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
Musings of an Aspie 
Wow, really comprehensive and interesting post! I’m very surprised by the set of tests used for your assessment, it’s not at all like the tests used in the UK that I’ve researched. But it does have a big overlap with how dyspraxia and other specific learning disabilities are assessed in this country. My dyspraxia assessment 6 years ago used the full WAIS-III and a few supplementary tests for dyslexia and other SpLD traits. At the end of this my diagnosis was dyspraxia without dyslexia, I understand that in the US it would’ve been ‘Nonverbal Learning Disability’ (although this information may be out of date). I had no idea that the tests could be used for the autistic spectrum too, presumably the diagnosis is also based on the interview?
Tony Attwood says that NVLD is a processing style three quarters of people with the Asperger label fit and the UK National Autistic Society has stated that they consider it to be Asperger’s, or at least that all people who fit NVLD would count as AS, if not vice versa. The clinical psychologist who assessed me certainly implied that there wasn’t any justification for having a separate label, so it’s good to know those ‘spiky profile’ traits are being considered seriously during assessment, at least somewhere in the world! Do you know how common this is in the US?
I found getting my full cognitive profile extremely helpful to see how ‘spiky’ my range of ability is, how I’m in the 98th and 1st percentiles for different subtests and overall have strong verbal, relatively weak nonverbal, very poor working memory and low processing speed. I like the fact that you come away with something that’s purely objective and quantifiable, a proper standardised test that can be marked on a scale. It’s much less open to subjective biases from the assessor. It’s also hugely helpful to know exactly which strengths you should be working to and which weaknesses you should be compensating for. Brits don’t get anything like that when going for an autism assessment. I think it would actually be very very useful if they did and I feel lucky to have previously got this from my dyspraxia assessment.
In the UK autistic spectrum conditions are usually assessed using behavioural assessment, based heavily on the triad of impairments and the ICD-10 (equivalent to the DSM-IV) criteria. There’s various standardised diagnostic instruments for this purpose, including the DISCO, RAADS, ADI and ADOS.
I was assessed by my local NHS Asperger Service, meaning it was totally free but can after a few months wait. Specialised adult Asperger or Autistic Specturm teams are by no means standard in this country although they are best practice, I’m very lucky to live in the dozen or so cities that have one. After pre-screening with the AQ-10 and a 90 minute informal conversation a few months before, my full assessment was performed using two instruments, the Autism Diagnostic Interview–Revised and the Autism Diagnostic Observation Schedule. They’re complementary to each other and both assessed in three parts, one for each of the triad; ‘Social Communication’, ‘Social Interaction’ and ‘Restricted, Repetitive or Stereotyped Behaviours and Interests’. I’m not sure how standard this is but my Asperger Service always uses three different specialists, each with a different specialism, do the pre-screen (done by an occupational therapist in my case) and the two halves of the assessment, so every diagnosis comes with a built in second opinion.
The ADOS involves exercises like narrating a picture book, making up a story from a selection of props, completing a puzzle and having a conversation about various stock topics. The point of the tests isn’t to see if you can do them, but how you do them. They’re designed to show up rigid thinking, repetitive behaviours and ‘abnormalities’ with social communication and reciprocity. I was assessed by an Asperger’s specialist speech and language therapist for this bit, but it’s also often done by a specialist psychiatrist.
The ADI-R is a guided, structured, standardised interview about all the behavioural traits that are required for the diagnostic criteria. This involved a lot of questions about my childhood like how I played, if I used gestures, whether I was clumsy or had a speech delay, when I started reading etc, also lots about my present behaviour like how I make and manage friendships, my awareness of emotions, my repetitive behaviours and so on. The whole thing took 90 minutes to two hours. The questions are read out from a form, a bit like an exam paper, and the assessor takes notes. I tended to be so verbose in my answers that I’d end up answering multiple questions with my replies, so the assessor had to jump between lots of pages to make note of my replies. The interview’s best done with the involvement of a parent or family member. My mum wasn’t present but provided lots of background detail to me in advance that was taken into account, instead I had a close friend who’d known me for 13 years, since I was 19, who was incredibly helpful to have present, especially after I got the diagnosis when I think I’d have otherwise obsessed over whether I’d misrepresented myself.
