Tag Archives: adult diagnosis

Taking the Stroop Test

I took the Stroop test as part of my ASD evaluation and I’ve seen it recently on a list of online autism evaluation tests. While not strictly an autism test, it is often part of the test battery that is given at neuropsychological evaluations for autism.

The format of the Stroop test that I took during my evaluation was:

  • verbally reading a list of color words (blue, red, green) printed in black ink
  • verbally stating the color of a series of Xs printed in blue, red or green ink
  • verbally reading a list of color words that were printed in colored ink (i.e. RED printed in blue ink or RED printed in red ink)

The Stroop test is a test of executive function. Our brain’s natural tendency is to read words that we’re presented with; noticing the color of the ink the word is printed in is a secondary priority. The Stroop test asks us to inhibit our first instinct (reading the word) in favor of stating the color of the ink. Doing so draws heavily upon the executive functions of inhibition and attention.

Because autistic people typically have impaired executive function, we often score below average on the Stroop test. The time taken to complete the test is also seen as a measure of cognitive processing speed, another area where autistic individuals will typically have a below average result.

There are quite a few other conditions that also cause cognitive “interference” on this test, resulting in below average scores, including ADHD, dementia, brain damage, depression, schizophrenia and addiction. While the results of the Stroop test can give you some insight into your executive function abilities, it’s not strictly related to being or not being autistic.

Taking the Test

You can take a mini version of the Stroop test here.  The test site is ugly and has lots of ads that you’ll have to ignore. Read the instructions in the center of the page and click the green button when you’re ready to begin. The test has 20 items and will take a couple of minutes to complete. You’ll receive your scores on the final screen of the test.

Scoring the Test

The reason I called this a mini version of the Stroop test is because it has only 20 trials. The version of the test I took at my evaluation had 300 trials across the 3 different types of tasks, with each set of 100 having a 45-second time limit.

The online version presents 15 incongruent (ink color and word do not match) and 5 congruent (ink color and word match) trials. It then gives you a score showing your congruent and incongruent results, with number correct and the average processing time for each. Generally, most people respond more quickly the congruent pairs than the incongruent pairs.

Here are my scores for the online version:

  • Congruent: 5 Correct, avg response time: 11.78 seconds
  • Incongruent: 15 Correct, avg response time: 10.20 seconds

(Admittedly I have an advantage because I was familiar with the test format and I think my scores reflect that.)

And here are my scores for the paper version (raw score, followed by percentile – in both cases higher is better):

  • Word (color words/black ink): 82, 12th percentile
  • Color (Xs/3 ink colors): 91, 27th percentile
  • Color-Word (color words/3 ink colors): 110, 75th percentile
  • Interference (calculated from other scores): 121, 92nd percentile

If you look at both sets of scores, you’ll see that I’m better at the incongruent tasks. I got higher scores on the Color-Word and Interference scores for the paper test and had a faster average response time for the incongruent pairs on the online test.

When I saw my scores from the paper test, I was shocked by how poorly I did on the first two tasks, which felt effortless when I was taking them. I have no explanation for the disparity in my performance, except that maybe when a task is more difficult, I pay closer attention and therefore do well on it. I had a similar outcome on another “easy version-hard version” test during my evaluation which supports this supposition but there may be another explanation that has gotten by me.

The Bottom Line

How useful is the online Stroop test? I think it’s more valuable as a curiosity satisfier than an actual measure of cognitive processing. First, it doesn’t have the “priming” tasks of reading the words in black ink and naming the colors of the Xs, which create performance patterns in the brain, supposedly making the color-word task more difficult.

Second, there is no overall time limit so the test taker doesn’t feel pressured to rush through as many items as possible to complete the test in the allotted time. The response time score compensates for this a bit, but there’s no mention at the beginning of the test that one is being timed.

Finally, the number of items is too few to cause the cognitive fatigue that makes the paper test challenging.

Social Interaction Survey

This week’s questions are all about general social interaction (next week is social communication). Some of these questions might hit a little close to home for some of us  because they touch on trust and vulnerability. Please don’t feel pressured to answer any questions that make you uncomfortable.

