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Adult ASD: Seeking a Professional Diagnosis

Part 6 in the I Think I Might Be Autistic Series

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There are a number of reasons that an adult might want to seek out a diagnosis by a professional:

  1. To become eligible for services
  2. To obtain supports or accommodations at work or school
  3. To increase the likelihood that therapy or counseling takes aspie/ASD traits into account
  4. For peace of mind and/or validation of a self-diagnosis

Primarily, I fell into the last category. I needed to know that it wasn’t “all in my head” and getting a diagnosis by a professional seemed like the most conclusive way to do that. However, if I ever go to graduate school (or–gasp–get a job), I like the idea of having an official diagnosis to back up any requests for supports that I might choose to make.

So, how do you go about getting evaluated for Asperger’s or autism as an adult? First, be prepared to face some significant challenges:

  • You’ll need to find a psychologist, psychiatrist or neuropsychologist who does adult ASD evaluations. Depending on where you live, this task ranges from difficult to nearly impossible.
  • You’ll probably have to pay for the evaluation yourself. Most insurance companies in the US don’t cover adult ASD evaluation. Be forewarned, a full evaluation can cost anywhere from $1500 to $3000. I’ll talk about other, potentially less costly options below.
  • The process of getting diagnosed may take months or years and you may encounter misdiagnoses and misinformation along the way.

With all of the discouraging stuff out of the way, let’s look at some of the options for getting diagnosed:

Finding a Provider

A good place to start if you’re in the US is the Pathfinders for Autism Providers Directory. Plug in your zip code, how far you’re willing to travel (further will give you more options–I chose 50 miles when I did my search) and select the “Getting Diagnosed” option in the Categories list on the right.

You’ll be given a (hopefully) long list of results to comb through, including psychologists, psychiatrists, neuropsychologists and licensed clinical social workers. I know of people who have been diagnosed with ASD by all of these types of professionals except the last. Read the provider descriptions, visit their websites and/or call providers to narrow down your results to those who do adult evaluations.

Some other options for finding providers who do adult evaluations:

  • Word of mouth: If you can locate autistic individuals or parents of autistic children in your area, ask them for referrals.
  • State, provincial or local autism group: Google “[your state/county/province/major city] autism services” and look for .org website addresses in the results. You should find at least one local nonprofit or community autism services organization in your area. Call and request a referral for an adult evaluation. If you find more than one, call all of them. Different organizations have different missions and their resource lists vary. You can also find a good but not exhaustive list of state-by-state resources on the GRASP website.
  • Local university: Call the medical school or teaching hospital for a large public university in your area and speak with someone in the neurology department. You may get transferred around a lot and have to explain your question repeatedly but this can be a way to find an adult specialist if you’re coming up empty in other places.

The Role of Your Primary Care Physician

Surprisingly, one source that probably won’t be helpful is your primary care physician. I explained my concerns to my doctor and his reply was to offer to write me a prescription for a beta blocker for anxiety. When I turned that down, he suggested counseling.

What he didn’t suggest was that I get evaluated for ASD. His approach was focused on treating the symptoms; he seemed to think the source of the symptoms was irrelevant. That’s not to say he’s a bad doctor. He probably wasn’t trained to handle this type of question. Autism is still seen by many as a childhood disease.

If you live outside the United States or if your insurance covers ASD evaluation, a referral from a primary care doctor might be required to qualify for insurance coverage (or rebates or whatever form subsidized health care takes in your country). In this situation, you may need to approach your doctor armed with information about adult autism/Asperger’s.

This is where your discovery process and perhaps self-diagnosis will come in handy. While there is increasing awareness of the existence of undiagnosed adults, many primary care doctors aren’t well-informed about the subject. You may find that you’re more knowledgeable than your doctor. Don’t be afraid to advocate hard for a referral.

Lower Cost Alternatives to a Private Provider

If the cost of a full evaluation is prohibitive, there are other options to consider:

  1. Ask your community autism services organization if they have a staff or consulting psychologist who can do an evaluation. Depending on your financial situation, they may offer this service at reduced cost or as part of their services to the community.
  2. Some universities with teaching hospitals or clinical centers offer ASD evaluation conducted by supervised graduate students on an ability-to-pay basis.
  3. You may be able to obtain a diagnosis as part of ongoing therapy with a psychologist or psychiatrist. Sometimes a therapist will raise the possibility of ASD or be willing to commit to a diagnosis on the basis of information you share during therapy sessions.

(If you obtained your diagnosis in a way that I haven’t mentioned, please let me know in the comments and I’ll update this section with additional options. I apologize for the lack of information about getting diagnosed outside the US. Hopefully commenters can help out there as well.)

Making the Appointment

After doing extensive research, including everything listed above plus some fruitless things not included here, I came up with exactly two possibilities within a 50-mile radius of my major metropolitan city.

Armed with my very short list, I called the first provider on it–a psychiatrist whose name I’d obtained from a major university. This didn’t go as well as I’d hoped. The doctor was extremely condescending and basically said, “Adult evaluation is really expensive and I doubt you can afford it and why do you want it anyway?”

I gave a brief stuttering answer, hung up the phone shaking, and spent two weeks working up the courage to call the second and only other name on the list.

