources. If that evidence is unavailable or insufficient to make a determination, the DDS will arrange for an independent evaluation for a consultative examination (CE) to obtain the additional information needed.

After all the information is collected, the decision about disability is made at the state DDS office, and the case is sent back to the local SSA office for next steps. If you are found eligible for SSDI payments, your local SSA office will calculate your monthly payment. If you receive both SSDI and SSI, the SSA office will adjust your benefit award accordingly. If you are not found to be “disabled” as defined by the federal government, you have the right to appeal the decision.

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Accessing Waivers through the Pennsylvania Office of Developmental Programs

The Pennsylvania Office of Developmental Programs (ODP), part of the Commonwealth’s Department of Human Services (formerly the Department of Public Welfare), administers two waiver programs that may be appropriate for some individuals on the autism spectrum:

  • The Person/Family Directed Waiver
  • The Consolidated Waiver

Both of these waivers require that the individual be at least three years old, have a documented diagnosis of intellectual disability before age 22, and be in need of active treatment. There are income and resource limits restricting who is eligible. Services provided include assistive technology, behavioral support, educational support, prevocational services, respite, supportive employment, transportation, and therapies, to name just a few. The services provided by the Person/Family Directed Waiver and the Consolidated Waiver are the same, except that the Consolidated Waiver offers residential supports.

To receive either of these waivers, you must be registered for intellectual/developmental disability services with your county’s Mental Health/Intellectual Disabilities (MH/ID) office. (In some counties, this office is still referred to as the office of MH/MR – Mental Health/Mental Retardation.) You can do this online, through Pennsylvania’s COMPASS system or by going in person to the local office. When you do so, you will need to provide proof that your child has an intellectual disability by providing proof that your child has an IQ of 70 or less and has significant difficulty functioning in daily life activities as shown by standardized tests. After registering, you will receive written notice of eligibility for services. If you are eligible, you will be assigned a service coordinator, who can help you apply for waivers. If you are found ineligible, you may appeal.

If you are found eligible for intellectual/developmental disability services, you may apply for a waiver by completing an application. Many families find that it is easier to apply in person at the county assistance office than online through the COMPASS system. The application will require you to provide information about family income, resources, expenses, health insurance, and demographic information. After receiving your application, your local MH/ID office will meet with you to complete a Priority of Urgency of Need for Services (PUNS) form. Your need for services will be categorized as emergency (immediate need), critical (within one year), and planning (more than a year before services are needed).

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Children’s Health Insurance Program in Pennsylvania

The Children’s Health Insurance Program (CHIP) provides health coverage for families who do not qualify for Medical Assistance (MA) and who are not able to meet the expense of private insurance. CHIP is funded by states and the federal government, but it is administered by states. Below is information on how to apply for CHIP in Pennsylvania.

Eligibility

Your child may qualify for CHIP in Pennsylvania if he or she is:

  • Under 19 years old
  • A U.S. citizen, U.S. National, or Qualified Alien
  • A Pennsylvania resident (living in Pennsylvania)
  • Uninsured and ineligible for Medical Assistance

Cost

  • Your income does not matter in terms of your eligibility, but it does matter in terms of what you will pay for CHIP coverage. The cost of coverage varies and changes annually depending on the number of members in your household and your household annual gross income. The cost of coverage will vary between free, low cost, and full cost.
    • For example, as of April 2013, if a household of four members makes between $23,050 and $46,100, the cost of coverage is free; if income is between $46,101 and $69,150, the family may pay a low cost for coverage; if household income is $69,151 or more, the family will pay the full cost of coverage. (Note that families of four who make less than $23,050 may qualify for Medical Assistance, as of April 2013).
  • The cost of CHIP coverage means the amount a family pays for the monthly premium and for co-pays for services.
  • In order to qualify for the low cost and full cost CHIP programs, your child has to have been uninsured for 6 months. A 6 month period of no insurance coverage was written into law to prevent families from dropping out of their private insurance coverage to enroll in a public program and to prevent employers from doing the same to their employees. CHIP is primarily for families who have no other option for health insurance coverage.
    • There are exceptions to the 6 month wait rule; the 6 month wait may be waived if a child is under 2 years old, if the child is uninsured because the parent became unemployed, or if the family is moving from Medicaid to CHIP.
  • Families must renew annually to maintain or keep CHIP coverage. While it is not automatic, it should be an easy process. CHIP or your insurance company will send you a renewal form 90 days prior to when your child’s coverage ends. Your insurance company can also walk you through the process.

Benefits

CHIP is a comprehensive insurance coverage package; you cannot elect to have certain benefits and not others. For example, you cannot have dental benefits only. The list of benefits for CHIP includes: Immunizations, Routine Check-ups & Well Visits, Prescription Drugs, Dental, Vision, Hearing Services, Emergency Care, Mental Health Benefits, Hospitalization, Durable Medical Equipment, Substance Abuse Treatment, Partial Hospitalization for Mental Health Services, Rehabilitation Therapies, Home Health Care, and Maternity Care.

How to Apply

There are several ways you can apply:

  • Online with COMPASS: COMPASS is PA’s online application system, so you can apply for other services using just one application. The system walks you through the questions, and the application is submitted immediately and directly.
  • CHIP Insurance Companies: You can apply through insurance companies that provide CHIP coverage in your county.
  • Mail: You can download and print an application, and send it by mail to a participating CHIP insurance company.

After receiving all necessary documents (remember to send in proof of income such as pay stubs!), you should be notified within 4-6 weeks whether your child/children are eligible for CHIP.

Children with Disabilities

When you complete the application for CHIP, the application will also be considered for Medical Assistance. For children with disabilities who will require more supportive services, your application may be reviewed for Medical Assistance, regardless of your household income.

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Cyberbullying

Cyberbullying has become more prevalent as technology becomes more readily available. Cyberbullying occurs online or through text messages and emails. Examples include mean text messages or emails, rumors sent by email or social media, posting or sending embarrassing pictures or videos without consent, and creating fake profiles. Cyberbullying can be particularly destructive as it can happen anonymously and can be distributed quickly to a wide audience. The fact that emails and texts cannot easily be deleted make its effects long lasting.

There are a few ways your child and you can protect against cyberbullying.

  • Establish rules for technology use in your house and on all devices.
  • If your child has a social media account, make sure you explain and show your child how to set up privacy settings.
  • No one but you and your child should know your child’s passwords; they are not to be shared with anyone, even friends.
  • Follow your child’s social media accounts, by “friending” your child or signing up to follow their Instagram, Tik Tok, Twitter, blogs, or other accounts.
  • Be aware of what sites your child visits online.
  • Be wary of on-line video games, including XBox and others, which allow your child to play virtually with anyone else who happens to be playing the game. Some systems allow users to talk through headsets to whoever they allow into their game.
  • Be sure to remind your child that anything your child posts or sends electronically can easily be forwarded or reposted elsewhere. This can cause embarrassment if it is read by an unintended audience.
  • Encourage your child to tell you or another trusted adult if your child learns he or she is the victim of cyberbullying. Telling an adult could not only help to minimize the damage and prevent future occurrences, but an adult can help your child come up with ways to handle the situation with peers and can help maintain or rebuild self-esteem.

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History and Current Status of Keystone Exams in Pennsylvania

In 2010, Pennsylvania passed a law that supported the creation of 10 end-of-course assessments, known as “Keystone Exams,” in the following subject areas: Algebra I, Algebra II, Geometry, Literature, English Composition, Biology, Chemistry, U.S. History, World History, and Civics and Government. These exams would serve two purposes: (1) establishing high school graduation requirements for students throughout the state; and (2) providing a way for the state and the federal government to hold high schools accountable for educating students.

Students began taking the tests in 2012, with a plan to have Keystones become a graduation requirement in 2017. However, as of 2016, only three of the 10 exams had been developed – Algebra 1, Biology, and Literature.

One of the reasons for the delay in test development is that students have not performed well on the tests. Student scores are classified as Below Basic, Basic, Proficient, or Advanced. More students than expected scored Below Basic or Basic. This left many districts scrambling to provide supplemental classes and services to students in an effort to improve students’ scores so that they could graduate.

Additionally, state Regulations allow students who are unable to score “Proficient” on a Keystone exam after two attempts to try to demonstrate proficiency through the completion of a “Project Based Assessment.” Again, districts had to work to design appropriate projects and had to determine how to measure “proficiency” on them.

In February 2016, Pennsylvania delayed the requirement of passing Keystone exams in order for a student to be eligible to graduate. Students were still required to take the exams, with limited exceptions, but they did not have to pass them.

In 2018 Governor Wolf signed Senate Bill 1095 into law that shifted away from the states reliance on standardized testing as a graduation requirement. Senate Bill 1095 extends the options for students to demonstrate graduation readiness. These options include:

  • Scoring proficient or advanced on each Keystone exam- Algebra I, Literature, and Biology
  • Earning a satisfactory composite score on the Algebra I, Literature, and Biology Keystone Exams. The passing composite score will be available in August 2019.
  • Earning a passing grade on the courses associated with each Keystone Exam, and satisfactorily complete one of the following: an alternative assessment (SAT, PSAT, ACT, ASVAB, Gold Level ACT WorkKeys), advanced coursework (AP, IB, concurrent enrollment courses), pre-apprenticeship, or acceptance in a 4-year nonprofit institution of higher education for college-level coursework.
  • Earning a passing grade on the courses associated with each Keystone Exam, and pass the National Occupational Competency Testing Institute (NOCTI) or the National Institute of Metalworking Skills (NIMS) assessment in an approved Career and Technical Education concentration.
  • Earning a passing grade on the courses associated with each Keystone Exam, and demonstrate readiness for postsecondary engagement through three pieces of evidence from the student’s career portfolio aligned to student goals and career plan. Examples of evidence will include ACT WorkKeys, SAT Subject tests, AP, IB and concurrent coursework, higher education acceptance, community learning project, completion of an internship, externship or co-op or full-time employment.