If you prefer to answer anonymously, you can do so at Survey Monkey.

1. Have you dated knowing you had Aspergers/Autism? If so, when and how did you disclose? How did that turn out?  How did you go about getting someone to date you?

2. How often do you like to go out? Do you prefer to do stuff alone? Do you find it difficult to motivate yourself to go out sometimes?

3. Do you talk a lot to people? A lot of books go on about how Aspies can talk the hind leg off a donkey about their pet topics  but I don’t have the desire to really talk to people.

4. For people diagnosed as an adult, do you have a changed perception of how others see you? for example how friendly/outgoing/confident you seem to them.

5. Do you see yourself as vulnerable because of ASD? Are you more likely to be persuaded to do something or taken advantage of than most other people might? Has your perception of this changed with age?

6. Trusting other people – over the years I have learnt that I am very poor at reading peoples intentions and have been taken advantage of. I have adjusted to this by needing to understand what is happening and needing to be able to logically join up what someone does and says into a consistent picture – or I don’t trust them. How do other people manage this?

7. Do you ever feel like you’re living on a different scale of time from other people? For example, do you hear about a new TV show and only watch it years later because it just didn’t seem urgent?

8. My therapist explained that extroverts gain energy from others and introverts gain energy from being alone, and that autistic people can be either or anywhere in between. She also said there are challenges for extrovert autistics because of the social difficulties making it hard to achieve needed social interaction. (more details) Thinking about it in these terms, where would you place yourself on a continuum from introvert to extrovert? Is this different from how you would think of yourself using the terms in a broader sense, and is this different from how others see you?


Comorbid Conditions: Diagnosis and Misdiagnosis in Autistic Women

There’s a new article today at Autism Women’s Network: Autistic Women: Misdiagnosis and the Importance of Getting it Right

The rate of being diagnosed with a co-occuring condition if you’re autistic is very high. In fact, I’m curious if there’s anyone here whose sole diagnosis is autism or Asperger’s. I have a comorbid diagnosis of an anxiety disorder and probably have mild undiagnosed OCD. The really interesting thing is that so many of us don’t feel that all of our comorbid diagnoses are a good fit. I wrote about how my anxiety doesn’t feel disordered to me and so I don’t think the diagnosis fits.

I also think it’s interesting that we’re often given diagnoses for conditions that have many overlapping traits with autism. For example, dyspraxia and sensory processing disorder share nearly all of their traits in common with autism. How do clinicians decide that one autistic person should also get a dyspraxia or SPD diagnosis while another person with a very similar profile doesn’t? I would love to hear your thoughts on this or anything related to the article in the comments here.

Also, I owe a huge thank you to the people who filled out the survey about comorbid conditions and patiently worked with me on sharing their stories for this article.  My next article for AWN will be about motherhood and the challenges that being on the spectrum can present as well as how it might affect our choices regarding childbearing. Okay, so that’s likely more than one article.

If you’d like to share your thoughts and experiences, I’ve created a short 5-question survey at  Questions about Autistic Motherhood. It’s open to both women with children and women who do not have children. As long as you identify as being on the spectrum and would use the term mother to refer to yourself if you had a child, then you’re welcome to take the survey. I’m especially interested in the question about what supports autistic moms would benefit from–if there are enough responses, that will be its own article, because I think its a subject that doesn’t get nearly enough attention.

Diagnosis Barriers for Autistic Women and Girls

I’m very excited to announce that I’ve been invited to contribute monthly articles to the Autism Women’s Network. My first piece, Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls, was posted today.

Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!

I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.

I guess that’s it for today. Shortest post ever . . .

Monday Morning Musings (6/3)

Yale Autism Seminar Video Series

I’ve been watching the Yale Autism Seminar video series (available free from iTunesU). It’s advertised as the only autism-specific college course and is basically a chance for you to sit in on the lecture portion of the course as it was given at Yale a couple of years ago. The videos cover a wide range of topics, with a strong focus on childhood autism. Each video is a 60-90 minute lecture on a single topic. A few of the lecturers include videos or other visual media to illustrate key points, but generally think “text-heavy Powerpoint presentation” for the lecture format.