My results were clear enough that I got a firm diagnosis on the day, which is good because it took 7 weeks before I got the assessment report. Frustratingly the report doesn’t give a breakdown of every subtest and question, what each was for and what my responses indicated. I can see why it doesn’t do that but I was very curious to know exactly what certain things, especially parts of the ADOS, were about and what my responses signified. Instead I got detailed write ups of how I demonstrated the triad of impairments for both the ADI-R and the ADOS and then a conclusion reiterating how I fit the triad, with a short list of traits for each.
Since diagnosis I’ve also had helpful post-diagnostic support meetings at the service where we’ve moved away from the pathologised, deficit-based mindset needed for diagnosis and instead looked at everything from a constructive, strengths and challenges based perspective, and talked about how I’ve adjusted to being diagnosed and what additional help, support and services I may require.
I find it very interesting how much diagnostic assessment can differ between individual clinics or specialists. I certainly know people in this country who were diagnosed only after a conversation with a psychologist, or even only by discussion with their parents (for an adult). I get the impression that my local service may be especially comprehensive. I’ll be very curious to read what everyone else’s experiences are!
Sorry, just re-read part 7 and noticed the paragraph explaining the diagnostic interview, I’d managed to forget that part and fixate on the description of your nervous behaviour switching between the two parts – sorry!
Based on the DSM criteria alone, the interview must be the ‘official’ basis for justifying the diagnosis, as AS is classified and assessed as behavioural, which is a crock given it’s quite clearly cognitive in nature and includes motor and sensory differences. I think it’s brilliant that you also got the full range of cognitive testing. I wonder how many of the test are specifically looking for co-morbid conditions rather than evidence of autism itself. Clearly the ADHD, anxiety and depression tests are co-morbidity. I’d be fascinated to know where the motor, executive functioning, central coherence and other SpLD-style tests are considered to fall – part of the spectrum or overlapping with it? Does the write up you got make matters any clearer?
I’m still not certain about what of my traits is still just dyspraxia and what gets claimed by the autistic spectrum once I’m placed on there. I’ve seen papers about ASCs that seem to claim every dyspraxia trait including clumsiness as core to autism, I’ve also seen writing on dyspraxia that claims all the nonverbal communication difficulties! I end up wondering if by the time the DSM-6 comes out whether we’ll consider autism to be something fundamentally different to today, whether purely behavioural-based classification will cease to make any make logical sense. It already seems weirdly out of place to put sensory issues in there classified as a repetitive behaviour!
Oh and it seems ironic that you aced an ADHD test by hyperfocusing, considering how hyperfocusing is considered to be a core trait of AD(H)D 🙂
No problem – I read both comments back to back. :- )
I would think in the end, the diagnosis is the psychologist’s judgment call. However, the cognitive tests were mainly focused on gauging verbal/nonverbal abilities, elements of executive processing, working memory, processing speed, planning, problem solving, etc . . . all things that figure into an autistic profile.
I know what you mean about the blurred lines between dyspraxia/ASD/NVLD. I tried writing up a post about dyspraxia and got lost in the weeds. I eventually threw up my hands and wrote about how hard it was to write about the motor skill deficits that come with ASD because the research is so murky. I need to clean up that post and publish it because it’s not going to get any better sitting around in my drafts folder. Maybe with some input from my brilliant readers, I can find another direction to go in my research.
My hope regarding DSM-6 is that the diagnostic criteria would continue moving toward physiology and away from behavioral descriptions. It amazes me that things like motor skill deficits and sleep disturbances are near universal in people on the spectrum but they don’t even get a mention in the diagnostic criteria.
“verbal/nonverbal abilities, elements of executive processing, working memory, processing speed, planning, problem solving, etc”.
It’s hard to reconcile the disconnect between lists like that and what the diagnostic criteria actually say because, barring having deficits in nonverbal communication, the other parts of that list aren’t *technically* what the autistic spectrum is supposed to be, diagnostically. In terms of actual diagnostic criteria those things would feature as core when assessing for AD(H)D, dyspraxia, NVLD or another SpLD, but not autism which is defined in terms of ‘behaviours’ only, not in terms of cognitive profiles.
HOWEVER this is clearly bunk, I’d say all the things you’ve listed there are absolutely core to the experience of being on the spectrum, along with sensory differences. The fact that the DSM and ICD still define things only in terms of behaviours and social skills, not the underlying cause or the pattern of traits and abilities that produces those behaviours, makes it clear to me that their diagnostic system is inherently flawed, if not completely broken. It must be difficult for assessors to diagnose to the letter of the DSM/ICD criteria when these don’t allow for any acknowledgment of what’s actually happening in our heads, or in the abilities we present with.