These requirements will take effect beginning with the graduating class of 2022. There are no statewide graduation requirements for the classes or 2019, 2020, 2021 but students, parents, and guardians should reference their institutions local policies determining graduation.

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Graduation Requirements for Pennsylvania Students with IEPs

Beginning in 2019, most high school students in Pennsylvania will be required to take and pass Keystone exams in Algebra 1, Biology, and Literature, in order to graduate. Students who receive special education services are not usually exempt from these tests.

Each student’s Individualized Education Program (IEP) team will determine whether the student:

  • Takes Keystone Exams without accommodations; or
  • Takes Keystone Exams with accommodations; or
  • Takes the Pennsylvania Alternate System of Assessment (PASA) instead of Keystone exams.

Only students with “the most significant cognitive disabilities” are allowed to take an alternative assessment, according to the federal Every Student Succeeds Act (ESSA). Under ESSA, school districts can permit up to one percent of students with the most significant cognitive disabilities to take an alternative assessment. Districts may apply for a waiver to exceed this cap.

Some students with IEPs may have modified curriculums and may not take coursework in Algebra 1, Biology, and/or Literature during high school. Even though these students have not taken the class, they are required to take the Keystone exam for each subject no later than Spring of 11th grade, unless they have a religious exemption or are determined by the IEP team as having a “most significant cognitive disability.” The student is not allowed to complete a Project Based Assessment instead of taking the Keystone exams, but a student with an IEP does not have to take a Keystone exam more than once before beginning the project.

It is unclear whether students who fail a Keystone exam may show proficiency through a Project Based Assessment even though they have not taken the course. Pennsylvania regulations state that Project Based Assessments are available only to students who have taken the class being tested (Algebra 1, Biology, or Literature). In practice, many districts do allow students to demonstrate proficiency through a Project Based Assessment if they have failed an exam, regardless of if the students have taken the subject.

Accommodations and Modifications

Specific accommodations can be provided to students with disabilities when taking Keystone exams so long as the accommodations selected do not invalidate the state assessment. The accommodations must be documented in the student’s IEP or 504 Plan and should mirror accommodations already being provided to the student for instruction and curriculum-based assessments.

Accommodations for instruction and assessment are commonly categorized in these ways:

  • Presentation Accommodations, which allow students to access information in alternate ways. These alternate modes of access are auditory, multi-sensory, tactile, and visual.
  • Response Accommodations, which allow students to complete assessments in different ways (such as by using a scribe or writing responses in a test booklet) or to solve or organize problems using some type of assistive device (for example, manipulatives) or organizer.
  • Setting Accommodations, which change the location in which a test or assignment is given or the conditions of the assessment setting (such as allowing a cueing system for on task behavior).
  • Timing/Scheduling Accommodations, which change the way time is organized or provide breaks.

Modifications are not allowed for Keystone exams. Modifications refer to practices that change, lower, or reduce learning expectations, such as changing the content that is tested.

Students Who Defer Graduation

Students who receive special education services are entitled to continue with secondary education (high school) until the end of the school year in which they reach age 21. These students may have three or even four extra years of schooling. Many parents and school districts wonder how deferring graduation impacts the need to pass Keystone exams for students who have completed four years of high school prior to 2019.

The state regulations are silent on this issue. Some Pennsylvania school districts use the date the student would have graduated with same age peers (that is, the year the student completes four years of high school) to determine if the student must reach a proficient level in order to graduate. For example, a student who completes four years of high school in 2018 but who defers graduation until 2021 when he turns age 21 would not be required to score a proficient level on Keystones in district that follow this interpretation. IEP teams should consult with their school boards to determine the district’s policies regarding Keystone proficiency for student who defer graduation until 2019 and beyond. (This issue is only relevant for students who complete four years of high school in 2017 or 2018.)

Concluding Thoughts

The IEP team should begin discussing these options as part of the student’s transition planning. Transition planning should begin during the IEP year the student turns 14 (if not before). Overall, a student’s participation in Keystone exams and graduation requirements generally should align with the student’s transition plan to post high school opportunities.

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Could I Have Gone Through My Entire Childhood on the Autism Spectrum? Pursuing an ASD Diagnosis as an Adult

It’s true: most diagnoses of Autism Spectrum Disorder (ASD) are given to children. However, there are likely many adults who are on the autism spectrum but who do not have an official diagnosis. This may be because these adults were misdiagnosed as children or simply found ways to “get by.” Depending on how old you are, when you were younger, autism may have been a diagnosis only given to children who had little or no language abilities and who had severe disabling behaviors.

Perhaps you’ve done enough research to know that the diagnosis of ASD is now a broad one, which is given to individuals with a wide range of ability as well as disability. Nobel Prize winners, famous writers, actors, and musicians, as well as loads of everyday people with their own special talents, now openly declare they are “on the spectrum.”

If you feel you may be on the autism spectrum, and you are successful, have a good job or career, and are content and happy with your life, you may not feel compelled to get a diagnosis. On the other hand, if you are struggling to understand why you seem to be different from your friends and colleagues, and/or why you react differently to everyday things, you may be curious to know if ASD may help explain some of the difficulties you are experiencing. Additionally, you may hope that obtaining a diagnosis will help you get the support that you need to succeed at work or to find a social niche that feels right to you.

What are the Signs?

All individuals on the autism spectrum have two things in common, which get in the way of their every day lives:

  • Difficulty with social communication
  • Repetitive or stereotyped interests and/or behaviors

Below are some common indications of ASD in adults; however, just because you have one or even several of these symptoms does not mean that you would meet full criteria for ASD. The only way to know for sure is to be evaluated by a trained professional.

  • Maybe you don’t get some jokes. You take the comedian’s language literally and don’t understand what the others find funny.
  • Maybe you don’t like meeting new people and making “small talk.” A cocktail party is simply boring.
  • Maybe crowded spaces make you feel like you cannot breathe. You would rather take the stairs than squeeze into a crowded elevator.
  • Maybe loud noises or bright lights actually cause pain. You walk into the florescent lit conference room, and it actually hurts your head.
  • Maybe you have a special interest that overwhelms and dominates your conversation and thoughts. Your colleague just can’t listen to your talk about outer space any longer and walks away when he sees you coming.
  • Maybe you maintain a strict adherence to routines or rituals. If the train you take regularly is unexpectedly late, it is extremely upsetting and disturbing, so much so it ruins your day.

Every individual on the autism spectrum is different from every other individual on the spectrum. Maybe your particular set of symptoms, feelings, and behaviors will lead to a diagnosis – or maybe not.

If you are interested in pursuing a diagnosis, you may first consider trying a free, on-line self-assessment. Noted psychologist and autism researcher, Simon Baron-Cohen and his colleagues at Cambridge University developed the Autism-Spectrum Quotient for just this purpose. It is not a diagnostic tool, but it can help you decide if you are on the right track. You’ll find a link to it below.

Getting a Diagnosis

To pursue a definitive diagnosis of ASD, you will need to see an experienced clinician. It is important to note that not every clinician has the experience and the knowledge to evaluate adults who may be on the autism spectrum. Diagnosing adults is a relatively new area, so make sure to ask about experience diagnosing adults with ASD before you make an appointment for an evaluation. Additionally, many insurance companies do not cover the costs of evaluations for adults, and the charges can be in the thousands of dollars to complete a diagnostic protocol. Be sure to ask about charges and payment plans ahead of time.

Another option for those with access to autism research centers is to enroll in a research study for adults on the autism spectrum. By enrolling in research, you can contribute to the community, as well as save the costs of the evaluation. Be aware, however, that research studies usually don’t enroll all people who are interested in participating; there may be certain inclusionary or exclusionary factors, such as age, an existing diagnosis, or specific symptoms.

Before pursuing a diagnosis, it may be a good idea to consider finding a therapist who can help you talk through your feelings about obtaining a diagnosis. Look through the “Mental/Behavioral Health” section of the CAR Resource Directory™ to find someone who can help. If you decide you want to proceed, you can also find clinicians with experience making ASD diagnoses in the Resource Directory by searching for “Diagnosticians.” The same therapist may or may not be able to provide you with both services.

I Think I Have Asperger Syndrome. What’s That?

Asperger Syndrome used to be one of three named conditions that made up the broader category of ASD. (Pervasive Development Disorder Not Otherwise Specified and Autistic Disorder were the other two.) In May 2013, the American Psychiatric Association revised the manual which contains many diagnoses of adults and children (the Diagnostic and Statistical Manual of Mental Disorders) and combined these three diagnoses into one singular diagnosis of “Autism Spectrum Disorder” in the latest edition, the DSM-5. While there is no longer an “official” diagnosis of Asperger Syndrome, it is a term which many adults relate to still, and you may hear it used both in the autism community and perhaps even by some professionals.

Why Might I Want to Pursue an Official Diagnosis At My Age?

You may have heard that there are not nearly as many services and supports available to autistic adults as there are for children. This is true. Nonetheless, if you do end up getting a formal diagnosis of ASD, the diagnosis may help you to cope with those things in life you find difficult and may in and of itself provide you with peace of mind.

Another reason many adults seek out a diagnosis is that having one may qualify you for vocational training or, if you have a job, enable you to request accommodations at work to make life on the job a bit easier.

Maybe you are having a difficult time finding work: you have skills, but other things get in the way of allowing you to be successful. With a diagnosis, you may qualify for vocational programs that may help you to refine your interests, develop skills, or even find a job. Additionally, if you receive a diagnosis of ASD, and if you choose to share it with your employer, you may receive workplace accommodations, such as a preferred or reduced schedule or organizational supports, to help you on the job.

