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The Relief of Diagnosis: Autism Spectrum Diagnosis in Adults

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At a recent forum for professionals who provide services to special needs populations, my friend, Jack approached a representative from our regional single portal entity. He asked what the process would be for an adult male, in his early 40s, who’d recently been diagnosed with Autism Spectrum Disorder, if that person were to apply for services.

“Well, that would never happen,” the representative said. “Autism is always diagnosed in childhood.”
“Just say that it did …” my friend tried again, “just hypothetically.”
The man shrugged. “It wouldn’t.”
“But, “ Jack stammered. “But …” His face got red and hot, his palms rubbing against the denim of his jeans. “But …” He didn’t hear what else was said, as he fled the room, unable to say what he was thinking: “But I’m autistic. And I just got diagnosed a month ago.”
My friend Jack is, in this case, a fictive amalgamation of many adults I’ve known to be diagnosed in their adult years; but the regional agency’s words are true. The startling ignorance of this regional agency’s representative is, sadly, no surprise to many of us who work with adults on the autism spectrum. While media often portrays children being diagnosed with ASD at younger and younger ages, the general public rarely hears of the surge in newly diagnosed adults.

Yet demand for adult diagnostic evaluations is skyrocketing. One estimate suggests that one in five people with autism is aged 60 or more.1 It’s perfectly reasonable to suggest that many autistic people never came to the attention of diagnostic professionals during their school years; or, if they did, they did so prior to the recognition of Asperger’s Syndrome, or the understanding that autism can co-exist with verbal ability. The percentage of adults with ASD appears to be consistent to that of children with ASD, upholding the understanding that ASD is a lifelong learning style. “Adults with ASD appear to be largely unrecognized,” states an epidemiological survey of ASD adults in the UK.2 The authors add, sadly, “To our knowledge, there are no previous systematic community surveys of adults with which to compare these findings.”

As awareness of the characteristics of autism spectrum disorder has increased throughout the popular culture, more adults are becoming aware that the characteristics of autism may well explain significant life-long experiences. These adults had been baffled when their strong educational performance didn’t result in successful, long-term employment. Difficulties maintaining close friendships, painful accusations of selfishness or emotional coldness that don’t necessarily reflect the person’s internal feelings of emotional connection may make a different kind of sense when seen through the lens of ASD. “No wonder I do this,” many adults find themselves saying.3

Scottish singer Susan Boyle described her recent diagnosis of Asperger’s Disorder as “a relief”. This is consistent both with adults I’ve encountered in my years working at the TEACCH Autism Program, and by qualitative research studies. One mother I spoke with said that if her son had been diagnosed when he was five years old, she might have been devastated, but his diagnosis at the age of 25 came as a relief. By that time, the diagnosis explained a great deal of her son’s learning style, characteristics that she’d always assumed were just his personality, or quirks. She’d had trouble understanding or explaining how he could be so intelligent, and yet have such difficulty navigating the world. “Part of (the diagnosis) was the hope it gave us that there could be ways to make his life less stressful and, hope of hope, he would find satisfaction and JOY. And now all these years later, he has.”

Relief has been used by many adults with ASD to describe their feelings upon confirming their diagnosis; yet, this feeling is only one part of the journey. Many times, learning about autism for the first time in adult years means a whole new way of thinking about one’s life and having to defend the diagnosis before you really understand what it means. The current conceptualization of Autism Spectrum Disorder is sufficiently vague that it can be easily misconstrued to mean anyone who may feel different from others, left out, shy, or awkward. When people say, “We’re all a little autistic,” what they mean is “We’re all a little human.”

Cynthia Kim’s e-book, So You Think You Might Be Autistic, is one of the best resources for adults that I’ve found. I first read Kim’s writing on her blog, Musings of an Aspie, and her book is largely compiled from writings accessible on this website. Kim’s own personal journey is here, as she learns about ASD and weighs whether or not to seek professional confirmation of her own diagnosis; and it is a guidebook for others, complete with numerous links to online resources. Her writing is clinical—overly clinical, at times, for me, referring as she does to the many “symptoms” of ASD— but compassionate. Each chapter leads with a clear title explaining the information that will be found there, and closes with recommendations for the reader.

Recommendations:

Learn more about ASD before seeking professional diagnosis: Diagnostic evaluations are usually expensive and time-consuming. If you are already working with a counselor or mental health professional, ask this person how much they know about adults on the autism spectrum, and whether they think you might be autistic. You might refer to diagnostic checklists for adults, such as Simon Baron-Cohen’s Autism Quotient, Samantha Craft’s “Females with Asperger’s Syndrome (Non-official) Checklist.” Roger Meyer, an adult with Asperger’s, has adapted Tony Attwood’s Australian Scale for Asperger’s Syndrome for adults,4 The Aspie Quiz, developed by Swedish researcher Leif Ekblad, is a popular online screening questionnaire.5 Cynthia Kim’s So You Think You Might Be Autistic includes a great checklist as well. Additional free diagnostic checklists can be found at the Autism Research Centre (Cambridge).6

Remember that these checklists are not a substitute for a formal evaluation, or even intended to be conclusive information in the process of self-diagnosis. They are compilations of characteristics drawn from a group of people who have already been diagnosed, and are often used as screening tools or preliminary guidelines to developing a shared idea of what people mean by the diagnosis. No one with ASD will meet all characteristics on these checklists and those without ASD will still meet some of these characteristics. Nothing about autism is unique to autism, and the characteristics of ASD are, after all, part of the human spectrum.

Consider the reasons you are seeking diagnosis: A formal diagnosis may be required to receive support services from existing agencies, such as the Department of Vocational Rehabilitation or other support clinics and agencies. If you do not perceive yourself to be in need of these supports, a formal evaluation may not be necessary. Many autism support groups recognize self-diagnosis as a legitimate option, and will accept you based on your own thoughtful evaluation. However, many people find it helpful to have professional confirmation of their self-reflection. If you are in search of better self-understanding, the formal diagnostic evaluation is but one step in this long process.

Seek out other adults with ASD: The autism community can be a good source of information for learning more about ASD. They may be able to provide information regarding services available to adults with diagnosed ASD, or their experiences with disclosure, self-advocacy, or their own diagnostic journey. In particular, organizations such as the Autism Self-Advocacy Network (ASAN) or The Global & Regional Asperger’s Syndrome Partnership (GRASP) may offer social and support opportunities. Groups may publicize their meetings through popular online forums such as meetup.com or Facebook. Online forums, such as wrongplanet.net, are also popular venues for adults with ASD and those considering the diagnosis, particularly those who aren’t quite ready to be public about their journey.

 

Carolyn Ogburn is a writer, musician, and an autism professional at TEACHH. She is also the co-creator (with Catherine Faherty) of TAG-Asheville, which is devoted to creating a broader definition of normal.


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