Tag Archives: diagnosis

Adult ASD Evaluation: The Tests

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

Adult ASD Evaluation: The Diagnostic Interview

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

Adult ASD: Preparing for Your Evaluation

Part 7 in the I Think I Might Be Autistic Series

As I mentioned previously, there are different ways of getting diagnosed. Depending on what route you choose, your evaluation may involve questionnaires, cognitive tests and/or a diagnostic interview.

My evaluation was done by a neuropsychologist, so I’m going to talk about that here. I hope other autistic individuals who’ve been professionally diagnosed will continue to share their stories in the comments to create a more diverse picture of what diagnosis can look like.

Neuropsychology is a field that looks at behavior in terms of brain function. Autism is a developmental disorder, not a mental illness, so diagnosing ASD is one of the areas that neuropsychologists specialize in. Clinical psychologists and psychiatrists who work with autistic patients will also use many of the same tests and procedures described here.

When I made my initial appointment, I was told that testing would take 4-8 hours and might be split over two or more appointments, depending on how fatiguing I found the tests.

A few days later I received a 17-page questionnaire in the mail. The instructions said to complete it and bring to my evaluation. The questionnaire covered personal and family mental health history, cognitive symptoms (memory, daily function, auditory/visual/balance, etc.), childhood development and an open-ended question about why I was seeking an evaluation.

I used the open-ended question to make my case. I started out with “I suspect I have Asperger’s Syndrome” and then listed my major symptoms as I understood them at the time: social awkwardness, rigidity, attachment to routine, intense interests, difficulty reading facial expressions and body language, clumsiness, etc. I tried to focus on the symptoms that fit the DSM categories first and then listed other less universally recognized symptoms after that.

Beneath the open-ended question was a set of check boxes that said:

Overall I think that there is:

  • nothing wrong with me
  • probably something wrong with me
  • definitely something wrong with me

wrongwithme

In true aspie fashion I checked the “definitely” box, crossed out “wrong,” wrote in “different,” then annotated it with a few descriptive sentences. In fact, I annotated a lot of the “ticky box” questions. By the time I was done, my questionnaire was a scribbled-on mess.

Whether you receive a history questionnaire or not, I strongly recommend making notes to bring to your appointment. The time you’ll spend with the doctor conducting your evaluation will be limited; it’s important to bring up everything you think will be helpful in getting an accurate diagnosis.

If you find speaking about your symptoms difficult, prepare a concise (no more than 1 page) written summary to give to the doctor at the start of your appointment. Autism causes communication difficulties. There’s nothing wrong with telling the doctor that you prefer to use a brief written description of your concerns as a starting point.

Most importantly, as you prepare for the appointment, try to relax. I know it feels like there’s a lot riding on the outcome, but all you have to do at the appointment is be yourself. This is one time when being your own hot mess of an autistic self is encouraged.

Preparing for your Evaluation

  • If the doctor’s office sends you a history and/or symptom questionnaire, take it seriously. Fill it out as completely as possible, providing specific examples where you can. Don’t hesitate to add additional information that you feel is relevant.
  • Make notes regarding what you want to talk about as part of your diagnostic interview.
  • If necessary, prepare a written summary of your symptoms/signs/traits for the doctor.
  • If you have questions, write them down and bring them to the appointment so you don’t forget.
  • Try to relax and remember to be yourself.

Up next: Adult ASD Evaluation – The Diagnostic Interview

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

Adult ASD: Self-diagnosis or Professional Diagnosis?

Part 5 in the I Think I Might Be Autistic Series

Whether you choose to seek a diagnosis or not is a personal decision. As an adult, there’s a good chance you don’t need a diagnosis. You’ve done your research, come to the conclusion that you’re on the spectrum and that’s good enough for you.

This is commonly known as self-diagnosis and when done correctly, it’s largely a well-respected approach in the ASD community. The primary reason? Getting an official diagnosis as an adult is difficult:

  • Asperger’s Syndrome and autism present differently in adults than in children. Finding someone trained and experienced in adult diagnosis can be challenging.
  • Many adults face numerous misdiagnoses before getting correctly diagnosed with Asperger’s or autism.
  • Women in particular are often misdiagnosed because they present differently than male aspies on whom the traditional model is based.
  • Diagnosis can be expensive and an adult evaluation isn’t covered by most health insurance.
  • Diagnosis can lead to bias, stigma and/or create practical limitations, like not being able to join the military or having your parental rights questioned.