The second option was a private neuropsychology practice specializing in cognitive testing for children and adults. To my great relief, the person who answered the phone didn’t find it strange that I was calling to schedule an evaluation for myself without any sort of referral. She didn’t treat me like an idiot or become impatient with my questions.

I gathered the information about the testing process and said I’d call back after thinking about it. The evaluation was going to be a big investment and taking that final step was intimidating. Bizarrely, my biggest fear was that the tests would prove I didn’t have Asperger’s or that the psychologist would think I wasn’t autistic enough to merit a diagnosis. Then I’d be back to having no explanation for all these atypical things about me.

After a couple of days of thinking it over, I decided that I definitely wanted to go forward. My husband was supportive of my decision and offered to come with me to the appointment if I wanted him to. I didn’t take him up on the offer, but it felt good to know that he was 100% behind me.

Going At Your Own Pace

Whatever path you take to finding someone who can evaluate you, know that it won’t likely be a direct route. It’s perfectly okay to feel like the biggest first step you can manage is to bring up a list of results on the Pathfinders website. Maybe your next step is reading about the providers and a few days later you might gather the energy to start making a list of providers to call. 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.

Take your time. Ask for support from a trusted person in your life if you feel comfortable doing so. Getting diagnosed can be an uphill climb. Pace yourself.

Finding a Professional who Works with Adults

  • Be prepared to do a lot of research.
  • Look for psychologists, psychiatrists or neuropsychologists who are experienced in diagnosing adults with ASD.
  • If you have to get a referral from a primary care doctor, be prepared to advocate for yourself.
  • If the cost of diagnosis is prohibitive, look for alternatives to private providers.
  • Be patient and go forward at your own pace.

Next in the series: Preparing for your ASD Evaluation

I Think I Might Be Autistic (Part 2)

Paths to Realization

As an adult, there are a few common ways that you might realize you’re on the spectrum:

  • your child is diagnosed with ASD and in the process of learning more about autism, you recognize autistic traits in yourself
  • someone in your life reads or hears about Asperger’s or autism and tells you that they see a lot of ASD traits in you
  • you hear or read about Asperger’s or autism in the media and recognize yourself in the description of ASD traits
  • you take one of the online ASD tests and get a result that says you are “likely an aspie” or “likely autistic”

Your reaction to this first contact with Asperger’s or autism might be “I kind of knew that” or it might be “bullshit!”

For many years, I dismissed my AQ scores. I was convinced that everyone who took the test got a score that said they were likely autistic. Wouldn’t everyone answer the way I did if they were being honest? Completely irrational, yes, but I wasn’t ready to accept what was staring me in the face.

Then came the Finch story on NPR. When it was over, I Googled “Asperger’s tests” and came upon the Aspie Quiz. My score was way above the cutoff for Asperger’s. I took it again, answering more conservatively. Still above the cutoff.

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? That’s a stunning realization–one that would require me to reframe everything I thought I knew about myself and everything I’d assumed I knew about autism.

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 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.

Embracing Your Realization

  • Relax. Breathe.
  • Take some time to think about what being on the spectrum might mean to you.
  • Retake the AQ or Aspie Quiz as many times as you need to.
  • Make a list of traits that you see in yourself, including specific examples if you find it helpful.
  • Reassure yourself that you aren’t making this up.

Is This Me?

I didn’t do anything with my realization right away. It was a lot to process. I kept coming back to the possibility that I was imagining it.

Late the next day, during a long drive home with The Scientist, I brought up my suspicion that I might be an aspie. His reaction was guarded. He listened, agreed with much of what I said, then reassured me that he loves me exactly the way I am. It was a good discussion, but he didn’t sound convinced. I needed more data to back up my hypothesis.

Back at home that night, I showed him some things online, including Rudy Simone’s list of Female Asperger Syndrome Traits. He read through the list, nodding at many of the traits, just as I had, looking a little more convinced of my hypothesis with each “hit.”

In the days that followed, I searched the internet for more information about Asperger’s and found frustratingly little that applied to adults. I felt like I needed a more comprehensive resource, something that would give me a better picture of Asperger’s than the sometimes conflicting bits and pieces I was collecting online. (Sadly I hadn’t yet discovered autistic bloggers.)

Determined to find information about Asperger’s in adults, I scoured the reviews at Amazon.com and settled on  The Complete Guide to Asperger’s Syndrome. Having now read a good portion of the books available on ASD, this is the still one book I’d recommend if you’re looking for an accessible, reasonably comprehensive starting place.

Diving into the book immediately after it arrived on my doorstep, I spent hours underlining and annotating it. I read passages aloud to The Scientist. I made notes and looked up things like executive function and special interests online. Most of all, I just kept saying to myself, “This is me. I’m an aspie.”

Somehow, it had taken me 42 years to recognize it.

Gathering Information to Support your Realization

  • Research Asperger’s Syndrome and autism.
  • Read about how autistic traits appear in adults.
  • Read about the differences between AS in men and women.
  • Read personal narratives written by aspies and autistic individuals (scroll down the linked page for a list of ASD bloggers)
  • When you feel ready, find a trusted person in your life who can give you an objective assessment of which traits they see in you.

Coming next: ASD as a Sensemaking Narrative