Because each topic is covered by a different specialist, the quality of the lectures varies. I especially liked “Communication in Autism” by Dr. Rhea Paul. It was packed with information about how children develop language from birth through adolescence. I’ve also enjoyed Dr. Ami Klin’s presentations.

Be forewarned that there is triggery content in most episodes–not so much the factual information but the language that many of the lecturers use and sometimes their attitudes toward autistic people. I consider myself pretty resilient to triggery content but I can’t watch more than one (and sometimes only half) every few days. It’s eye-opening to see how professionals who work with autistic people view autistic people.

Not Very Neanderthal

Back in March I spit in a little tube and sent it off to 23andme to get my DNA genotyped. Last week, I finally received the results. The biggest surprise is that my body doesn’t make the lactase enzyme. I guess I’m lactose intolerant but didn’t know it? My 40s are turning out to be a banner decade for stuff like that. I also have an elevated risk for Type II diabetes. That’s good to know, because I can actually do something about it. Not so much on the elevated risk of Alzheimer’s or restless leg syndrome.

There are some fun facts among the results: I can blame my higher than average caffeine consumption on my genes and I have a significantly lower than average percentage of Neanderthal DNA (in the 8th percentile). I never put much stock in the aspie-Neanderthal theory, but I gotta admit I was curious.

I Made a Thing

I’ve been putting my Adult ASD Diagnosis series together into e-book format. This is what I have for a cover design at the moment. Yeah? No?


I’ve added about 5,000 words to what’s been posted here on the website: primarily background material about ASD and the DSM-V criteria plus a big list of questions I developed to help people identify autistic traits in themselves. My main goal in making it into an e-book is reaching a wider audience. When I first went looking for information about ASD, I went to Amazon.com and did some web searches. Neither of those was very helpful. Unfortunately, I didn’t discover the blogs of autistic adults until later.

The material that’s posted on the blog will stay, so no worries about anything disappearing. I’m also hoping that I can use the proceeds from the book to do some giveaways here. I thought about donating to an autism-related charity but then I thought “hey, I know plenty of autistic people!” and wouldn’t it be better to do a giveaway of something like a weighted blanket to an autistic person who will directly benefit from it. I have no idea how this is going to work, but that’s my dream outcome.

ETA: I accidentally fell way behind on bringing over the survey replies from Survey Monkey for the final survey ! Executive Function fail.  I’m so sorry and am in the process of getting caught up. There are about 20 additional responses that I will post this morning.

Adult ASD: Disclosure

This is part 13 of the “I Think I Might be Autistic” series.

Disclosure, it turns out, is a sticky issue. My first instinct was, “This is great! I have an explanation for my difficulties. I’ll tell everyone and they’ll be as happy about it as I am.”

Er, no. Disclosure makes people uncomfortable. Most people don’t know what to say. Many will reassure you that it makes no difference and then proceed to treat you differently. Even in the people who are very accepting, you may notice the occasional patronizing statement or doubt about your competence–little shifts in the way this person sees you now that you’re autistic.

Not that you weren’t autistic before, of course. But handing a label as loaded as autistic to another person changes things, like it or not.

Who to Share Your Diagnosis With

Some people openly disclose to everyone. Others share only with close friends and/or family. Some people disclose in stages, starting with an inner circle and working outward as they feel more comfortable.

As you think about disclosure, keep one thing in mind: it’s irrevocable. Once you share your news with someone, you can’t unshare it. You also can’t guarantee that the person you’ve shared with will keep your disclosure private. They may inadvertently or intentionally “out” you to someone you aren’t ready to share with.

Still, many of the people in our lives already know that we’re a little different. Generally, most people choose to share their diagnosis with the people closest to them. This might include immediate family, close friends and/or a significant other. If you prefer not to share beyond this inner circle of people, be sure to make it clear when disclosing that your diagnosis is private information.


Beyond your inner circle, it may become harder to decide who to share with. Obviously, you don’t need to notify casual acquaintances but what about work colleagues, supervisors, professors or others that you interact with regularly?