There are several articles within the CAR Autism Roadmap™ that discuss accommodations and other employment issues that may be relevant to your situation. Additionally, you can search for “Vocational-Employment” in the CAR Resource Directory™.

Having a diagnosis also makes you part of a larger community of autistic adult. Adults on the autism spectrum, particularly those who are not diagnosed until adulthood, often find that they have much in common. Even if you are not someone who typically joins or seeks out social groups, you may benefit from reaching out to other autistic adults. There are a number of organizations that offer support, resources, and connection to other adults who are on the autism spectrum. Three that you may want to investigate are listed in the “Additional Resources” section below. There are also other more localized groups listed in the CAR Resource Directory™. In the Directory, choose “Support Groups – Adults.”

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How to Apply for Medical Assistance in Pennsylvania

Medical Assistance (MA, also known as Medicaid) is a public insurance system. It may be used to cover medical bills that insurance does not pay or can be used as a primary insurance if a child is not covered by other insurance. MA will cover everything from routine office visits, to prescription drugs, to speech-language therapy. However, not all service providers accept MA. Parents must check to determine if their child’s pediatrician, local hospital, and therapists accept it.

In Pennsylvania, MA is currently available to children with disabilities without consideration of parental income. The state has considered charging a co-pay for services, based on income, and it collects information on parental income when a family applies for MA; however, MA does not take parent income into account when determining eligibility at this time. Any income in a child’s name is considered, however, including money in certain trust funds.

Why Medical Assistance?

Medical Assistance has the broadest coverage of medical and mental health services for persons under 21 of any insurance plan.  It covers services rarely covered by employer provided insurance and currently operates without any annual or lifetime caps, which are often imposed by other insurance plans.

Services covered under the Medical Assistance program may include:

  • Mental Health/Wrap-Around Services
  • In-Home Personal Care Services
  • Diapers (for children 3 years and older)
  • Nutritional Supplements (prescribed by a physician)
  • Prescriptions
  • In-Home Nursing
  • Physical Therapy
  • Occupational Therapy
  • Speech Therapy

Medical Assistance can be a child’s only insurance or it can be secondary to other coverage.  Many families find Medical Assistance useful to supplement/cover those services and/or equipment that are not covered by a child’s primary insurance.

Will My Child Qualify?

In Pennsylvania, many children with disabilities/developmental delays will qualify for Medical Assistance, regardless of their parent’s income.  Here are some basic rules:

A child can qualify for Medical Assistance even if he/she has other health insurance (although, the other insurance usually needs to be billed first). The income and/or assets of the parents/caregivers does not count in determining eligibility for Medical Assistance, if the child’s condition meets certain disability standards. In Pennsylvania, “disability” is defined as:

  • The child has a medically diagnosed physical or mental impairment (or combination thereof);
  • The impairment has lasted or is expected to last for at least one year or to result in death;
  • The limitations caused by the impairment substantially reduce the child’s ability to do the things and behave in the ways that children that age typically  do.

How Do I Apply?

It is possible to apply online through the COMPASS program, however most families have had better success completing the application and bringing it to their County Assistance Office in person. (See the Additional Resources section at the bottom of this article to find a link to help you locate your local County Assistance Office.)

To apply in person, follow these directions:

  1. Call or visit your local County Assistance Office. The phone number will be in the blue pages of the phone book under “Government Offices–State,” “Public Welfare Department of (Name of your County) County Assistance Office.” Or use the County Assistance Office Locator listed in Additional Resources at the end of this article.
  2. Ask for the application PA 600 P, the Application for Medical Assistance.
  3. Complete the form as if you are the child. Under Pennsylvania State law, income of parent(s) must be listed, despite the fact that it is NOT considered when making a determination of the eligibility of the child (provided the child meets the disability requirements). Income of stepparents need not be reported. However, if your child receives income, such as Social Security benefits, do list that information.
  4. Write on the top of the application: “MA FOR DISABLED CHILD HANDBOOK SECTION 355.4.”
  5. Apply for Supplemental Security Income (SSI). In some Pennsylvania counties, caseworkers are insisting that parents apply for SSI for the child and get rejected before they will authorize Medical Assistance. They may require you  to present a rejection letter. You can apply for SSI over the phone, and it only takes about twenty minutes. The toll free number is 1-800-772-1213. Tell the caseworker that you are trying to acquire a medical card for your child who has a disability; you need a rejection letter sent to your home if you don’t qualify for SSI.
  6. Once you have the letter and your Medical Assistance application is completed, call your local County Assistance Office again to schedule an intake interview. Be sure to verify the items you need to bring with you.
  7. Attend the intake interview; bring all necessary documents with you.

If your child appears to qualify for MA, the caseworker you meet at the intake interview can issue you a temporary MA card. The card may be used immediately, but it is only temporary, pending authorization. Your child’s application will be reviewed further to determine whether he or she has a “disability” as defined for MA eligibility. If your child is turned down for the permanent card, you will not have to pay back any money for the services or items purchased with the temporary card (as long as you were honest in reporting facts regarding the disability).

What Documents Should I Bring to the Intake Interview?

In general, you will need to bring documentation of your child’s medical diagnosis, documentation that your child qualifies for educational services, and your child’s Individualized Family Service Program (IFSP) or Individualized Education Program (IEP). Never leave original documents with the County Assistance Office; always bring copies.

Check with your County Assistance Office to see which documents in particular it requires. The items on the list below are typical of the kinds of documentation your County Assistance Office may require:

  • Copy of your child’s Social Security card (or receipt from Social Security that an application for a card has been filed)
  • Copy of your child’s Birth Certificate
  • For Non US Citizens, proof of immigration status (your child must have permanent residency status – a Green Card – to qualify for Medical Assistance)
  • Proof of address (a copy of a utility bill will do)
  • Copy of any other health insurance for your child
  • Verification of any income that the child receives in his/her name (for example, child support, social security benefits, etc.)
  • Parent/caregiver income information (your two most recent pay stubs should be sufficient)
  • Recent (within one year) medical information from a physician (for example, your child’s psychiatrist, psychologist, neurologist, pediatrician), which includes a diagnosis, prognosis, treatment plan, and any medications
  • Your child’s IFSP or IEP
  • Letters from your child’s speech therapist, occupational therapist, and/or any other therapists who treat your child pertaining to your child’s need for services
  • Copy of parent/guardian Social Security card and driver’s license/photo identification is necessary for verification of US citizenship
  • Letter denying your child for SSI

It usually takes 3-4 weeks for eligibility to be determined. If you have not heard from the County Assistance Office after 4 weeks, you can feel free to contact them to find out the status of your application.

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I Just Received a Diagnosis as an Adult — Now What?!

Life has been difficult at times, and I now understand a bit about why I seemed to be different from everyone else growing up, why I had trouble understanding and following social rules, why I struggled understanding people’s emotional reactions, and why I didn’t necessarily feel the way others felt when emotionally charged information was presented.

School was rough, except for the subjects I truly enjoyed! I never realized that the difference I became aware of and was experiencing is part of a diagnosable condition, Autism Spectrum Disorder.

The statement above is just “one man’s perspective.” Another account is described in the following article within the CAR Autism Roadmap™:

Of course, everyone experiences Autism Spectrum Disorder (ASD) somewhat differently. Yet autistic adults, particularly those who are not diagnosed until adulthood, often find that they have much in common. Even if you are not someone who typically joins or seeks out social groups, you may benefit from reaching out to other adults on the autism spectrum. There are a number of organizations that offer support, resources, and connection to other autistic adults. Three that you may want to investigate are:

There are also other more localized groups listed in the CAR Resource Directory™. In the Directory, choose “Support Information – Self-Advocate Support Group.”

You should know that there are few, if any, mandated supports for autistic adults. In fact, unless there are other co-occurring conditions, an autistic adult may not be eligible for any government supports. The following articles contained within the CAR Autism Roadmap™ will help you learn about supports that may be available to you.

Additionally, you might qualify for vocational assistance, such as a job coach or help in refining your interests and abilities. You should contact your local Vocational Rehabilitation Agency:

To find agencies in other states, visit:

Regardless of whether you qualify for services from your local Office of Vocational Rehabilitation, you may be entitled to accommodations in your workplace if you have a job and choose to disclose your diagnosis and how it affects you. Read the following articles from the CAR Autism Roadmap™ to learn more about accommodations and other employment issues that may be relevant to your situation:

You may want to consider finding a therapist who can help you talk through your feelings about the diagnosis or one who can help you work on social skills or any other area that may be a concern to you. Look through the Mental/Behavioral Health section of the CAR Resource Directory™ to find someone who can help.

Your recent diagnosis of ASD does not change who you are. But it may help you to understand yourself and your past better. And it may help you take charge of your future. Get started learning more about your new diagnosis today by visiting the CAR Autism Roadmap™. Articles relevant to adulthood can be easily accessed by using the “Age” filter when browsing.




Accommodations and Supports for School-Age Students on the Autism Spectrum

Accommodations and supports are designed to minimize obstacles to learning or participating in the educational environment. The accommodations and supports your child receives will depend on your child’s needs and the goals set in the Individualized Education Program (IEP) or 504 Plan. The list below contains some common ones used with students on the autism spectrum. Many of the supports listed are visual. Often children on the autism spectrum are visual learners, meaning they process information better when it is shown to them. Visual supports can also help children on the spectrum express themselves better.

Make sure to include specifics in your child’s IEP about when and how all accommodations and supports are to be used. And make sure you learn how to use strategies that are used at school at home. Many of the tools used at school will also be helpful at home when used in a consistent manner.