The problem is that I can’t see us moving from a model of looking at behaviours to looking at cognitive profiles because doing so would inherently redefine what autism is, possibly pushing some people off the spectrum and definitely pulling some others into it. Inherently when it comes down to it, we’re going to be stuck with a system where ‘autism’ or ‘on the spectrum’ means fitting a pattern of behaviours, and is therefore to some degree defined by the coping mechanism we adopt to work with and around our traits. If we keep the labels we currently have, the best that might happen is to see autism as being a type of SpLD and including SpLD assessment within every autism assessment – something which would look very much like your assessment did.
Moving into the realms of sheer speculation, I can imagine us moving away from specific labels into a situation where we give people only general labels and then a ‘learning plan’ or adult equivalent that outlines exactly what that person’s strengths and challenges are, and which accommodations will suit them. This is actually what seems to be becoming best practice in UK schools. Since I was diagnosed with dyspraxia 6 years ago it’s becoming increasingly common not to give children diagnoses of dyspraxia, dyslexia, dyscalculia, dysgraphia and to some degree AD(H)D, but to instead give an umbrella term label of ‘Specific Learning Differences’ or ‘SpLDs’ and then a tailored list of traits, equivalent to a cognitive profile graph, and instructions to teachers of what the child will struggle with and which accommodations are recommended. The reason for this, I’m told, is that teachers would tend to assume that dyslexia or dyspraxia were one single thing (a narrow stereotype) and all kids with that label could be treated the same, which can be counterproductive when the child doesn’t fit that teacher’s narrow expectations. The wider labels and more detailed plans stressing strengths as well as challenges are designed to encourage teachers to think of kids as individuals with unique needs.
Under this system, if I was a child now I might have been assessed and my teachers been told that I’m in the highest levels for verbal reasoning and comprehension, but my nonverbal skills are average, my reading and processing speeds are well below average, my working memory is poor and my mental arithmetic is exceptionally bad. My PE and technology teachers might have been told that I have very poor coordination and a number of other physical challenges. Perhaps ten or fifteen years down the line from now the new ‘ASD’ diagnosis might also be folded into this descriptive, personalised system and rather than kids with wildly different traits and abilities all being given the same label, which has strong and often inappropriate stereotypes associated, they’d instead have a learning plan saying things like ‘highly-detail oriented’, ‘conscientious and a perfectionist’, ‘struggles to read nonverbal communication in real time’, ‘tends towards literal interpretation of instructions’, ‘unable to intuit unwritten rules’.
Ultimately autism is a spectrum condition and we’re all different, assessing us fully with the sort of tests you were given and writing up a learning plan or list of traits and recommended accommodations based on what’s learned from them would be of benefit to everyone. One size really does not fit all.
I think even though things like executive function aren’t explicitly listed in the diagnostic criteria, they are being used to diagnose ASD. Perhaps because there’s substantial research supporting a link. My nueropsychologist talked about things like executive function in terms of the behaviors they cause, so he asked me if I get into a lot of car accidents, if I’m frequently late, if I rely heavily on lists to get things done. I think he also used the ADHD test to rule out another possible explanation for my executive function deficits, which in turn strengthened the AS diagnosis. It’s certainly not a clear science, from what I can tell.
We’re also hamstrung by the fact that the diagnostic criteria were developed in the 1940s and little about the core description of autism has changed since then, even though we have access to much more advanced scientific tools.
I’ve been finding the cognitive profile I received really helpful in thinking about strengths and weaknesses in very specific ways. Getting a cognitive profile certainly isn’t standard. I wish it were. Like you said, it would be helpful for teachers and others to have access to specific strengths and weaknesses for each student. It would also resolve the issue of trying to figure out which label(s) a kid should get, which seems far less important in the long run than having a clear set of strengths/weaknesses to work from.
But I also think that keeping the behavioral aspects of the diagnosis is crucial until there’s some sort of more “concrete” method of diagnosing. As you mentioned, there is a lot of overlap between ASD and other conditions, most of which are diagnosed using cognitive testing. For now at least, it seems like it’s behavior that clearly lands on the spectrum.