It may help to consider the consequences of disclosing versus not disclosing. If you’ve only recently been diagnosed then you already have a good idea of what not disclosing looks like. Are you happy with the current situation? Would disclosing allow you to ask for needed supports or accommodations? Is it possible that disclosing would create more risks than benefits?

There are real dangers to disclosure in some situations. You can open yourself to discrimination and bias, especially when it comes to work, school, or your parenting rights. I’m not writing this to frighten anyone. Just be sure you’ve done your homework and thought through the possible consequences before choosing to disclose your diagnosis. If you’re unsure, consider talking with a trusted friend or mentor before making a decision.

What to Say

There are two ways to go about disclosure. You can make a full disclosure, using the words autistic, Asperger’s syndrome or autism spectrum disorder. If you decide to go this route, be prepared to do some education. There’s a good chance the other person’s first reaction will be “but you don’t seem/look/act that autistic” or “I never would have guessed” or some other similarly awkward reply.

Preparing a short script describing autism as a neurological condition that impacts your communication, socialization and sensory processing can be helpful. The operative word here is short. You don’t need to give the person a TED talk on autism. Just share a few facts relevant to your situation, including what kind of accommodations or supports you’re requesting.

If you aren’t going to request accommodations, it’s probably best not to disclose in a work situation, unless you’re the kind of person who is confident with being out to everyone. Because of the stigma associated with ASD, the risks of workplace disclosure can be significant and irreparable.

There is always the possibility that disclosure will bring with it the subtle, hard-to-prove sort of discrimination that doesn’t rise to the point of being actionable under law. Although autism falls under the purview of the Americans With Disabilities Act, human social interaction is unpredictable and fraught with gray areas.

disclose2You may be able to request accommodations or supports without using the word autism, if that feels safer. For example, if you have a job doing data entry in a noisy workspace, you can explain to your supervisor that wearing noise canceling headphones will enhance your concentration and make you more productive.

If this request is well received, you don’t need to disclose your disability if you prefer not to. If it’s not received well, you’ll likely have to disclose that you’re autistic to gain accommodations under the Americans With Disabilities Act. It’s a good idea to do some research about your rights and your employer’s obligations under ADA before proceeding. For example, here is a list of common types of accommodations.

While ADA provides a minimum set of rights and obligations, some disability-friendly workplaces may be willing to do more to accommodate employees. On the other hand, be aware that small businesses (fewer than 15 employees) are not subject to ADA requirements. That doesn’t mean that a small business won’t be willing to work with you on accommodations, just that they aren’t required to under law.

When to Disclose

There is one more caveat to the choice not to disclose. If you don’t share information about your disability upfront, sharing it when you find yourself in a bind will probably not be helpful. For example, two months into a new job, your supervisor calls you into his office and says you’re being put on probationary status due to poor performance. This is not the time to disclose that you’re struggling because you really needed to get all of your instructions in writing or you need to have tasks broken down into smaller elements with more closely supervised due dates . . . because you have autism.

If you know you’ll need accommodations to successfully complete work or school tasks, ask for them upfront. If you discover that you need accommodations in the course of doing a task, request them as soon as possible. Don’t wait until you’re on the verge of disaster. This will be seen by most people as “using your disability as an excuse.” Fair or not, that’s how it will be perceived, possibly making it harder to gain the needed accommodations or even to keep your job in the long run.

There is also a special situation in which you may need to unexpectedly disclose your condition: an emergency. Some autistic people carry a card or letter in their wallet briefly describing what ASD is and how it might affect their responses in an emergency. If you lose speech, respond negatively to being touched by strangers, or have sensitivities to flashing lights or loud noises, this information can be especially helpful for law enforcement and other first responders. This type of disclosure can prevent police or emergency medical personnel from mistakenly thinking that you’re drunk or intentionally uncooperative.

How to Disclose

I’m going to step backward here a bit and address this to those who are diagnosed and those who aren’t because disclosure is something that I found taking place at all stages of the journey. In the very early days of learning about ASD, you may find yourself needing to talk about your suspicions or realizations with someone close to you. As you move through the self-discovery and diagnostic process, you may need to talk with family members to gather information about your childhood or confirm details about yourself.