Social Stories™: Social Stories™ describe an event or situation with the intent of explaining the circumstances, perspectives, and expected behaviors that occur during the event or situation. To be effective, Social Stories™ should be highly individualized. Frequently, they may include pictures or photos of the individuals involved. They can be particularly helpful when preparing for an out of the ordinary situation, such as school picture day or a fire alarm, or when preparing for a new or difficult activity, for example, going to a restaurant, on a field trip, to a party, or to the dentist. Once created, a Social Story™ should be read to the individual many times until the expectations conveyed in the story are well understood. Social Stories™ can be created on an iPad® or other electronic device, which may make them more accessible and/or desirable for some students.

Picture Schedules: One of the common features of many individuals on the autism spectrum is the need for routine and structure. Picture schedules provide a visual representation of what is going to happen during the day or within a certain part of the day (for example, the details of a certain activity). They are helpful in reducing worry over “what comes next” and in helping smooth transitions. To be most effective, teachers and caregivers should check off or otherwise indicate when an activity has been completed (or have the child do it)

Choice Boards: Choice boards display a limited number of options for activities. Sometimes individuals on the autism spectrum have difficulty figuring out what to do next. A choice board can help simplify the decision making process and promote independence.

Visual Communication Systems: Every individual on the autism spectrum has difficulty with communication, whether or not they are able to speak. A visual communication system uses picture symbols in place of words and can be useful to some degree with all children, regardless of verbal language ability. Two common visual communication systems are the Picture Exchange Communication System™ (PECS) and sign language.

Behavior Charts/Reward Systems: Behavior charts and reward systems are a good way to positively reinforce desired behaviors. They target only a few behaviors to influence at a time and then keep track of how many times the behavior is achieved by using tokens, stickers, smiley faces, or another visual reminder of accomplishment. When a certain number of tokens are earned, they can be turned in for a larger incentive. Incentives and goals should be constantly monitored to make sure they remain appropriate and encouraging.

Computer Use: Handwriting can be difficult for many children on the autism spectrum. If your child can type faster than he or she can write, it may be a good idea to have your child use a computer to take notes and to complete written assignments. Additionally, computers can be good for organizing materials. Rather than have a folder with handouts, handouts can be emailed to your child or downloaded from a central site, and your child can store them on a computer. A teacher or parent may need to assist the child in coming up with a good organization system for the computer.

Extra Time: Students on the autism spectrum may need longer to accomplish certain tasks than their typically developing peers need. For example, extra time may be provided to take tests or quizzes, to turn in homework and/or projects, or even to get to and from class. Some students on the autism spectrum are dismissed from each class a few minutes early so they can navigate the hallways when they are not so congested. The benefits of early dismissal need to be weighed against the loss of time in the classroom – particularly if the teacher tends to make or explain assignments at the end of class. If it is determined that extra time between classes is needed, an accommodation can be made for how the student is assigned homework (for example, by receiving a sheet that explains the assignment in detail and providing some other time in the day for the student  to ask for clarification).

Organizational Support: Students on the spectrum can confront a number of organizational challenges at school. These can relate to losing or forgetting things (such as losing homework or papers, forgetting to turn things in, not knowing what homework is assigned, coming to class without needed books or supplies, and forgetting permission slips, lunch money, or gym clothes). Organizational challenges may also relate to organization of thought (as required in writing a paper or figuring out order of operations in a math problem). Checklists, folder systems, color-coded class materials, daily binder checks, assignment notebooks, visual prompts, electronic reminders, and graphic organizers can be used to help, if the student is taught how to use them. Don’t try too many new systems at once, however, as this can be overwhelming. Give time for a new system to be learned and become routine before evaluating its effectiveness and trying a new strategy.

Help with Class Notes: If your student has a hard time listening and taking notes at the same time, there may be alternatives to classic note taking. Some students are permitted to tape record class, use another student’s notes, or use the teacher’s outline for the class.

Homework Modifications: Some students on the autism spectrum have a reduced homework load or don’t have any homework at all. Others receive more time to do long term-projects, or have projects assigned in smaller chunks. Some students benefit from seeing a sample project or paper so they can visualize what is expected.

Preferential Seating: Students on the spectrum may be easily distracted in the classroom. Many students benefit from being seated close to where the teacher usually speaks. Others may need to be separated from noisier students or from windows, air vents, or other classroom distractions.

Timers: Depending on the child, timers can be a good way to remind a child it is time to end one activity and begin another. Finding a timer that provides a warning before time expires is ideal. Otherwise, the timer may be anxiety provoking and more of a problem than a benefit.

Communication Book: Children make the most progress when there is good communication between home and school. One way to ensure this is to set up a regular method of corresponding. Communication books are notebooks that travel back and forth from home and school and include short notes by the teacher and parents. Sometimes they include checklists or rating scales to let parents know how the child is doing in school with respect to particular areas being monitored. Teachers can let parents know about the child’s day and provide ways to reinforce learning at home. There should be a place for parents to write about difficulties they are having at home or comment on new strategies or therapies that are working. Everyone is busy, so don’t expect pages of detailed information. The purpose of the communication book is not to provide daily progress on IEP goals. It is to promote an open dialogue between parents and educators.

Fidgets: A fidget is an item that your child can hold that may help with attention, calming, and focus – or, depending on the fidget and the child, it can be a distraction. Examples include a stress ball, string, or a small car with wheels to turn. Fidgets should be saved for situations in which attention is important and should be taken away after the situation ends. Otherwise, they may become common place and lose their desired effect. Also, it is important to constantly reevaluate the need for and effectiveness of fidgets, and to have more than one option at the ready should a beneficial fidget loose its usefulness.

Frequent Breaks: Some students on the autism spectrum are not capable of staying engaged in activities as long as their peers. These children may benefit from breaks outside of the energy of the classroom. Sometimes having a quiet place to go is enough to prepare the student to reengage in the classroom environment. For others, it is the movement – the walk to another part of the school – that is beneficial.

Many of the accommodations listed above are referred to as “Assistive Technology.” Assistive Technology is any item, piece of equipment, or product system, whether modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. Assistive Technology can be low-tech, including laminated picture schedules, or high-tech, such as the use of an iPad® to create Social Stories™ or otherwise help a child transition between activities.

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Protection of Medical Information Under HIPAA

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) protects the privacy of medical records. In general, the HIPAA Privacy Rule, found in Title II of the Act, requires written authorization from a patient (or the patient’s parent or legal guardian) before information may be released to an outside party. It also gives patients the right to look at or request a copy of their medical records, request a correction or change to information believed to be inaccurate or incomplete, and file a complaint with the United States Department of Health and Human Services Office for Civil Rights when privacy rules have been violated. If you request a copy of your medical records, the healthcare provider may charge for reasonable costs for copying and mailing the records, but it may not charge you a search or retrieval fee.

HIPAA applies to almost all healthcare providers, as well as health insurance companies, and many other organizations which may come in contact with medical records in the regular course of business. However, it does not apply to employers, life insurance companies, workers compensation carriers, most schools and school districts, many state agencies (like child protective services), most law enforcement agencies, and many other municipal offices, who may have access to certain health information.

The Privacy Rule applies to all forms of an individual’s Protected Health Information (PHI), regardless of whether it is electronic, written, or oral. This includes information your healthcare providers put in your medical record, conversations your doctor has about your care or treatment with nurses and others, information about you in your health insurer’s computer system, and billing information. However, you do not have the right to access a provider’s psychotherapy notes, although the therapist, in most cases, may not disclose psychotherapy notes about you without your authorization. Psychotherapy notes are notes taken by a mental health professional during a conversation with the patient; they are kept separate from the patient’s medical and billing records.

When you sign up for a new health plan and when you first see a medical provider, you should be provided with a copy of the organization’s Notice of Privacy Practices. The document is usually handed to you, or it may be made available to you online. You should read the Notice to learn how your healthcare provider or insurer is allowed to use or share your health information, your privacy rights, how your health information will be protected, and whom to contact for more information about the privacy policies. You may be asked to sign an “acknowledgement of receipt” to show that you have been given a copy of the Notice.

There are some exceptions to the Privacy Rule, which allow a healthcare entity to:

  • Use and share information with doctors, nurses, and others who are needed to treat you;
  • Share information with health insurance companies for billing purposes;
  • Use information to review quality of services;
  • Share information with local health departments to report certain contagious diseases; and
  • Share information with local authorities to prevent abuse or neglect or if the patient was a victim of a crime.

Additionally, your healthcare provider may share information with others (1) if you give permission for them to do so; (2) if you are present and do not object to sharing the information (for example, you bring a friend with you to the appointment); or (3) if you are not present, and the provider determines that it is in your best interest to do so (for example, you send a friend to pick up a prescription for you or you are unconscious and your family member needs information).

Even if you request that your medical information be shared with someone else, however, your healthcare provider is not required to share your information with anyone other than you or your personal representative. Who is a “personal representative” is usually controlled by state law, and may include someone with a healthcare power of attorney, a parent of a child under 18, or a legal guardian.

HIPAA and Minor Children

There are four primary exceptions to the general rule that a parent is the personal representative of a minor:

  • The minor is emancipated (has a court order declaring him or her competent to make decisions for him or herself and no longer in need of a guardian).
  • State law allows the minor to consent to the healthcare service without the consent of a parent or guardian and the minor consents on his or her own (for example, with respect to treatment for substance abuse, sexually transmitted diseases, or pregnancy).
  • A court authorized the medical treatment through a judicial by-pass (for example, when a minor seeks an abortion without parental consent).
  • The parent or guardian agreed to confidentiality between the healthcare provider and the minor.