So how does self-diagnosis work? First, be prepared to do some work. Self-diagnosis isn’t as simple as taking the AQ and deciding you’re an aspie. Screening questionnaires can be a good place to start, but they’re just that: a first step.

(click on the graphic for a larger version)
(click on the graphic for a larger version)

Here are some additional steps you can take to verify, challenge or test out your belief/suspicion that you’re on the spectrum:

  • Look at the DSM and/or ICD criteria for ASD (DSM-IV-TR criteria for Asperger’s and ASD, DSM-V criteria for ASD,ICD-10 criteria for Asperger’s and ASD).
  • Be sure you understand what each of the criteria means. ASD criteria manifest differently in adults than in children, so look for examples of adult traits when considering whether the diagnostic criteria applies to you. It may also be helpful to think back to your childhood and try to determine whether you met the early signs of autism.
  • Read books on the subject, both nonfiction (like The Complete Guide to Asperger’s Syndrome) and personal narratives (like Pretending to Be Normal or The Journal of Best Practices).
  • Read about the experiences of Autistic adults (scroll to the bottom of the linked post for a list of Autistic bloggers). If possible, talk with one or more Autistic adults. Comparing experiences with diagnosed adults can be validating. Also, there are many Autistic adults online (Tumblr, Twitter, Facebook, bloggers) who are happy to answer questions about specific aspects of autism and being autistic. Just keep in mind that Autistic adults are people too and we have a broad range of opinions as well as differing comfort levels when it comes to sharing our personal experiences.
  • Make a realistic assessment of your AS/autistic traits based on your reading.
  • Talk with one or more trusted persons in your life about your self-assessment. Do they see the same traits that you’re perceiving? Share a list of ASD traits (female ASD traits) with them. Do they see traits that you haven’t considered?
  • If you have access to childhood materials like report cards, school work, a baby book or old home movies/videos, review them in light of the childhood symptoms of AS/autism.
  • If possible (and if you feel comfortable) ask your parents about your childhood. If you don’t want to frame your questions in terms of autistic symptoms, you could simply ask things like “Did my teachers say I [did X or behaved like Y]?” or “Do you remember me doing [X, Y or Z] when I was a toddler?”

As you do your research, keep in mind that not everyone has every symptom. Symptoms can change in severity and presentation over a lifetime, becoming either more or less noticeable with age. In fact, it’s not unusual to find that as you age, one trait (like sensory sensitivities) becomes more manageable while another (like executive dysfunction) increases in severity.

By the time you’ve completed your research, you should have a good idea of whether Asperger’s syndrome or autism is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need (or have a specific reason) to seek out a professional diagnosis, which can be a long and difficult journey.

Even if you choose to pursue a professional diagnosis, you may want to work through the self-discovery process first. Often, getting diagnosed as an adult requires making a solid case for why you think an autism diagnosis fits you.

Weighing Self- vs. Professional Diagnosis

  • Obtaining a diagnosis as an adult can be very difficult.
  • Not everyone needs or wants a professional diagnosis.
  • Self-diagnosis is widely accepted in the autism community when done with diligence.
  • Self-discovery is a good first step toward professional diagnosis if you choose to pursue it.

Next in the series: Seeking a professional diagnosis

I Think I Might Be Autistic (Part 4)

This is the 4th part in an ongoing series about being diagnosed as autistic at the age of 42.

Mourning the Loss

Eventually reality set in. I’m autistic. 

Not the happy “Yay! I’m different! I’m unique! I’m special!” autistic.

More like “Holy crap . . . I’m defective . . disabled . . . challenged . . . never going to get any better” autistic.

This was when the mourning began. Once the bright shiny new this-explains-everything stage wore off, I started thinking about the other side of being autistic. I wasn’t going to “outgrow” my social awkwardness. I wasn’t going to wake up one day and suddenly have a balanced emotional life. The challenges I faced weren’t imagined and they weren’t going to magically disappear. They were with me for life.