Disclosure doesn’t only happen after a diagnosis. It can take place in stages, along a continuum. So here are some suggestions that may apply during different stages of the process:

  • Request a formal meeting or schedule a conversation. This signals that what you intend to say is important. Most appropriate for work and school related disclosures. Also good for situations where you’re concerned that the other party may not take you seriously.
  • Raise your diagnosis informally in conversation, when the opportunity arises. Probably more appropriate for those you anticipate being supportive.
  • Share an article about ASD. This is a good way to open the “does this sound like me?” conversation with someone close to you. 
  • Send an email or letter disclosing your diagnosis and sharing relevant background information about ASD. Good for disclosing to people you find hardest to tell, for example family members who you’re concerned might have a critical reaction. 
  • Share a form letter or informational flyer. An efficient way to share key facts in situations like emergencies or when requesting accommodations from public places (like a theme park). The book Ask and Tell has some good examples of form letters for specific situations.
  • Enlist an ally. If you’re faced with an especially hard disclosure situation, an ally can help you deliver the news, answer questions and/or offer moral support, especially if there’s a chance you might become nonverbal during the encounter.


Why Are You Disclosing

Ultimately, this is the most important question. Before you disclose to someone, ask yourself what you expect to happen. Are you disclosing to ask for accommodations or understanding? Are you seeking acceptance and support?

What if you don’t get what you’re seeking? Sadly, this is often the outcome. Disclosure is hard. It requires a certain amount of fortitude, not just for the act of disclosing but for standing up to all that follows in the wake of it. Think it through, go slowly and enlist support from trusted people in your life.

Up next: An Evolving Sense of Self

Adult ASD: Moving Forward After Diagnosis

This is part 12 in the “I Think I Might Be Autistic” series.

The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?

Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.

It also allows me to say this: if you think you’re an aspie or autistic–if you’ve done the research and talked to other people on the spectrum and see yourself in them, if you’ve identified a long list of autistic traits in yourself and come to the conclusion that ASD describes your particular set of neurological differences–then you are very likely correct. With or without an official-looking paper diagnosis, I think we are our own best judges of our neurology.

So, yes, getting diagnosed was worth the time, effort and expense for me. Yes, I’m fortunate to be in a position to have access to the resources I needed to pursue it. Yes, I also believe that self-diagnosis can be valid.

One of the reasons I’ve written in detail about the process is because I know that not everyone can afford or has access to a diagnosis. Not everyone is ready to pursue getting diagnosed. Not everyone has the executive function or the emotional resources to run the gauntlet of medical and mental health providers. Not everyone needs or wants a formal diagnosis.

But I think everyone who has bothered to read 11,000+ words of this series probably shares my interest in self-discovery. We know that we’re different and we want to know why and how and what that means. I spent less than 8 hours with the people who diagnosed me, but I’ve spent hundreds and hundreds of hours researching and writing about being autistic. That, ultimately, is what matters most to me.

My diagnosis, though it allowed me to put one set of questions to bed, has raised plenty of others.

  • Are there things in my life that I want to change?

  • Should I go for therapy?

  • Who should I tell?

  • How?

  • What does it mean to be Autistic?

These aren’t questions I can answer conclusively, even today.

Time to Change?

Once the newness of the diagnosis began to wear off, I was faced with the question of what to do with this new knowledge. I have a 10-page report from the neuropsychologist listing my cognitive strengths and weaknesses. I’ve become more familiar with and conscious of the areas where I struggle.

I’ve been told, not for the first time, that therapy would be beneficial. It’s an idea that I keep kicking to the back of the line, intent instead on rigorous self-examination. Like everything else I write about here, that’s my personal choice and not necessarily one that’s going to be right for anyone else. I’m not even sure if it’s entirely right for me.

Slowly, I’ve been working at making specific changes. I’ve written about being more flexible, allowing myself to stim more, trying to reduce my insomnia and nightmares, learning to translate from aspie to NT and back, and exploring my emotions.

I’ve also written about the things I’ve decided need accepting rather than changing: my lack of empathy, my anxiety, my tactile defensiveness, my love of being alone. My litmus test for change vs. acceptance is simple: is the cost of changing this thing higher than the benefit I’ll gain from the change?

