Category Archives: Diagnosis

Diagnosis

Comorbid Conditions: Diagnosis and Misdiagnosis in Autistic Women

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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

Do We Need a Female Diagnostic Model for Autism?

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I’m sure you can guess what my answer to that question is. My post this month at Autism Women’s Network, Understanding the Gender Gap: Autistic Women and Girls, outlines some key ways in which autistic girls and women often don’t fit the traditional diagnostic models for autism and Asperger’s syndrome. In part, this is because the traditional models were developed primarily by observing autistic boys.

For anyone who reads the article, I have a few questions. If you identify as female, do you think the traits I listed in the article fit you? Do you think including traits like that in the diagnostic model would make it easier for someone like yourself to be diagnosed? If you identify as male (or not female), do you feel like any of the traits also fit you?

I’m asking that last question because it also occurred to me that part of the problem with applying the current diagnostic model  to adult women is that it was developed based on autistic children. When I started researching Asperger’s syndrome, I kept coming across information aimed at screening children and had trouble seeing myself in the most commonly mentioned traits. By the time we reach adulthood, we’ve often made a lot of adaptations that conceal our autistic traits. So I suspect that some of the social traits in particular might also apply to many adults, regardless of gender. I’m also curious what other traits you think should be part of the diagnostic criteria or how the diagnostic criteria could be modified to be more inclusive.

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And finally, I’m taking next week off to go visit my daughter. Enjoy the rest of November and if you celebrate Thanksgiving, have a great one!

Diagnosis

Diagnosis Barriers for Autistic Women and Girls

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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 . . .

Diagnosis

Adult ASD: My Evolving Sense of Self

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

In addition to the new set of questions that my diagnosis raised, it’s also forced me to think about my identity and how I want to own being autistic. I wrote a bit about identity very early on in this blog. At the time I challenged myself to revisit the subject in the future, after I’d had more time to educate myself and think about the labels I’ve been given.

In the past couple of months, I’ve been using autistic and aspie interchangeably to refer to myself. Not because the DSM-V will be eliminating Asperger’s but because it feels more comfortable. I’ve also been learning about the social model of disability, which says that disability is created by the way society is organized rather than by a person’s differences.

My previous concept of disability had centered on the medical model, which says that people are disabled by their differences, which need to be fixed. Because I was resistant to the idea of being seen as someone who is “less” or “defective” I was resistant to thinking of myself as disabled. The social model of disability has given me a much more positive way of thinking about disability. It looks at a person’s disability and asks what kind of supports that person needs, not what’s wrong with them.

The social model feels like a good fit for Autistic people. I don’t want to be fixed but there are some things that would make my life easier.

Learning to be Autistic

Since I’ve begun blogging, I’ve noticed that I have a constantly evolving sense of self. The more I write and read and talk with other people, the more my understanding of who I am shifts and solidifies.

Little by little, I’m learning what it means to be autistic.

You may notice that I generally use “small a” autistic rather than “capital A” Autistic in my writing. That’s intentional, not an oversight.

Autistic refers to Autistic people as a cultural group. For example, I consider my blog Autistic space–a safe space where Autistic people can gather to share information about how we experience the world. I make an effort to participate in Autistic advocacy events online, like the recent flashblogs. But I don’t feel ready yet to be an advocate in the sense that many other Autistic people are.

The funny thing is, I never thought about being advocate at all until recently. I started blogging as a way to process this huge new self-discovery. Writing has always been my primary way of processing. Big thing to process equals a need to write hundreds of thousands of words in response.

As I got involved in the online blogging community, I slowly began to realize that like it or not, I am an advocate. That’s something that I’ve come take very seriously. Words have consequences. We can lob them like rocks or wield them like a scalpel; we can use them to soothe or incite. Mostly I want to use them to understand and to promote acceptance–self-acceptance and acceptance of Autistic people in general.

I feel like I’m still learning to be autistic. This is personal for me right now. Perhaps this is my way of being an advocate–the constant dissecting and researching and writing and explaining and oversharing.

At some point I’d like to also feel comfortably Autistic, but for now, discovering my “small a” autistic self is an all-consuming process.

Diagnosis

Adult ASD: Disclosure

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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.

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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.

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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

Diagnosis

Adult ASD: Moving Forward After Diagnosis

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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

Diagnosis

Adult ASD: Receiving a Diagnosis

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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

Diagnosis

Adult ASD: Waiting for a Diagnosis

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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

Diagnosis

Adult ASD Evaluation: The Tests

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This is Part 9 in the I Think I Might Be Autistic series. In Part 8 I covered the diagnostic interview portion of my autism evaluation and in this part I’m covering the cognitive tests, ADHD test and psychological screening questionnaires.

Cognitive Testing

Cognitive testing for ASD is a mix of verbal and nonverbal tests.