In these instances, the minor child controls the release of the records related to the particular service, and the parent or guardian may not obtain the records without the child’s agreement.

HIPAA and Adult Children with Disabilities

Once a child turns 18 years of age, the parent is no longer the personal representative. If a parent believes that the adult child needs assistance with healthcare, the parent should ask the child to sign a healthcare power of attorney. This will usually ensure that the parent can stay involved in medical decisions for the adult child with a disability.

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The Affordable Care Act (also known as ObamaCare) and Other Federal Insurance Assistance Programs

In 2014, families across America began to experience a new healthcare system, known as the Affordable Care Act (ACA), or colloquially as “ObamaCare” (because the ACA was an initiative of President Barack Obama).

The ACA is implemented differently in different states. In general, individuals may choose a healthcare plan by shopping in the “Healthcare Marketplace.” The Marketplace is an online shopping terminal (though information can be accessed over the phone and sent by mail). In Pennsylvania, a child’s autism-related services are not covered by programs in the Marketplace and should be covered by private health insurance, the Medical Assistance (MA) program, or the Children’s Health Insurance Program (CHIP) under Pennsylvania’s Autism Insurance Act (ACT 62). The following Q & A applies to Pennsylvania currently (2020).

Can State-mandated autism insurance be accessed through the Healthcare Marketplace?

No, at this time there is no communication between mandated insurance options and the Marketplace. Autism mandated coverage remains limited and can be very different depending on the insurance carrier. For more information about accessing state-mandated autism insurance, please go to the following article within the CAR Autism Roadmap™:

How do you apply for Medical Assistance (MA) for a child with a developmental disability, such as Autism Spectrum Disorder?

The MA application process has not changed. The new health insurance Marketplace is not affecting the application process or the way MA insurance is being dispensed. The CAR Autism Roadmap™ contains directions on how to access MA in the following articles:

Is CHIP, the Children’s Health Insurance Program, affected by the new health insurance system?

Yes, CHIP is part of the Healthcare Marketplace. Child-only commercial plans within the Marketplace will be available for those who do not qualify for Medical Assistance (MA). A child may not qualify because they do not meet MA disability criteria. More information about CHIP can be found in the CAR Autism Roadmap™:

Can Supplemental Security Income (SSI) for an 18 year old (child) transitioning to adult status be accessed through the Marketplace?

No, the application process for SSI remains the same and is not accessible through the Marketplace. For more information and instructions, go to the following article within the CAR Autism Roadmap™:

Can adults apply for Social Security Disability Insurance (SSDI) through the Marketplace?

No, at this time there is no way for SSDI to be accessed through the Marketplace. To learn how to access this coverage, please go to the following article within the CAR Autism Roadmap™:

Is Medicaid still available to adults who have a disabling condition?

Yes, adults who have first applied and been approved for Social Security Income (“SSI”) (age 18 years or older, unable to work/disabled, earn less than $1,000.00 per month) may subsequently qualify for Medicaid. To learn more about these programs, read the following articles within the CAR Autism Roadmap™:




Making Community Outings Safer – How to Obtain Handicapped Parking

Parents and primary caretakers of children with significant developmental disabilities may be eligible for disability placards, allowing them to park in handicapped parking spaces. These parking spaces are more convenient and closer to the entrance to the doctor’s office, the supermarket’s front doors, the movie theater, etc. Criteria, although similar, are determined individually from state to state.

Common criteria include:

  • Sight impairment; blindness
  • Does not have use of a limb, in particular an arm
  • Cannot walk without assistance or use of assistive device, such as a brace, crutch, etc.
  • Breathing restriction because of lung disease; uses portable oxygen
  • Functional limitations due to cardiac condition
  • Severe limited ability to walk due to arthritis, neurology, or orthopedic condition
  • Responsible for transporting a person with one of the above mentioned disabilities

The criteria that allow families of children with a diagnosis of Autism Spectrum Disorder to access a disability placard are bolded.

Each state provides an application, accessible online, for parking placards. As part of the application process, the individual’s disability must be certified by a healthcare provider. Parents wishing to obtain a parking placard should ask the healthcare provider to discuss issues of safety within a certification letter.

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Elopement

A leading cause of concern for many parents of children on the autism spectrum is that they may accidentally run or wander away. This is also called elopement. The time to address elopement is before it becomes an emergency. Elopement may happen at any age.

How can I keep my child safe?

The following are some tools and ideas to help you plan for and prevent your child from wandering away from your home:

  • Install a home security alarm system.
  • Install inexpensive battery-operated alarms on doors and windows to alert you when they are opened. These are available at stores like WalMart and Radio Shack®.
  • Place hook and eye locks on all doors, above your child’s reach.
  • Fence in the yard.
  • Plan a brief visit to your neighbors and introduce your child (or show them a photograph). Give them your phone number in case they spot your child outside of your yard.
  • Install secure dead bolt locks that require keys on both sides. (This can be a fire hazard so try other options first.)

When planning for or responding to any safety emergency, consider the following:

  • Will your child respond to his or her name being called?
  • Will your child go with a stranger?
  • Does your child have a fear of cars or animals or is he or she drawn to them?
  • Does your child have a fear of or is he or she drawn to water (for example, fountains and pools)?

My child is at risk for eloping. What other protections are available?

  • Consider a Medical Identification Bracelet for your child. There are a number of different types, which can be purchased online. The bracelet should include your name and your child’s name and telephone number. It should state that your child has autism and is non-verbal, if applicable. If your child will not wear a bracelet or necklace, consider a temporary tattoo with your contact information. You may also want to consider writing your child’s information in his or her clothing using permanent marker.
  • Consider a personal tracking device. Some consist of a small unit that is put in a child’s pocket or backpack and works with your computer or mobile phone so that you can monitor your child’s location. Others involve a handheld unit for the parent which tracks the location of the child’s wristband. Some units work with local law enforcement and rescue personnel. The tracking distance for the devices varies considerably and ranges from 300 feet for parent monitored units to one mile on the ground and 5-7 miles from the air for those monitored by rescue personnel. Some systems include waterproof tracking devices. Prices range from around $200 for some parent monitoring units to several thousands of dollars for units tied into local rescue personnel. Many local law enforcement agencies have experience using units for tracking residents on the autism spectrum or those with Alzheimer’s and Down’s Syndrome, so check with your local law enforcement agency for a compatible system.
  • Don’t forget behavioral training for safety. In addition to the safeguards mentioned above, work with your behavioral specialist and school personnel to develop behavior plans to shape your child’s behavior for safety. Training and reinforcement in specific, common situations, such as leaving school and arriving at home, getting into and out of the car, and going to neighborhood locations can help your child learn to stay near you in public. Safety goals can be written into your child’s Individualized Education Program (IEP).

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Workplace Accommodations and Supports for Autistic Individuals

Supports for individuals in the workplace can take the form of job accommodations and adaptations. Some commonly used supports are listed below. If you are an individual on the autism spectrum, you may need to self-advocate in order to receive one or more of these. If it is difficult for you to self-advocate, consider working with a counselor or job coach who can help you figure out how to ask for supports or who can advocate on your behalf.

To address communication issues – If it is difficult to remember instructions given verbally, request to have instructions communicated in writing. For example, instructions can be delivered by email. Questions can be submitted online, resulting in a written record, which can be used for review, as needed. Another possible accommodation may be “recorded verbal instructions.” These recordings can be listened to whenever necessary.

To prepare for sensory sensitivities – Determine what sensitivities exist and consider ways to avoid them. For example, if the florescent lights are a problem, have a workstation near a window, allowing for natural light, or bring in an incandescent lamp to the work area. If there is annoying noise, consider wearing headphones to block it out. If odors are an issue, consider positioning your workstation away from the kitchen and food smells, etc.

To address behavioral concerns – Consider limiting the day to the time frame that the behavior can remain in check, and expand work hours slowly as appropriate. Perhaps working a shorter day or working fewer days per week may be helpful initially. A job coach and/or work mentor can set up a reward system for appropriate work behavior and help develop a plan to extend work hours gradually over time, or not. Part-time work may be appropriate for some individuals who are not able to work a full day.

To support organizational needs – Ask the employer to provide samples of the work at various stages. Perhaps the beginning – before the work is assembled, in the middle – partially assembled, and at the end – a completed product. Or ask the employer to provide pictures of the work organized at various stages to help provide a visual model of what is expected. A posted calendar can be useful to guide the various stages of the project to completion.

To prepare for transition difficulties – Plan for unexpected changes. A “back–up plan” can be in place to anticipate when a change in schedule might occur. For example, “I have a meeting with Sally every Monday at 1 pm; if Sally is not here, I will do data entry work and meet with her the following Monday at 1 pm” or “if Sally is not here, I will meet with Joe.” Additionally, if there is a drastic change in schedule, such as office training or a retreat day, it needs to be planned for. Maybe the dress code is different for that day, or this different day is only a half-day program. The autistic individual needs to know what to expect, and the differences need to be planned for, from the location change, dress code change, the types of activities, to the fact that joking and poking fun may be part of the program. The autistic individual needs to know what may be expected of him or her, whether that means participating in various activities as part of a team or individually. Careful planning can minimize the misinterpretation of remarks or actions and can avoid bad or sad feelings due to not understanding the different social expectations and behavior.

To ensure the individual can get to work – Develop a practical way to travel to the workplace. (Public transportation, handicap transport, and family transport are all possibilities.) Prior to beginning employment, make sure the employee has practiced the method until he or she is comfortable with it. If the individual needs a pass or tokens to travel, develop a plan for where to carry and store the pass/tokens after using them. (For example, always keep them in a particular zipped pocket in a backpack that travels each day with the individual.) A job coach can help develop this plan.