Some changes require little more than mindfulness or occasional reminders; other changes require me to move out of my comfort zone and face some hard truths. The outcome–or at least the goal–is that I struggle less with some aspect of my life. Those are the good changes, the ones I’m eager to make.

Other changes feel pointless to me. These are often the changes that would make other people more comfortable by making me seem less odd. With all of the things I could be working on, I don’t see the point of investing my limited energy in those types of changes.

In fact, since getting diagnosed, I’ve become more echolalic, more stimmy, less conscious of censoring myself. I’ve become gentler and more compassionate with myself. I push myself less; cut myself slack where I wouldn’t have before. Not because I see myself as disabled, but because I see myself as a person in need of care.

I never really gave much thought to self-care before. I often demanded a level of performance and perfection from myself that I wouldn’t have expected from another person. I was so busy pushing myself to be better, to get things right, that I often neglected to be kind to myself.<

Perhaps that’s the biggest change I’ve made so far: I’ve resolved to be kind to myself.

Obviously, these are very personal decisions. The constellation of things that I choose to work on changing is unique to me. It continues to shift and grow. There are days when I think, “screw this, why should I change anything?” There are days when I think it would be nice to be “normal” for a day, to not have to struggle so much with simple things.

Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.

That’s the best change of all.

Up Next: Disclosure

Adult ASD: Receiving a Diagnosis

This is part 11 in the “I Think I Might Be Autistic” series.

The day of the follow-up appointment finally arrived. As I rode the elevator up to the fourth floor, I felt my anxiety skyrocketing. I focused on breathing. I mentally rehearsed what I was going to say to the receptionist.

“I have a 2 o’clock appointment with Dr. H” isn’t complex conversation, but when I’m at a DEFCON 1 anxiety level, I can forget my own name.

The ten minutes I spent sitting in the waiting room felt interminable. I was contemplating a dash to the restroom when Dr. H poked his head around the corner and called me in.

If you want an example of how, er, unusual my conversation style can be when my social resources are low, this is the way our conversation began:

Dr. H: “Good to see you again. What’s new since you were here last time?”

Me: “You rearranged your chairs.”

Well, he had. The last time I visited, there was one guest chair facing his desk. Now there were three. That was not only new, it was messing with me, because I had to decide which one to sit in and none of the options was comfortable.

Too many chairs!
Too many chairs!

I settled on the middle chair and waited patiently while he made small talk about I have no idea what. Okay, semi-patiently. There was some discreet stimming happening. Maybe a lot.

Eventually–and I think the delay was him wanting to break it to me gently–he got around to telling me first how well I did on the cognitive testing and then that I’m clearly on the autism spectrum. I was relieved and yet somehow it felt unreal. For a moment I thought maybe I was dreaming because I’d been having a lot of dreams about the evaluation and follow-up appointment.

My nonresponse confused him, I think. Over the course of our one-hour appointment, he asked me three times how I was feeling about the diagnosis. Each time I said something like, “I guess I’m not that surprised.” I thought I’d feel something more strongly, but I was too focused on the information he was giving me about my test results to have any real feelings.

Seeing my cognitive processes summed up in a neat table of numbers and percentiles was fascinating. I hadn’t had a full IQ test since I was kid and back then no one would let me see the results.

Overall, the tests told me what I had suspected. My working memory, elements of executive functioning and verbal functioning are impaired. My nonverbal reasoning and verbal comprehension are significant strengths. The rest of my test scores fell in the average ranges.

I passed the ADHD test with flying colors, meaning that my distractibility is related to AS/executive function. This wasn’t a surprise, because my attention problems are situational rather than across the board.

The tests also illustrate how it’s possible for me to be both very literate and not very verbal. I scored highly on comprehension, spelling and vocabulary–receptive language skills or the ability to understand and process incoming words. I scored poorly on visual to verbal tasks (translating written words into speech), verbal working memory (remembering and repeating back spoken words) and verbal fluency (describing or listing words verbally). These are all expressive language skills.