Some I found easy; others were a challenge. One actually made me bang my head on the desk, though I stopped as soon as I realized I was doing it because . . . inappropriate. Most were designed to start out easy and scale up in difficulty so that the last few were very challenging.

If you’re planning to be evaluated, you may or may not want to read about the tests I took in detail. Consider this your spoiler warning.

Here is a list of the tests I took with a short description of each:

WAIS-IV (full): An adult IQ test that measures verbal comprehension, perceptual reasoning, working memory and processing speed.

  • The verbal portion covered things like describing the similarities between two words (i.e. anchor and fence, statue and poem, allow and restrict), defining vocabulary words and answering general information questions. I found the “similarities” test challenging because some of the pairs had conceptual rather than concrete similarities. The other two sections were fairly easy because I’m both a walking dictionary and an encyclopedia of random facts.
  • The perceptual reasoning portion was a series of visual puzzles: using colored blocks to reproduce a design, deducing which design comes next in a series, and choosing shapes to form a larger shape. These tests were fun, although I found myself guessing at times.
  • The working memory tests involved repeating back strings of digits in forward and reverse order and doing math problems verbally. By the end of the digit string tests I was rocking back and forth in my chair with my eyes closed tight. The math problems, on the other hand, were fun. All of these tests made me conscious of how much I talk out loud to myself when my brain is working hard.
  • The processing speed portion involved locating symbols and coding a series of numbers into symbols. These were both fairly straight-forward pattern recognition tests that required balancing speed and accuracy.

Woodcock-Johnson III (partial): A test of academic skills that included orally identifying written words, orally spelling words given by oral prompt, and doing some math problems on paper, ranging from pre-algebra to basic calculus. I got tripped up by “questionnaire” on the spelling test. It’s one of those words that I always use autocorrect on. There is no autocorrect on an oral spelling test.

Wechsler Memory Scale IV (partial): The portion of this I took tested auditory memory. It involved two parts:

  • listening to a brief factual story and retelling it, including as many facts as possible, then responding with true/false answers to factual questions about the story (two trials)
  • listening to a long list of word pairs and then responding to a word prompt with the correct paired word (interminable number of trials)

I struggled mightily with both of these. My working memory is poor, especially when working verbally under pressure.

Rey-Osterrieth Complex Figure test: A measure of organization and planning skills as well as fine motor skills. It involves reproducing a complex drawing using a series of colored pencils that allow the evaluator to track the order in which the figure was drawn as well as the accuracy of reproduction.

Thirty minutes later, without any warning, I was asked to reproduce the same figure from memory. This did not go well. If you looked at the sample figure I linked to above, what I managed to reproduce the second time was basically a box with an X through it, a flag sticking out the front and bowling ball floating in the upper right corner. Bizarrely, I still remember exactly what it looked like and could draw that from memory months later.

Word Fluency: A timed test in which I had to think of as many words as possible that fit the following categories: animals, words starting with A, words starting with F, and words starting with S. These were challenging–I started out with a good head of steam but once I lost my momentum, I started perseverating on the words I’d already named instead of thinking of new words. Until I realized that I could name things from around the room that fit the prompt. Aspie adaptation for the win.

California Verbal Learning Test: Another test involving recalling items from a list with multiple trials. Again, I struggled with this one. The correct strategy, which I realized on the fourth trial, was to chunk the words by category to make recalling them easier. There were only five or six trials, so my realization came kind of late. This test also had me closing my eyes and talking to myself out loud because I was so frustrated with how difficult it was. There might have been some cursing. I was getting tired.

Trailmaking test: A connect the dots type of test–first connecting numbers only and then connecting an alternating sequence of numbers and letters. This measures visual scanning and sequencing ability. Surprisingly, I was quicker at the second series, even though it was the more difficult task.

Stroop Color and Word test: A series of three visual to verbal tests:

  • verbally reading off a list of color words (blue, red, green) printed in black ink
  • verbally giving the color of a series of Xs there were printed in blue, red or green ink
  • verbally reading a list of color words, with each printed in a different color ink (i.e. RED printed in blue ink)

This test was deceptively easy. So much so, that when I saw my results, I was shocked. I scored in the “impaired” range on the first two and in the “high average” range on the third (and hardest) test.

Performing better on the more challenging versions of the Stroop and trailmaking tests leads me to believe that I’m more motivated to perform accurately on challenging tasks and if a task is too simple, I get bored and easily distracted.

Other Neuropsychological Tests

Grooved Pegboard test: A timed test of fine motor skills that consists of putting metal pegs in a pegboard, first with the right hand and then with the left. The only problem I had with this one was accidentally switching back to the right-handed order of inserting the pegs (right-to-left) when I was doing the left-handed test (meant to be completed left-to-right).

Reciprocal Motor Programs test: A test of how well I could repeat and then reverse repeat a series of finger taps.