Oh yes, I absolutely think that any sensible and knowledgable assessor will take knowledge of all these things into account when determining if someone is actually autistic, regardless of what the official diagnostic criteria say. When you consider that things as absolutely core as sensory issues are only to be included for the first time in the yet to be released next edition of the DSM, and yet these things are hugely indicative of being on the spectrum and very likely to be used to allow the assessor to form their opinion. If the situation is ambiguous then they may be used for differential diagnosis (although it’s worth noting that as of the DSM-5 one can have ADHD *and* autism, so this is more like determining that the core autistic traits are there along with the SpLD traits that *can* be explained by other things), but effectively they’re made in the assessor’s head and may not make it onto paper at all if they’re using a standardised diagnostic instrument.
Before now we’ve been essentially talking about what the ‘rules’ are, and what has to officially be put on paper to justify being covered by insurance or state funding. However the actual process of assessment is effectively the assessor talking to you and deciding you’re almost certainly autistic based on how you come across, then a process of gathering enough evidence to prove that so it can be defended if challenged by other medical professionals, and so funding or services can be secured. I’m sure in the majority of cases the experienced assessor has a very strong read on things without having to ask about your childhood etc, and will base this primarily on what their understanding of autism is.
My assessment effectively came in three parts. The pre-screening for me was done by an occupational therapist who spent lots of time talking to me about my gender identity, my diet, my clumsiness, my disorganisation and strategies around it, my tendency to hyperfocus, my poor working memory, my reading speed, my difficulties structuring my time at work and my poor emotional awareness. Almost none of this came up in my formal assessment as it isn’t part of ‘the triad’, but it would all have been extremely indicative. In fact at the end of the appointment I was told that although the OT obviously couldn’t diagnose me, she’d be very surprised if I wasn’t found to be on the spectrum and she was certain that the service would be able to help me regardless of what the assessment decided. After the pre-screen the OT talks to the rest of the team to decide if the person is likely on the spectrum (if this wasn’t already clear enough to say so up front at the initial appointment) and, if so, who will do the assessment. I’m told that this decision is based on which traits were observed to be strongest, and so which assessor’s specialisms are most likely to be able to identify them convincingly.
During the ADOS part of my full assessment (which came first), I had to leave the room go to the toilet quite early on, and apparently while I was away my friend was asked “Is Nat always like this?” with the very strong implication that I was coming across as incredibly autistic and she was surprised I’d got this far in life without being identified (for reference the answer was that I was obviously very nervous and so being a little more animated and hyper than normal, but yes I was always like that). My friend was certain I was going to get easily diagnosed based on that question and the tone in which it was asked, even though there was still hours of assessment to go.
After assessment, when I was sent my report as a Word doc to proofread and give feedback on, I was told that the assessment process was ‘just a snapshot’, not meant to be comprehensive and is meant to function mainly as evidence to justify the conclusion they’d already come to, so I shouldn’t provide any new information, only fact check what had been recorded.
From the post-diagnostic support appointment onwards it was made very clear to me that the service doesn’t consider the negative, deficit-based model they’re forced to adopt for assessment to be all that useful or productive for anything other than justifying budgets, and that I should put all that behind me and look at things more in terms of strengths and challenges; a neurodiversity model.
I think you only have to read the feedback to the DSM-5 proposals and the controversy and discussion among specialists around that process to realise that assessors don’t consider what autism actually is and what the diagnostic criteria officially allows them to say it is to be the same thing. And to balance that, there have also been plenty of unjust cases where people, especially women, have been told that even though they fit all the diagnostic criteria to the letter, they’re just ‘too warm’ or ‘don’t feel autistic’ and so won’t be diagnosed. Thankfully these sorts of cases are becoming rarer (for example, the friend of mine who had that happened to 5 years ago has just this week been given a full diagnosis at last), but they also illustrate that it’s the assessor’s own opinion that ultimately decides who gets diagnosed, for good or for ill. (And that’s also why I like SpLD diagnoses – they’re so very objective, based on standardised tests that can be graphed, it’s harder for the assessor’s bias to get in the way).
I didn’t understand the justification for things like autism and ADHD being mutually exclusive. Much of the diagnostic framework feels almost arbitrary and artificial. I realize that we have to categorize and standardize things to make diagnosis possible, but perhaps some things have become too narrowly drawn in the name of refinement.
The idea of a pre-assessment is a good one. I read that some providers here offer a 1-hour appointment that can be used to recommend for or against a full assessment. The provider I went to didn’t, but I was confident enough in my research by that point to make the leap.
