Adults with Aspergers – Getting a late Diagnosis

More and more adults are being diagnosed with autism spectrum disorder (ASD) in their thirties, forties and beyond. Not surprisingly, one of the most common ways that adults realize they are on the spectrum is in the wake of having a child diagnosed with ASD.

Some parents start out researching autism as an explanation for their child’s struggles and realize that an ASD diagnosis would explain a lot about their own life, too. The first clue for others is when a professional who works with their child mentions that autism can run in families. Regardless of how it happens, there is often a sense of disbelief at that initial Aha! moment.

I remember the exact moment I first thought I might have Asperger’s Syndrome. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. Finch described an online quiz that his wife asked him to take because she recognized so many Aspie traits in him.

As he and his wife described the quiz questions, for the first time I realized that Asperger’s Syndrome (AS) is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. I found myself nodding along with the program, shocked at how much I had in common with Finch, and yet not quite believing I could have gone four decades without realizing something so critical about myself.

The first thing I did was search for a screening quiz like the one described in the radio program. I took the AQ and the Aspie Quiz, certain that one of them would prove me wrong, even as I repeatedly scored in the high range for AS traits on each.

I sat there at my desk for long minutes. Could it be possible that I’ve been autistic all my life and not known it? I’ve always known that I’m different. I’ve been labeled shy, weird, introverted, geeky. But what if I wasn’t just weird? What if this thing called Asperger’s Syndrome explained everything about me that was different?

That was an exciting thought. If it was true, it gave me a whole new way of thinking about my life. But the excitement soon wore off and I was faced with what to do with this realization. It turns out there aren’t many resources for adults with ASD, especially those who aren’t formally diagnosed.

Is a Diagnosis Necessary?

A diagnosis opens the door to services at school and home for children, but what about for adults? If you’ve made it into mid-life without a diagnosis, you may find yourself wondering if getting diagnosed really matters. I went back and forth for months on the question of whether to seek a professional diagnosis. Eventually I decided to pursue a diagnosis, primarily for peace of mind. I needed to know that I wasn’t imagining everything.

There are many reasons you may choose to pursue a diagnosis as an adult: to access services, to request accommodations at work or school, or to increase the likelihood that therapy or counseling takes your ASD traits into account. Whatever your reason, it’s important to be aware that the diagnostic process is more challenging for adults than for children.

Many adults run into difficulties with access. There are still few professionals qualified to diagnose adults. The process is often expensive and not covered by health insurance. Misdiagnosis is common. And some adults choose not to seek a formal diagnosis out of concern that it may lead to stigma or bias, or create practical limitations like not being able to join the military or having parental rights questioned.

The Self-discovery Process

Obviously, this is a decision that you’ll want to give a lot of thought. As you do, it can be helpful to spend time on self-discovery, testing out your suspicion that you’re on the spectrum through research and introspection.

Self-discovery can include:

• Learning more about ASD in adults: If you have a child with ASD, you’re familiar with ASD traits. While the diagnostic criteria are the same for all ages, autism looks different in adults than it does in children. As we age, we develop a range of coping mechanisms that can mask typical symptoms, making them harder to identify. There can also be gender-related differences. Good sources of information about adult ASD include books like Tony Attwood’s “The Complete Guide to Asperger’s Syndrome” and blogs by autistic adults.
• Assessing ASD traits in yourself: Based on your reading and research, make a list of traits you see in yourself. Talk with one or more trusted persons in your life about your self-assessment. Share a list of ASD traits (female ASD traits) with them. Do they see the same traits that you perceive? Do they see traits you haven’t considered?
• Looking back at childhood: If you have access to childhood records (baby book, report cards, etc.) or home movies, it can be helpful to look for typical early signs of ASD. If possible, you can also ask your parents or caregivers about specific behaviors. Often, an adult diagnosis will involve answering questions about your childhood, so any information you can gather before an assessment will be helpful.

By the time you’ve completed your research, you should have a good idea of whether ASD is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need–or have a specific reason–to seek out a professional diagnosis.

Seeking an Adult ASD Assessment

If you decide to pursue a professional diagnosis, it’s important to find a psychologist, psychiatrist or neuropsychologist experienced in diagnosing adults with ASD. If your child has received a diagnosis, his or her clinician may be able to refer you to someone who does adult assessments. Other options for finding providers who do adult evaluations include: online resources like the Pathfinders for Autism website; recommendations from other autistic adults; parents of autistic children; teaching/research university hospitals; and local nonprofit autism service organizations.

Whatever path you take to find someone who can evaluate you- know that it won’t likely be a direct route. It’s okay to feel like the biggest first step you can manage right now is to make a list of providers to contact. It may take weeks or months to start making those calls and yet more months to commit to meeting with a professional or scheduling an evaluation, especially if you are simultaneously dealing with the demands of being your autistic child’s advocate.

Ultimately, most adults find that an autism diagnosis is a positive thing. It provides an explanation for why we’ve always felt different and is the first step in assembling a toolbox filled with new coping skills and adaptations.

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Cynthia Kim is the author of  I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults. She blogs about her experiences as an adult with late-diagnosed ASD at Musings of an Aspie.