ADHD Test

IVA Continuous Performance Test: This was the only cognitive test conducted by computer. The computer provided visual and auditory prompts at random intervals. If the prompt was a 1, I had to click the mouse. If the prompt was a 2, I had to refrain from clicking. The test was 21 minutes long. By the halfway point, I was stimming ferociously. I was also determined to ace this test (out of fear of being misdiagnosed with ADHD perhaps) so first I pretended that I was an air traffic controller and if I missed a cue, an airplane would crash. When that stopped working, I told myself that if I missed a cue, a puppy would die. Yeah, I take this stuff way too seriously. It took me awhile to wind down after this test was over because I sent myself into a state of extreme hyperfocus.

Questionnaires

I also completed four self-report questionnaires:

MCMI-III: This consisted of 180 true-false questions that test for 14 personality disorders (e.g. schizoid, depressive, compulsive) and 10 clinical syndromes (e.g. anxiety, bipolar, PTSD). There were also some funny questions, like “I am currently in an airplane” meant to verify that I was paying attention. Or not delusional. Hard to say.

Beck Depression Inventory (BDI-II): A 21-question self-report instrument for measuring the severity of depression.

Beck Anxiety Inventory (BAI): A 21-question self-report instrument for measuring the severity of anxiety.

Current and Childhood ADHD self-report: A self-report instrument for measuring the presence of ADHD symptoms now and during childhood.

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Next up: Waiting for the Results

Diagnosis

Adult ASD Evaluation: The Diagnostic Interview

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This is Part 8 in the I Think I Might Be Autistic series

The morning of my appointment, I was incredibly nervous. My biggest fear was that I would go through this process and be told that I was officially not autistic–that I wouldn’t come across as “autistic enough” for a clinical diagnosis.

Fortunately, it turned out that I’d found a doctor who has worked with adults enough to know that we have many coping mechanisms and workarounds. He didn’t expect me to present the way a five-year-old boy would. He acknowledged that being an adult autistic doesn’t necessarily mean not attending your cousin’s baby shower; it can mean going to the baby shower and spending a good part of the afternoon hiding out in the kitchen (one of his examples).

The Diagnostic Interview

The first part of my evaluation was a diagnostic interview. I turned in my questionnaire to the receptionist and when Dr. H called me into his office, he’d obviously reviewed it. He started off by asking me to talk about why I suspected I have Asperger’s. I was nervous so I rambled around a lot. Looking back, I probably should have looked at my notes and used them as a guide, but my brain was going a hundred miles an hour.

Once my initial thoughts fizzled out, Dr. H. started working through the questionnaire, confirming symptoms I’d answered positively and asking clarifying questions. As I relaxed a little, the conversation became less structured. We talked a lot about my childhood, with the doctor encouraging me to give examples or tell stories to illustrate certain points. Gradually, he began inserting comments about Asperger’s, explaining how some of my symptoms were typical and how they fit into the diagnostic picture.

The interview lasted about an hour. By the end of it, I felt like we’d hit on all of the key points I wanted to talk about as well as some that I hadn’t considered important. Dr. H concluded the interview by explaining that he wanted to evaluate me for ASD, ADHD and Social Anxiety Disorder. The second one was a surprise but I was glad that he was forming his own hypotheses in addition to the one I’d presented.

He then explained a little about how cognitive testing works and about the qualifications of B, the ASD testing specialist who would administer the tests.

The Part Where I Provide Plenty of  Autistic Behavior for Observation

When we moved to B’s office, I got a chance to demonstrate two of the symptoms I’d described in the interview: face blindness and delayed auditory processing. Dr. H introduced me to B and she cheerfully said, “Yes, we already met–you asked me where the restroom was when you came in.”

Completely thrown by the fact that I didn’t recognize her, I said “Really? Okay.”

As I was kicking myself for that useless reply, Dr. H asked, “Got plurdled gabbleblotchits on a lurgid zoo?”

I reflexively replied, as I always do when I have no idea what someone has said, “Sorry?”

“What would you like to be called?” he repeated.

I probably could have gone home at that point because not recognizing that I’d already met B, not being able to smooth over the awkwardness that followed, not greeting her with my name, not understanding what Dr. H was saying, being more focused on orienting myself in the room than connecting with the person I was going to work with–in less than 60 seconds, I’d exhibited a boatload classic autistic behavior, much of it as a result of struggling to switch activities/environments, which is in itself textbook.

To her credit, B quickly put me at ease. She spent about ten minutes “getting ready” while I sat, mostly silent, and studied the colorful barcode prints on her wall. Honestly, I wouldn’t be surprised if the time she’d spent puttering around with her supplies was more for my benefit than hers. By the time we started on the cognitive testing, I was feeling reasonably focused again.

Next up: Cogntive, ADHD and Psychological Screening Tests