To address physical needs – An individual can work in a study carrel or other more private space to help avoid distractions. The individual may benefit from using specific office supplies to improve work product, such as an electric stapler and paper guide to keep a stack of papers neat before fastening them together. Some individuals may need more physical space than other employees in order not to feel “closed in.”

To support pro-social behaviors – Practice and provide reminders of basic social principles. For example, say “good morning” or “good afternoon” as appropriate, hold the door for a colleague coming down the hall, take turns at the water cooler, and wait for your turn to speak. If it is difficult for an individual to respond to social chatter during the work day, he or she can be encouraged to request to have the discussion during a break time or lunch hour. A job coach can be very useful in practicing these skills and finding ways to support this area of need in the workplace.

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What to Expect from OVR

Your state’s Office of Vocational Rehabilitation (OVR) provides vocational services to help individuals with disabilities – including Autism Spectrum Disorder (ASD) – to prepare for, obtain, and retain employment. Each state receives funding from the federal government, which is supplemented by state funding. OVR eligibility requirements vary by state as do the specific services offered by each state.

In general, OVR can help you:

  • Figure out what kind of job you want;
  • Figure out what skills you have;
  • Determine what accommodations you might need to succeed at work;
  • Identify other resources to help you;
  • Create and follow a plan to reach your employment goals.

To apply for OVR services, contact the nearest district office in your state. You can find this contact information in the blue pages of a telephone book, online, or, for some areas in Pennsylvania, New Jersey, and Delaware, within the Resource Directory of the CAR Autism Roadmap™. After you apply, you will undergo an evaluation. It takes about 60 days to learn if you are eligible for services. You should know that even if you are eligible, there may be a waiting list before you can begin.

In general, in order to qualify for services, OVR must determine that:

  • You have a physical or mental disability;
  • Your disability causes a barrier to employment;
  • You have the ability to benefit from services to prepare for, obtain, or retain employment; and
  • You want to work.

If you qualify for OVR services, you and a vocational counselor will develop an individualized plan for employment (IPE). The IPE will specify what services will be provided and what both you and OVR must do. Sometimes you may be asked to contribute to the cost of services. This will be discussed before any services begin.

Services available through your local OVR may include:

  • Diagnostic services to help you better understand your diagnosis and how it affects your ability to work and your need for services;
  • Vocational evaluations to measure your aptitude, interests, abilities, areas of weakness, and work preferences; a vocational evaluation could include a work trial to observe how you perform at a job site;
  • Counseling to help you set realistic vocational goals and develop successful work habits;
  • Skill training to prepare you for a job;
  • Training to help you with life skills, such as getting to and from work;
  • Placement assistance, including help with finding job openings, pursuing job leads, filling out applications, writing a resume, and interviewing;
  • Assistive technology, if needed;
  • Job coaching.

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Homeschooling

Homeschooling (also known as home education and home-based learning) is the education of children at home instead of in a public or private school. Instruction is typically overseen by parents and may be provided by parents, a consortium of parents, tutors, or the internet. Some districts will also allow homeschooled students to take courses at the local public school. The U.S. Government recognizes homeschooling as a right. Therefore, some form of homeschooling is allowed in all U.S. states.

State laws pertaining to homeschooling vary greatly. Therefore, it is important to consult your state and your local district before beginning a homeschooling program. Because all states have compulsory attendance laws, it is important to let your school district know you plan to homeschool. There are different registration requirements that your district may require. For example, you may have to file a notarized affidavit that promises that you will make sure your child meets your state and district’s homeschooling requirements. Some states vary on whether standardized testing and documentation of schooling hours or a “portfolio” is required to obtain a high school diploma. In 2014, the state of Pennsylvania enforced an amendment to the homeschooling statute to include a new law, Act 196, which eliminates submission of portfolios for review by a superintendent and administration of standardized testing in 3rd, 5th, and 8th grades as requirements for obtaining a Commonwealth-issued diploma. Instead, Act 196 now requires more significant accountability on behalf of superintendents to ensure appropriate education is being implemented. Act 196 also gives parent-issued diplomas the same educational status as Commonwealth-issued diplomas.

Most states (including Pennsylvania) allow parents some control over deciding what to teach in a homeschool. A homeschool may emphasize a particular topic, including religion. Many parents choose to adopt the curriculum used by their local school. In Pennsylvania and many other states, parents may borrow copies of the school district’s materials to use in the homeschool program. In Pennsylvania, these materials are provided free of charge. Materials may also be obtained from the library, online, or purchased.

If your child has been identified as needing special education, there may be additional homeschool regulations that apply. For example, in Pennsylvania, parents must show that the homeschool program addresses the specific needs of the child, and the program must be approved by a teacher with a state special education certificate or by a licensed clinical psychologist or certified school psychologist. This can be achieved by utilizing additional resources to create an IEP (Individualized Education Plan), ISP (Individualized Service Plan), or SEP (Student Education Plan). Districts in Pennsylvania may choose to provide special education services to homeschooled students, but they are not required to do so.

Most states, including Pennsylvania, do have some mandatory courses that homeschooled students must take. These typically include spelling, reading, writing, science, geography, social studies, math, and health and safety. Some states offer a state-recognized graduation diploma for homeschooled students. In states that offer this (including Pennsylvania), there will be specific courses required for graduation.

Some parents join homeschool consortiums or cooperatives. These are groups of families who all homeschool their children. The children may meet on occasion for group instruction, which is provided by one of the parents or a selected tutor, and/or to go on field trips or to participate in extracurricular activities. In addition to exposing the children to different “teachers,” this gives homeschooled children the opportunity for social interaction.

Social interaction may also happen at the local public school through extracurricular activities. In Pennsylvania and some other states, homeschooled students must be allowed to participate in clubs, musical groups, athletics, and other school district opportunities to the extent they are otherwise eligible to take part (for example, trying out for and landing a role in the school play).

Related Articles:

Additional Resources:




Finding Support from Friends and Family After a Diagnosis

So… you just found out your child has a diagnosis of Autism Spectrum Disorder (ASD). You may feel overwhelmed and have all sorts of feelings. Now more than ever, you need the support of your close friends and family. It is not uncommon that parents in your position feel frustrated by the reactions of those closest to them when they disclose their child’s new ASD diagnosis.

This is a time when most friends and family members simply don’t know how to help you and do not know what to do. Remember ASD may be new to them. Give them the benefit of the doubt and help them to help you.

Grandparents, siblings, other relatives, and close friends may be going through a similar grieving process as you are. It is not unusual to hear, “He seems fine to me,” or “He is just like you were when you were that age!” These remarks can be infuriating, but remember these are denial statements from those who love you who are struggling with the new ASD label too. Your friends and family are most likely concerned for both you and your child. Because they are not with your family 24/7 they do not share your vision and your struggles on a day to day basis. It might take them longer to arrive at acceptance.

It can be challenging to cope with your own feelings while simultaneously convincing those close to you that the diagnosis is real. Consider telling your friends and family what you need them to do for you and how they can help. Suggest specific babysitting times so you can have some time for yourself, suggest they send over a favorite meal or run an errand, or just simply ask them to listen and not try to convince you that what your child and you are going through is not real. Ask for some time with them where you don’t talk about autism, so you can deal with your own feelings without having to worry about theirs.

Many families are comforted by the company of those who also have children with ASD diagnoses. Parents of children who are newly diagnosed often hear similar remarks from their loved ones, and it is comforting to share stories and come up with strategies to cope with situations. This is support at its finest!

Consider attending parent group meetings and subscribing to online listservs. To find them, search for family support groups in the Resource Directory of the CAR Autism Roadmap™.

Don’t forget to laugh. Situations can be quite comical, and laughter is a great stress reliever!

Related Articles:

Recommended Link:

Additional Resources:




CHADD

Provides education, advocacy, and support for individuals with ADHD and their families; Online support group




It Takes a Village to Build a Team

In life, every one of us needs a village (or a team) to turn to, to feel a part of, to have a connection with, and to give and receive support from. If there is a child with learning needs in the family, members of this village can be a lifeline for the caretakers. Village members usually include: a spouse, best friend, neighbor, extended family members, etc. These are the individuals who provide a listening ear, a knowing nod, occasional child care, and perhaps even a meal. There are also professional members of the village who can offer invaluable support. These can include a special educator, pediatrician, therapist, etc. These caring individuals can offer helpful suggestions about teaching a child in school, ideas about developing an Individualized Education Program (IEP) goal, and ideas to build motivation, in addition to having a listening ear when you need one.

How do you build your team? Who should you invite, and how do you invite them in? Where can these people and/or groups be found?

It’s all about open and honest communication….

Confide in your partner and other close family members who share your concerns. Be on the “same page” with your significant other, voice your worries, listen to your partner’s thoughts, and support one another. Prioritize your concerns together; make a “to do” list and plan!

Invite a trusted friend for a cup of coffee, and talk things over. Confide in family members and include those who rally and help you with what you need. People who offer to prepare a meal or help out with child care are those you want on your team, not those who tell you what to do or how to do it.

A professional counselor or therapist can help separate real concerns from imagined worries and help develop ways to cope with those difficult tasks of life. (Lists of professionals can be found in the CAR Autism Roadmap™ Resource Directory.)

Parent support groups can play a major role to help you learn what is available in your community. Local neighborhood parent support groups can be found through your child’s school or through websites, including this one. (Check out the CAR Autism Roadmap™ Resource Directory to find the group closest to you.)

National and local groups offer support at meetings online and by sponsoring family events. Find a list of national organizations below.