This is me. This is always going to be me. Forever.

Talk about hard realizations.

The questions that arose were mostly  variations of “how would my life have been different if I wasn’t autistic?” As I tried to envision taking away this or that autistic part of me, it became obvious that Asperger’s was responsible for a lot more than what makes me weird. It’s responsible for many of my strengths, too. Take it away and I’m no longer me.

That person I was mourning? She doesn’t exist.

Mourning the Loss

  • Don’t be afraid to acknowledge your anger, disappointment, sadness or other negative feelings.
  • Recognize your strengths along with your weaknesses.
  • You’ve always been autistic and always will be. However, that doesn’t mean you can’t work on learning social skills, developing coping mechanisms or changing your lifestyle/environment in ways that support you.

girl

Healing the Child (or Younger Self)

Growing up undiagnosed is hard. There is a lot of pain that comes from knowing that you’re different but not knowing why. Asperger’s gave me an explanation, but more importantly it gave me a starting point for healing that scared, confused kid inside me.

As I worked back through the more difficult aspects of my childhood, I felt like I was somehow mothering my younger self–revisiting each moment, looking at it in a new light and telling that younger version of me that it wasn’t my fault, that I’d done the best I could, that to expect more from me in the absence of support would have been unreasonable.

I wasn’t “obviously” autistic as a child–girls manifest ASD traits differently than boys in many cases and Asperger’s didn’t exist as a diagnosis in the 1970s.

I was, however, a handful. I was overly smart, easily bored, very curious and constantly in motion. Consequently, I got a lot of guidance from adults on how to behave properly. This reined in my more problematic behaviors, but it also made me feel like I was forever in danger of doing something “wrong,” especially when I “wasn’t trying hard enough.”

Being able to look back at my childhood and see that my behaviors were a result of my brain chemistry and not a result of “not being good enough” allowed me to begin to heal some of those lingering insecurities.

Learning more about Asperger’s helped me understand that I was bullied not because I was weird, but because I was socially inept. Reading about selective mutism gave me an explanation for my largely silent elementary school years–the ones where I never spoke in class unless forced to. Finding information about how ASDs manifest in girls shed light on why I had so much trouble maintaining friendships.

Each new bit of information absolved me of some perceived failure as a child and helped me begin healing some very old wounds.

Healing

  • Learning more about Asperger’s/autism in children can help you understand challenges you faced in childhood.
  • As an adult, you can choose to forgive the people in your life who hurt you as a child.
  • It may help to imagine your adult self sharing your new information with your child self as a way to offer comfort or explanations for unhealed childhood wounds.
  • If you find yourself having distressing reactions that are difficult to cope with, consult with a mental health professional or a trusted friend/mentor for help.

Coming next: Self-Diagnosis or Professional Diagnosis

Developing a Sensemaking Narrative

This is Part 3 in the “I Think I Might be Autistic” series. 

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Working my way through The Complete Guide to Asperger’s Syndrome, I found myself revisiting moments in my life that had been confusing, painful or traumatic. Suddenly, so much of my life made sense in the context of aspie traits.

Difficulty making friends? Impaired social communication skills
Clumsy? Motor planning deficit
Poor handwriting? Problems with fine motor coordination
Massive stamp/coin/doll/baseball card/Lego collections? Abnormally intense interests
Not a hugger? Tactile defensiveness
The odd reactions I get from people? Poor eye contact, flat affect, inability to read body language

and on and on and on . . .

When I got to Attwood’s description of the little aspie girl lining up her Barbie dolls and their clothes instead of playing with them, I literally shouted with joy. There are other people like me! I’m not defective. I’m not randomly weird. I’m an aspie. One of many.

I’d found my tribe and it was good.

This process of giving meaning to experiences is sometimes known as sensemaking or creating a sensemaking narrative. It happens when our current way of understanding ourselves or our situation is inadequate. Without the Asperger’s piece of the puzzle, I was forced to cobble together incomplete explanations for my developmental history and my life experiences.

