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

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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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Last Updated: June 9, 2020

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™ and CAR Resource Directory™ 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.


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