In all the dealings you will have with the education, medical, and behavior health systems, and with all the organizations you will interface with, there will be those individuals who will stand apart from the crowd; those you will feel a special connection with; those who will have your child’s interests at heart. You will feel their trust and their sincerity. These will be your “go to people,” the ones you will discuss your thoughts with, the ones you can be relaxed with, whose opinions you will value.

When there is a child with learning needs, members of the “village” (or team) can be a lifeline to a family. These are the relationships to cultivate and to nurture.

Related Articles:

Recommended Link:

Additional Resources:




Autism Child Care Connection

Events and online support for families with children diagnosed with ASD




Obtaining a Handicapped Placard

Parents and primary caretakers of children with significant developmental disabilities may be eligible for disability placards, allowing them to park in handicapped parking spaces. These parking spaces are more convenient and closer to the entrance to the doctor’s office, the supermarket’s front doors, the movie theater, etc. Criteria, although similar, are determined individually from state to state.

Common criteria include:

  • Sight impairment; blindness
  • Does not have use of a limb, in particular an arm
  • Cannot walk without assistance or use of assistive device, such as a brace, crutch, etc.
  • Breathing restriction because of lung disease; uses portable oxygen
  • Functional limitations due to cardiac condition
  • Severe limited ability to walk due to arthritis, neurology, or orthopedic condition
  • Responsible for transporting a person with one of the above mentioned disabilities

The criteria that allow families of children with Autism Spectrum Disorder to access a disability placard are bolded.

Each state provides an application, accessible online, for parking placards. As part of the application process, the individual’s disability must be certified by a healthcare provider. Parents wishing to obtain a parking placard should ask the healthcare provider to discuss issues of safety within a certification letter.

Additional Resources:




Safety Basics for Families Living with ASD

All parents worry about how to keep their children safe. When your child is on the autism spectrum, safety becomes an even greater concern. Parents of a child on the autism spectrum need to develop safety plans. These plans should be based on how well your child can communicate, his or her personal interests, and sensory issues.

Have regular and frequent safety talks with your child. Many children on the autism spectrum learn from repetition, so repeating rules, expectations, and plans can be beneficial. When you teach safety rules, make sure to list where to use the rules, such as school, the park, or a store. If your child likes to wander or likes to play in water, make sure to spend extra time talking about those safety rules.

Having a plan can help you to find your child if he or she is missing. The first step in your plan should be increasing awareness both in your child and those around him or her.

Have your child practice what to do if he or she is lost. If your child is not verbal or would have trouble telling others that he or she is lost, a bracelet or other product can give responders helpful information. Make sure your child practices how to show the product.

If your child tends to wander away, make sure that all family, caretakers, and school staff know of this pattern. Give them a plastic-coated card with your child’s name, current picture, diagnosis, emergency contact numbers, and what your child does and does not respond well to. Also talk to your neighbors and local police about your child’s tendency to wander and give them the same up-to-date information. Most police stations have systems, such as the PREMISE Alert System, where you can submit a file for your child with special needs and include important information for responders.
Water is another top safety concern. Check all gates, pool covers, toilet locks, and any other safety devices, especially if your child is drawn to water. When your child can start swimming lessons varies, but being able to swim independently is only one benefit of lessons. Children also learn basic water safety rules through early childhood swim programs. Many programs offer adaptive swim lessons for children on the autism spectrum. These programs are a great way for your child to learn about water safely and comfortably.

The Safety Center at CHOP is able to suggest and provide safety products at an affordable price. The health educators within the center can help families with several different product types, including transportation (for example, car vests and seat belt adjusters), home (gates, alarms), and identification (cards, bracelets). The Safety Center is located on the first floor of CHOP’s Main Building and is open weekdays from 10 am to 4 pm. The Safety Center is available by phone at 267-426-5000.

Related Articles:
When to Call 911?
Water Safety
Elopement
Stranger Danger

Recommended Link:
CAR Resource Directory (search under topic of Safety)

Additional Resources:
A Guide to Safety, from the Organization for Autism Research
CHOP Safety Center
Safety in the Home, from the Autism Society of America
Safety Products, from Autism Speaks
Safety Tips, from Autism Speaks
Philadelphia Police Premise Disability Form
Chester County Premise Online Form
General Premise Alert Form, approved in PA
Premise Alert Form, Spanish
Vacation Premise Alert Form
PA Premise Alert FAQ




Getting Around: It’s A Matter of Independence

Part of transitioning to adulthood includes taking steps to make sure you can live as independently as possible. Part of being independent includes being able to get to where you need to go. Driving oneself may be an option for some autistic adults; others use paratransit, which is available to people with disabilities who are functionally unable to use regular fixed-route transportation. However, many autistic individuals rely on public transportation, like subways, buses, and trains, to get from place to place.

Navigating public transportation can seem daunting at first. How do you figure out the schedules? What happens if things don’t go as planned? Travel training (also called travel instruction) can help you learn to use public transportation and know what to do when surprises happen.

The Individuals with Disabilities Education Act (IDEA) and its regulations include travel training in the definition of special education. Travel training is instruction that enables students with disabilities to develop an awareness of the environment in which they live and to learn the skills necessary to move effectively and safely from place to place within that environment.  Travel training is often included in the transition plan included in a student’s Individualized Education Program (IEP) as it is a necessary component for preparing a student for employment and independent living in the community.

Travel training usually consists of both classroom-based and community-based instruction. A student will learn how to use maps and schedules for trip planning, which are often available as a paper brochure and online (perhaps even in a smart phone app that can alert the user to when trains are running late or are canceled). The student will also learn how to purchase tickets, including both the exchange of payment and communicating with transportation employees. Safety precautions will be taught (for example, how to cross streets, how to recognize and respond to danger, how to recognize the need for assistance and request help from an appropriate source), and scenarios, such as delayed trains, trains that don’t make anticipated stops, going the wrong way, and getting off at the wrong stop, will be role-played. In the community, students practice the skills, while accompanied by a travel instructor, who will fade support as the student is ready.

In addition to instruction provided at school as part of an IEP, travel instruction can also be obtained through other organizations. Some public transportation entities may provide some instruction, though the training may not be as thorough as you may need. The Federal Transit Administration funds and Easter Seals administers Project ACTION (Accessible Community Transportation in Our Nation), a national technical assistance center on accessible transportation, which provides training for schools, parents, and other service providers on the implementation of travel, and includes various webinars and tool kits on its website.

Related Articles:

Additional Resources:




Supports for School Personnel

Supports for School Personnel are supports given to teachers or other professionals at the school to help them to be more effective in working with your child.

One example is providing extra training to teachers to help them understand and work with students on the autism spectrum. Sometimes, intensive training is necessary. In these situations, an autism consultant can be brought to the school to help teachers and staff learn teaching and behavioral strategies. When intensive training is not necessary, teachers may benefit from attending an educational conference. Depending on where you live, there may be conferences close-by that education staff can attend to learn more strategies for working with your child and other children with similar difficulties. There are also online courses available through the state and federal government or education and autism non-profit organizations. Sometimes, getting funding for additional training or getting the time off to attend a conference can be difficult for teachers unless additional training is specified in an Individualized Education Program (IEP) for them.

Another example of a Support for School Personnel that is sometimes seen in IEPs for students on the autism spectrum is providing the child’s teacher with an extra block of free time to prepare alternate materials or assessments or to hold co-planning or team meetings. Particularly in public schools, where teacher time is regulated by union agreements, teachers may have a limited amount of time outside of the school day when they can hold meetings. Building this time into the teacher’s schedule by mandating it through an IEP may ensure that the school recognizes the extra effort required by teachers and plans accordingly.

Related Articles:




Travel Instruction: It’s a Matter of Independence

Part of transitioning to adulthood includes taking steps to make sure you can live as independently as possible. Part of being independent includes being able to get to where you need to go. Driving oneself may be an option for some adults on the autism spectrum, while others use paratransit, which is available to people with disabilities who are functionally unable to use regular fixed-route transportation. However, many autistic individuals  rely on public transportation, like subways, buses, and trains, to get from place to place.

Navigating public transportation can seem daunting at first. How do you figure out the schedules? What happens if things don’t go as planned? Travel training (also called travel instruction) can help you learn to use public transportation and know what to do when surprises happen.

The Individuals with Disabilities Education Act (IDEA) and its regulations include travel training in the definition of special education. Travel training is instruction that enables students with disabilities to develop an awareness of the environment in which they live and to learn the skills necessary to move effectively and safely from place to place within that environment.  Travel training is often included in the transition plan included in a student’s Individualized Education Program (IEP) as it is a necessary component for preparing a student for employment and independent living in the community.

Travel training usually consists of both classroom-based and community-based instruction. A student will learn how to use maps and schedules for trip planning, which are often available as a paper brochure and online (perhaps even in a smart phone app that can alert the user to when trains are running late or are canceled). The student will also learn how to purchase tickets, including both the exchange of payment and communicating with transportation employees. Safety precautions will be taught (for example, how to cross streets, how to recognize and respond to danger, how to recognize the need for assistance and request help from an appropriate source), and scenarios, such as delayed trains, trains that don’t make anticipated stops, going the wrong way, and getting off at the wrong stop, will be role-played. In the community, students practice the skills, while accompanied by a travel instructor, who will fade support as the student is ready.

In addition to instruction provided at school as part of an IEP, travel instruction can also be obtained through other organizations. Some public transportation entities may provide some instruction, though the training may not be as thorough as you may need. The Federal Transit Administration funds and Easter Seals administers Project ACTION (Accessible Community Transportation in Our Nation), a national technical assistance center on accessible transportation, which provides training for schools, parents, and other service providers on the implementation of travel, and includes various webinars and tool kits on its website.