There is definitely faulty wiring between my thoughts and my speech. There is a measurable  discrepancy between my receptive and expressive language capacity. It feels good to have concrete evidence.

You’ll often hear that ASD is associated with an uneven or spiky cognitive profile. While everyone has some variation in their cognitive abilities, the variation tends to be within a particular band (i.e. clustered around the 70th and 80th percentiles) rather than widely dispersed.

To give you an idea of how dramatically disparate the cognitive abilities of autistic individuals can be, I had a bunch of scores in the 98th and 99th percentiles, but I also had a cluster that included the 8th, 10th and 12th percentile. I am simultaneously off-the-charts extraordinary and bottom-of-the-barrel impaired. In yet other areas, I’m perfectly average.

One thing that really struck me in reading about spiky cognitive profiles and autism is that a profile like mine (nonverbal > verbal) is more strongly associated with impaired social skills than the reverse profile. It’s also interesting to note that the dissociation between nonverbal and verbal abilities grows more significant with age.

After reviewing the test results and confirming that I was okay with my diagnosis, Dr. H emphasized that he was most concerned about my social anxiety and felt that counseling would help me cope better with my daily life. He gave me a referral to a counselor experienced in working with autistic adults and I agreed to think about it. After thinking about it a great deal, I wrote this.

It took awhile for my diagnosis to sink in. At first, it didn’t feel real. In a way, I’d known for a while that I was an aspie. Dr. H even jokingly said at one point toward the end of our follow-up appointment, “You made a good diagnosis, doctor.”

In the days that followed, I slowly started to feel the peace of mind that I’d been craving settle in. By the time I received the written report on my tests, with its official looking diagnostic conclusions, I finally felt some closure.

Next: Moving Forward After a Diagnosis

Adult ASD: Waiting for a Diagnosis

This is Part 10 in the I Think I Might Be Autistic series. 

If you’ve read through the components of my ASD evaluation, you might be wondering but what about the Asperger’s questionnaire?

There wasn’t one. I didn’t complete a written screening or diagnostic test like the RAADS-R or AQ. My ASD diagnosis was based on the diagnostic interview, the outcomes of the cognitive/neuropsychological testing and behavioral observations made by Dr. H and B during my visit.

However, between the diagnostic interview and the behavioral observation, the key questions on the screening instruments were addressed in detail. The diagnostic interview covered questions on my special interests, relationships, social preferences, sensory sensitivities, attention, language pragmatics and fine motor skills. The behavioral observation included general presentation (grooming and dress), gait, speech (rhythm, rate and volume), demeanor, verbal skills, eye contact, movement patterns and conversation habits.

The interview and testing took about five and half hours. It was exhausting. We went straight through lunch, though both B and Dr. H told me that I could ask for a break at any time. The thing is, when I’m that engaged in something, I forget that I need to eat. I may be hungry, but the hunger signal gets muted.

So, exhausted and hungry, wishing I’d taken The Scientist up on his offer of a ride, I scheduled my follow-up appointment and stumbled out to the car. My evaluation was done. In three weeks I’d have a diagnosis.

Or not.

A vague sense of panic settled in as I started rehashing every detail of the appointment. Worse, I knew that I had three weeks ahead of me to perseverate on what I’d said and done and not said and not done. Three weeks to wonder if I’d done “too well” on the cognitive tests, if I’d instinctively made an effort to “pass” in the interview, if I’d withheld key details or reflexively covered my weaknesses.

Three whole weeks to alternately tell myself that this had been the best and the worst thing I’d ever done for myself.

The days passed about as quickly as you’d expect. I was restless and unsettled, plagued by a string of nightmares. The idea that Asperger’s might be something I’d talked myself into or imagined haunted me. My biggest fear–the one I couldn’t shake–was that Dr. H would tell me I wasn’t autistic, that in fact there was nothing wrong with me.

Then what? I’d found this explanation that fit so well. If someone “officially” took it away from me, I would be lost again, left to start over in search of a new, better explanation.

Next up: The Follow-up Appointment – Receiving a Diagnosis

Adult ASD: Seeking a Professional Diagnosis

Part 6 in the I Think I Might Be Autistic Series


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