Once I had a basic understanding of Asperger’s, I could apply that knowledge to “make sense of” my life in a new way.

Petroglyphs, Mystery Valley, Bernard Gagnon ( Creative Commons Attribution-Share Alike 3.0 Unported)
Petroglyphs, Mystery Valley, Monument Valley Navajo Tribal Park, Arizona                                    Bernard Gagnon (Creative Commons Attribution-Share Alike 3.0 Unported)

Sensemaking has a few key steps, most of which I found happening naturally as I processed my newfound identity.

The Sensemaking Process

  1. Shift in identity – identification as aspie/autistic
  2. Retrospection – looking back at key life events in the context of this new identity
  3. Building narrative accounts – retelling the story of your life in light of AS/autism
  4. Sharing your narratives – strengthening and preserving your stories by sharing them with others
  5. Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes

Each person’s sensemaking narrative is unique. Mine takes several forms: thought, speech and especially writing. Right now, my blog–including your comments and my replies–is the cornerstone of my sensemaking narrative.

Making Sense

  • As you learn more about AS/autism, does it help you better understand difficult or confusing life events?
  • Can you retell those events in a new way now?
  • When you’re ready, share your new understanding with trusted people in your life.
  • Sharing can take many forms: oral, written, visual or mixed media. It can be factual, fictional, derivative or a combination. This is your story. Tell it your way.
  • Don’t be afraid to revise and refine your story as your knowledge expands or your perception changes.

Coming next week: Mourning and Healing

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

I Think I Might Be Autistic. Now What?

Take-a-Test Tuesday has led to some readers realizing that they too might be on the autism spectrum. Their comments nudged me to start writing about a subject I’ve been meaning to tackle: my Asperger’s “origin story” or how I came to realize that I might be autistic and what happened in the wake of that realization.

As usual, I’m mixing personal narrative with a bit of advice based on what I learned from my experience. I hope that other Autistics and those who think they might be on the spectrum will add to what I have to say here by sharing their own experiences in the comments.

—–

So, you think you might be an aspie or autistic or somewhere on the autism spectrum. Now what?

First, take a deep breath. Relax. Nothing’s changed. You’re the same person you were before you took that test, read that article or had a lightbulb go off while talking to someone about autism.

I remember my first inklings that I might be an aspie. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. His first hint that he had Asperger’s was an online quiz that his wife asked him to take because she recognized so many aspie traits in him.

As they described the quiz questions, for the first time I realized that Asperger’s Syndrome is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. Down the list I went, nodding and thinking yes, yes, yes, ohmygoshyes.

I went in search of the Aspie Quiz and what really blew me away were the specific behavioral questions: Have you been accused of staring? Yes! Do you tend to talk too loudly or too softly? Yes! Do you have difficulty filtering out background noise? Yes!

How had I not seen this before?

now-what

I’d heard a similar interview with Finch back in 2009. Interesting, I’d thought at the time, but nothing more. I’d read quite a bit about autism, because I was drawn to the subject. It never occurred to me to ask why. I’d taken the Autism Spectrum Quotient AQ test several times in the past. Every single time I scored above the cutoff for being on the spectrum. Every single time I told myself that it was probably a fluke, or even more improbably, that most people likely scored that high.

For years I’d tiptoed around the subject of autism. Finally, at 42, I was ready to explore the possibility that I was autistic.
Processing your First Contact with Asperger’s or Autism

  • Nothing has changed; everything has changed.
  • Know that no matter how it feels right now, this can be a positive realization.
  • If you’re on the spectrum, learning more about what that means can help you understand yourself better and learn to cope more effectively with the challenges that an Autism Spectrum Disorder (ASD) presents.

Next Part in the Series: Paths to Realization and Is this Me?

Taking the RAADS-R Test

It’s Take-a-Test Tuesday and this week I’m taking The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R).

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a diagnostic instrument that is intended to be administered by a professional in a clinical setting. It was primarily designed to identify adults who often “escape diagnosis” due to a “subclinical” level or presentation of ASD.