Related Articles:

Additional Resources:




Tools for Meeting Life’s Challenges

An educational non-profit organization that provides resources, support and advocacy, in-person and online to people with disabilities, their families, at no charge

Social Work Staff: Joe Scullin, MSW

 




Tools for Meeting Life’s Challenges

An educational non-profit organization that provides resources, support and advocacy, in-person and online to people with disabilities, their families, at no charge

Social Work Staff: Joe Scullin, MSW

 




Tools for Meeting Life’s Challenges

An educational non-profit organization that provides resources, support and advocacy, in-person and online to people with disabilities, their families, at no charge

Social Work Staff: Joe Scullin, MSW

 

 

 

 




What to Expect from the Office of Vocational Rehabilitation

Your state’s Office of Vocational Rehabilitation (OVR) provides vocational services to help individuals with disabilities – including Autism Spectrum Disorder (ASD) – to prepare for, obtain, and retain employment. Each state receives funding from the federal government, which is supplemented by state funding. OVR eligibility requirements vary by state as do the specific services offered by each state.

In general, OVR can help you:

  • Figure out what kind of job you want;
  • Figure out what skills you have;
  • Determine what accommodations you might need to succeed at work;
  • Identify other resources to help you;
  • Create and follow a plan to reach your employment goals.

To apply for OVR services, contact the nearest district office in your state. You can find this contact information in the blue pages of a telephone book, online, or, for some areas in Pennsylvania, New Jersey, and Delaware, within the Resource Directory of the CAR Autism Roadmap™. After you apply, you will undergo an evaluation. It takes about 60 days to learn if you are eligible for services. You should know that even if you are eligible, there may be a waiting list before you can begin.

In general, in order to qualify for services, OVR must determine that:

  • You have a physical or mental disability;
  • Your disability causes a barrier to employment;
  • You have the ability to benefit from services to prepare for, obtain, or retain employment; and
  • You want to work.

If you qualify for OVR services, you and a vocational counselor will develop an individualized plan for employment (IPE). The IPE will specify what services will be provided and what both you and OVR must do. Sometimes you may be asked to contribute to the cost of services. This will be discussed before any services begin.

Services available through your local OVR may include:

  • Diagnostic services to help you better understand your diagnosis and how it affects your ability to work and your need for services;
  • Vocational evaluations to measure your aptitude, interests, abilities, areas of weakness, and work preferences; a vocational evaluation could include a work trial to observe how you perform at a job site;
  • Counseling to help you set realistic vocational goals and develop successful work habits;
  • Skill training to prepare you for a job;
  • Training to help you with life skills, such as getting to and from work;
  • Placement assistance, including help with finding job openings, pursuing job leads, filling out applications, writing a resume, and interviewing;
  • Assistive technology, if needed;
  • Job coaching.

Related Articles:

Recommended Link:

Additional Resources:

 




Autism Community and Care Connection

Events and online support for families with children diagnosed with ASD




Wrightslaw

Online special education resources; Special education trainings




Delco Family PASS

Support group for parents of children with autism; Social events and twice annual speaker meetings; Online support for parents




CHADD

Provides education, advocacy, and support for individuals with ADHD and their families; Online support group




Qualifying for Supplemental Security Income as an Adult with ASD

There are several different government programs that help to support and care for individuals who are not able to support and care for themselves. Eligibility for these programs needs to be established; it is not a given. The following article explains one government benefit – Supplemental Security Income (SSI). You may also want to read other articles within the CAR Autism Roadmap™ to learn about Social Security Disability Insurance (SSDI) and Medicaid.

Supplemental Security Income (SSI) is a financial benefit funded by tax revenues to help aged, blind, and disabled people, who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter.

An adult with a disability can be eligible for SSI by meeting the following conditions:

  • age 18 years or older
  • unable to work/disabled
  • earns less than $1,000.00 per month

You can apply for SSI by contacting your local Social Security Administration (SSA) field office. You may apply by:

  • completing the application online, or
  • calling for an appointment and applying at your local SSA office, or
  • applying over the phone at 1-800-772-1213; if you are deaf or hard of hearing, you can call TTY 1-800-325-0778

An adult with a disability may apply, or the adult may appoint a representative (a parent, for example) to assist in the application process.

Proving Disability

To verify your inability to work, you will need to prove that you have a disability. The federal government defines “disabled” as someone who is:

“Unable to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than twelve months.”

To prove that you are disabled, you will need to provide the SSA field office with the following information:

  • description of the impairment(s)/disability
  • who and where you are being treated for the disability
  • any other information that relates to the disability

The local field office then sends the information to a Disability Determination Services (DDS) office to evaluate the disability. The DDS offices are state agencies that are responsible for gathering medical information and making the initial decision about whether the applicant is disabled. (Though state agencies, these offices are funded by the federal government.)

Usually, the DDS gathers evidence from the applicant’s own medical sources. If that evidence is unavailable or insufficient to make a determination, the DDS will arrange for an independent evaluation for a consultative examination (CE) to obtain the additional information needed.

After all the information is collected, the decision about disability is made at the state DDS office, and the case is sent back to the local SSA office for next steps.

Proving Financial Eligibility

A means-test will be used to determine your financial eligibility. The government will check your personal finances and may request detailed records, past tax filings, and other paperwork. Individuals who qualify for SSI own few resources. There are strict limits on the assets an individual may have. For example, your assets may not exceed the following limits:

  • savings and/or checking accounts totaling up to $2,000
  • life insurance with a face value of up to $1,500
  • burial funds up to $1,500 (or irrevocable pre-paid funeral expenses; burial plots for immediate family are also allowed)
  • one car of a reasonable value so long as it is used for your household’s transportation needs
  • furniture and household goods of reasonable value
  • a house or condo, regardless of its value, as long as you live there

The SSA does not count the following income when deciding SSI eligibility:

  • the first $20 per month of most income from any source
  • the first $65 per month of most earned income, and half of any earned income more than $65 per month
  • food stamps
  • home energy assistance under certain conditions
  • food, clothing, and shelter from certain private non-profit organizations approved by the local SSA office
  • funds within a qualifying special needs trust held for the benefit of an individual with a disability

If you have sold assets or made gifts to individuals in an attempt to become financially eligible for SSI, you will not be allowed SSI benefits.

Also, if a parent pays “child support” to a former spouse which is to be for the benefit of an adult child with a disability, the child support is an asset of the child and will be considered when determining the adult child’s financial eligibility for SSI, regardless of if the support was paid to the child’s other parent. (However, placing the support funds in a qualifying special needs trust may keep the funds from counting toward the adult child’s income for purposes of SSI.)

Conclusion

If you are at least 18 and are found to be disabled and financially eligible for SSI, your local SSA field office will calculate your benefit amount and begin paying benefits to you. If you are found ineligible, you may appeal that determination with the local SSA.

Related Articles:

Additional Resources:




Driving and Autism

For autistic teens and young adults, the decision to pursue a driver’s license is a milestone that other families might take for granted as a natural rite of passage. We rely on transportation to get to work or school, to shop, to see the doctor, and to participate in community and social events. If driving is not the best option for a teen, other options must be found to give autistic individuals access to community activities, employment, and social relationships.

According to research conducted at Children’s Hospital of Philadelphia (CHOP), 2 in 3 autistic adolescents without intellectual disability are interested in driving, but only 1 in 3 autistic individuals without intellectual disability get licensed by age 21.

Autism can affect decision-making, information processing, and attention to varying degrees, as well as social cognition, communication, motor coordination, and the ability to control emotions.

Many of these capabilities come into play with young autistic drivers. Some, such as getting lost in the details of the road or having difficulty recognizing cues of other drivers, may raise the risk for unsafe driving behaviors. Others, such as a vigilance to follow the rules of the road, may promote safer driving behaviors.

One study suggests autistic males may have slower hazard detection times and difficulties recognizing hazards, including pedestrians, than non-autistic males. Another study conducted at CHOP found newly licensed young autistic drivers have a similar crash risk but are much less likely to have their license suspended or to receive a traffic violation than their non-autistic peers.

DETERMINING READINESS TO DRIVE

Though states set an age when a person may obtain a driver’s license, there is no magic age when one is “ready” to drive. It is important to make a decision that is right for you and your family. CHOP experts recommend families follow these steps to determine readiness to drive:

  • Schedule an appointment with your primary care provider to address any concerns, such as communication or cognition issues
  • Consider seeking the advice of a driving rehabilitation specialist or occupational therapist who has training in working with individuals with neurodevelopmental differences
  • Add goals about driving to your child’s individualized education plan (IEP) and follow up with school personnel

ADDITIONAL RESOURCES FROM CHOP

Center for Injury Research and Prevention at CHOP: Learn about autism and driving research and resources from this Center of Emphasis at the CHOP Research Institute.

CHOP Research on Neurodevelopmental Differences and Driving

Young Autistic Drivers Crash Less Than Their Non-Autistic Peers

Teaching Autistic Adolescents to Drive

Newly Licensed Autistic Drivers Crash Less Than Other Young Drivers

Many Voices Needed in Autism and Driving Research

Can Autistic Teens Drive?

TeenDrivingPlan Practice Guide: This online resource offers practice driving lessons from CHOP experts, including 54 short videos and tips to create the right learning environment.

Center for Autism Research at CHOP: Beyond this Roadmap, access helpful information and guidance as your child transitions to adulthood from CHOP experts.

OTHER ADDITIONAL RESOURCES

The Center for Autism Research and The Children's Hospital of Philadelphia do not endorse or recommend any specific person or organization or form of treatment . The information included within the CAR Autism Roadmap & trade; and CAR Resource Directory & trade; should not be considered medical advice and should serve only as a guide to resources publicly and privately available . Choosing a treatment, course of action, and/or a resource is a personal decision, which should take into account each individual's and family's particular circumstances .