So You Think You May Have Autism…

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So you think you may have autism?

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 thinking you have autism 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 adults with ASD (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 have ASD, there are listservs and web sites that were developed and managed by individuals with ASD, some of which are included in the Additional Resources links below. There are also a number of blogs, articles, and books written by individuals who are diagnosed with ASD. 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 a woman with ASD, 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 been diagnosed with ASD if they were around today, and other contemporary success stories of people who have been diagnosed with ASD. 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 with ASD will have this level of notoriety or success, if you find that you do have ASD, make the most of this knowledge and know that you are in good company.

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Last Updated: March 16, 2014

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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