Why (and how to) pursue an adult autism diagnosis

Choosing to undergo assessment for autism as a 38-year-old was harder emotionally than I thought it would be. Ultimately, however, the self-knowledge my diagnosis provides gives me personal strength.

SILVER SPRING, Md., June 20, 2012 — I have Asperger’s syndrome. After years of hearing that parents were often diagnosed on the autism spectrum after their children were and reading accounts of autism that applied to me as much as they did to my autistic son, I finally chose to pursue and get an Asperger’s diagnosis for myself this year.

As an adult who does not require services and who is pretty effectively indistinguishable from typical adults, some might wonder why I felt the need to get an official diagnosis. After all, such a thing requires a substantial investment of time, money and mental energy. Why bother?

The answer is much more complicated than the question and is probably different for every adult who contemplates such a thing. Many adults choose self-diagnosis of Asperger’s at least partly because it can be so hard to find a qualified professional willing to do adult assessments or because they do not have the funds to pay for the several-hour appointments required.

For some, their status as an Aspie is so obvious to them that they do not feel a need for someone else to confirm it.

It was different for me. For as much time as I had spent thinking I was probably on the spectrum, I had spent a similar amount of time thinking of reasons why I couldn’t be. I didn’t need services. I didn’t feel disabled. I could function socially and didn’t fit any stereotypical ideas of what an Aspie would look like.

Yet I have sensory issues that significantly impact my quality of life. I have spent years both unconsciously and sometimes very purposefully watching other people to see how they act so that I would know how to behave in similar situations. I have difficulty in social situations, although I’ve learned to fake it very well. There are crucial life tasks that are very difficult for me to accomplish, but that my husband has been able to step in to do.

Although I felt that I probably fit the description of an Aspie, I didn’t feel right assigning it to myself. Furthermore, if I had chosen to do that instead of hiring a professional, I knew that I would second-guess my self-diagnosis frequently. With a professional diagnosis, all of that energy that I had put into wondering if I was autistic or not, I could now put into other things.

Those other things include self-knowledge that I hope will help me find comfort in who I am and the limitations that my neurology places on me. Much as a self-diagnosed sensory processing disorder diagnosis (so obvious to me) years earlier put me more at ease in accepting my aversions to sensory stimuli, I hope that my Asperger’s diagnosis will let me see the world and my behavior through a new, more forgiving lens.

For me, for years, my interior life has not matched my exterior life. I don’t expect that to change. The diagnosis doesn’t make me a different person, but it allows me to recognize truths about myself. To understand that it is okay to say no to an invitation because I just can’t handle it. To accept that I will need to come home from an event and just sit on the couch to process for a while. To recognize that I will have to mentally prepare with self-talk prior to outings that I know will be stressful. To know that when I make an embarrassing social gaffe, that maybe there is a reason behind it.

My Asperger’s diagnosis gives me a name for what I’ve always known I was, starting in elementary school when my mantra was, “Nobody understands me,” up to today when the tagline to my personal blog is, “Get your quirk on.” It gives me a connection to my autistic son and it gives me self-knowledge that I find precious.

I am grateful to have my diagnosis, but it wasn’t easy to get there. The first hurdle I had to cross was my own willingness to open up about my need for a diagnosis. I reached out to the Autism Women’s Network, but there are other organizations and networks that could offer support, including the Autistic Self Advocacy Network or Wrong Planet.net. They might be able to suggest someone who does adult diagnosis or, as in my case, they might just give you the encouragement you need to do so.

Finding a qualified psychologist to do the assessment can be a challenge, especially if you do not live in a large urban center. It is important to find someone with whom you feel comfortable and also someone who understands the difference in presentation between adult diagnosis and childhood diagnosis. If you are a woman, there are additional differences in the way autism and Asperger’s presents in women.

I started contacting organizations that did child assessments to find out if they did adult assessments as well. Many did not. Some do adult assessments, but only through college age. Most will have suggestions for someplace else to try, however, and eventually it is likely that you will find someone. Ultimately I found two places: one was an organization that does assessments and provides other services for individuals on the spectrum and one was an individual psychologist whom I found by asking one of my son’s providers if she knew someone.

Another thing you should know is that, much as a child’s evaluation and assessment costs hundreds of dollars, so does adult assessment. It is probably worthwhile to look for researchers or others who might charge less, but it is likely you will have to pay a substantial amount for your diagnosis and it is also likely that your insurance will not cover it.

The assessment itself consisted of two long sessions of interviews and testing. I also provided some written material to explain some of the reasons I thought I might have Asperger’s, as it is infinitely easier for me to fully express what I want to say in writing rather than in person. The psychologist also asked many questions about my childhood and my development, most of which I had to ask my mother about. 

I should note that all of this is based on my own experience in getting a diagnosis. There are undoubtedly many ways to do it and infinite reasons why you might want or not want a diagnosis. I can only speak to my own. I wrote more extensively on my personal blog about why I chose to pursue diagnosis in a post called “Aspie Like Me: A Diagnosis Story.”

Regardless of how or when or whether a self or professional diagnosis, choosing to discover something about yourself is, in my opinion, nearly always a good thing. Knowledge is power. It is also worthwhile to put thought into whether to publicly disclose your status on the spectrum.

I know that in my case, I am grateful to have had the time, resources and funds to discover a little bit more about how my brain is wired. I am grateful to be surrounded by supportive people who have embraced me when I told them about my diagnosis. I am glad that I can be an example of a proud Aspie adult for my autistic son. I look forward to finding out where this self-knowledge takes me in the future and wonder what twists it will bring to the path of my personal journey.

Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean’s work at Autism Unexpected in the Communities at the Washington Times. Please credit Jean Winegardner and the “Communities at WashingtonTimes.com” when linking to this story.


This article is the copyrighted property of the writer and Communities @ WashingtonTimes.com. Written permission must be obtained before reprint in online or print media. REPRINTING TWTC CONTENT WITHOUT PERMISSION AND/OR PAYMENT IS THEFT AND PUNISHABLE BY LAW.

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Jean Winegardner

When Jean had her first child in 2001, "autism" was about the scariest word she could think of. Six years later when her second child was diagnosed with PDD-NOS, a form of autism, she was just happy to have a word to help him get the services he needed. Her autism journey has been full of tears, laughter, love and at least one attorney.

Jean blogs about her life with her autistic son, Jack, on her blog, Stimeyland. Her two neurotypical children, Sam and Quinn (one older, one younger than Jack), make frequent appearances there as well. Also at Stimeyland? Jean's quirky sense of humor.

She also runs AutMont, an events calendar listing autism-related events in Montgomery County, Maryland.

Raising a child with special needs is hard for so many reasons, but after living with Jack, Jean wouldn't trade him for anything in the world. Come along with Jean as she experiences the joys that come with parenting a special kid.

You can email Jean anytime at stimeyland at gmail dot com or follow her on Twitter, where, as "Stimey," she offers her world view in snippets of 140 characters or less.

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