The 80 questions on the RAADS-R cover four symptom categories:

  • language (7 questions)
  • social relatedness (39 questions)
  • sensory-motor (20 questions)
  • circumscribed interests (14 questions)

Its validity as a diagnostic instrument was assessed in a 2010 study in which the RAADS-R was administered to 779 people at 9 different clinics in the US, UK and Australia. This is an impressive undertaking; the variety of testing sites suggests that results of the study are highly generalizable (that they can be extended to the general population). However, like all of the other instrument validation studies I’ve seen, this one also has an imbalance in male-female ASD participants, with a greater proportion of males in the ASD groups.

Pros and Cons of the RAADS-R

Pros:

  • Self-scoring
  • Validated in a clinical setting by a multisite study with a large sample size
  • Provides overall and subscale scores
  • Includes questions to assess sensory-motor skills
  • Takes autistic childhood traits into account, even if they are no longer present

Cons:

  • Many questions phrased as always/only/never
  • Complex answer choices may be confusing for some
  • Questions skewed toward social relatedness
  • Longer than most other tests

Taking the Test

There are a few places you can take the test online:

  • I took it at aspietests.org because I like the way they present the scores at the end. However, you’ll need to create an account to take the test there. (I did so about 2 weeks ago and they haven’t spammed me at all, which is nice.)
  • If you’d rather not create an account, you can find a no-personal-information-required version at Aspergian Women United.
  • There is also a paper based version of the test available but it doesn’t include a scoring key.

Wherever you decide to take the test, the format is the same. It took me about 20 minutes, but I spent a lot of time thinking about some of the questions so you may finish more quickly. You’ll be presented with 80 questions and for each you have to select one of the following:

  • True now and when I was young
  • True only now
  • True only when I was younger than 16
  • Never true

This answer format, which is unique to the RAADS-R, allows for the fact that some adults on the spectrum had symptoms as children that they no longer experience or vice versa. Having to think about these options can make the test challenging to complete, but do your best to select the most applicable option. Each of the four options has a different score value so accuracy counts on this one.

I often found that none of the four choices was exactly right because the questions tend to be phrased in an “always/never/only” format when what I really needed was a “sometimes” or “most of the time” phrasing. I also found it hard to answer some of the vaguer questions when it came to my childhood because my memories weren’t specific enough or I wasn’t a very self-aware child (which is a clue in itself, I suppose).

Scoring the Test

Each question is scored on a 4 point scale:

  • 3 if the symptom is always present (or never present for “normative” questions)
  • 2 if the symptom is only present now
  • 1 if the symptom was only present in childhood
  • 0 if the symptom was never present (or always present for “normative” questions)

If you take the test at the Aspie Tests site, you’ll receive an overall score plus 4 subscale scores. If you take it at the Aspergian Women United site, you’ll get only an overall score.

In the 2010 study, the scores for those previously diagnosed with ASD range from 44 to 227. The scores for control group members ranged from 0 to 65. The researchers set a threshold of 65, meaning that a score of 65 or greater “is consistent with a clinical diagnosis of ASD.”

It’s interesting to note that only 3% of the people with ASD had a score below 65 and 0% of the control group participants had a score of 65 or higher. There is very little overlap between the two groups, unlike the AQ study results.

In addition to an overall score, the RAADS-R provides 4 subscale scores. The creators of the test emphasize that the overall score is more accurate than any of the subscale scores alone, but the subscales are still informative if you’re curious about where your stronger/weaker areas are. The researchers also state that the RAADS-R is not intended to be administered outside of a clinical setting (such as online or by mail, both of which are valid AQ administration methods).

Here are my scores:

Overall and subscale scores from aspietests.org
Overall and subscale scores from aspietests.org (click to see a larger version)

Total score: 175

Subscales:

  • Language: 6
  • Social relatedness: 97
  • Sensory/motor: 36
  • Circumscribed interests: 36

Any of the scores that are highlighted in yellow are above the clinically identified threshold values for ASD.

The averages given in the chart above are for people who took the test at the aspietest site. They tell you how you compared against other people who identify with the same neurotype as you, but little else.

The Bottom Line

The RAADS-R uses a slightly different approach than other autism screening instruments, making its use more appropriate in a clinical setting. However, it still provides an interesting snapshot of autistic traits for those who take it informally.