It’s funny that you mention your assessor implying that it was surprise that you hadn’t yet been diagnosed. About halfway through my diagnostic interview, the doc paused and looked like he was trying to phrase something delicately and then asked me how I’ve managed to run my own business. 🙂 I reeled off the long list of accommodations I’ve created for myself over the years. It was a funny moment because I think there’s a real disconnect between what we manage to pull off in life and how we look to others when we’re at our most openly autistic. It’s quite possible that another assessor–one who had some bias or was less versed in adult autism–might look at my “functioning level” and tell me that there’s no way I could be autistic, which as you mentioned, does happen. It’s good to hear that things are changing. Some of the difficulties that people have run into in the past are very discouraging.
Thankfully these days it’s been realised that exclusions for things like ADHD stop autistic people who do actually have both from being able to benefit from treatments that can actually help. I don’t believe the DSM-5 has ‘ASD’ rule out any other diagnosis, which can only be a good thing in practical terms.
Thank you. I had the advantage of being able to look back at my evaluation report, which is really comprehensive. Keep in mind that this is just one way of getting diagnosed in the US. I’ve also heard people talk about getting a “soft” diagnosis via ongoing therapy with a psychologist.
The diagnostic interview I had was probably similar to the ADI-R you describe except that the psychologist did it freeform rather than reading off the questions in any particular order. He also took a ton of notes on a regular lined yellow pad, but I noticed he was grouping his notes according to some sort of system. Sometimes he would go back and read over his notes then ask a question and write some more in a particular spot on the page that already had some notes. He seemed quite well practiced at the interview format. He did hit on all of the major traits, some very specifically and others in a round about way.
Behavioral observation played a big role as well. A good portion of my written report is behavioral notes, everything from what I was wearing to when I arrived for the appointment (early, of course) and how I presented. Some of that was hard to read, as they don’t pull any punches.
The person who did my cognitive tests is an ASD specialist and she was constantly making notes as well. I felt like how I was doing about the tests counted for as much as what answers I gave. All of the tests were administered in an interactive way, with only the ADHD test on the computer (during which time I was left alone, though I can’t say for sure that they weren’t monitoring in some way).
I have a “soft diagnosis” from an ongoing psychotherapist specializing in Cognitive therapy. For nine years I have been with him and we have discussed my Autism openly many times. We finally found a women covered by health care who has worked with one woman Aspie…So I am travelling there tomorrow to try for my papers (simply because I want it on paper too and want the tax benefits a friend gets.) I am SO nervous. I will be devastated if they say I don’t have it. Because I do. And I know it’s true…but getting someone else to believe that…esp when I can fit in so well due to nine years of therapy…well my gut is clenching.
What should I wear anyway? I am now overthinking everything and am afraid that i will misrepresent. Plus I have done the testings twice with my kids and know what each one is for and the answers…yup that is a problem. I do remember what my initial responses were in my head so I will try to go with those ( the ones I can remember ) instead of what I know is the answers. I have a very bad feeling about this.
I think the best strategy is actually to tell this person doing the evaluation exactly what you wrote here. If they can’t see through your superficial presentation to the nervousness and awkwardness underneath, then their evaluation will hold NO value anyway.
PS: good luck!
Thank you!!!:)
It’s normal to be nervous. I was terrified. Like, to the point that I stopped by the bathroom on my way to check in for my appointment, checked in and immediately said I needed to dash to the bathroom before I met the doctor. Then I broke into a cold sweat while waiting to be called into the interview room. It was one of the most anxiety inducing things I’ve ever experienced. So, remember that you’re not alone in feeling this way.
Definitely tell the person you’re seeing that you’ve been in therapy for 9 years and be specific about the ways you feel that you’ve changed. Talk about how you were before therapy and don’t be afraid to answer questions with more than a yes/no, always/sometimes/never answer. Also, try to emphasize which areas you still feel you’re impaired in. For example, the doctor who diagnosed me asked how I manage to run a business. After I told him in detail all of the EF hacks that I have and how much I’ve adapted the way things run to the way my brain works, he was able to see more clearly where I struggle with things, in spite of looking outwardly successful and competent.
Most of all, just be yourself. Wear whatever you would wear on a normal day and talk about the kinds of things you talk about here. Good luck with it! I’ll be thinking of you today. 🙂
Good grief! I feel very under-diagnosed now! I was asked to write what amounted to an essay explaining why I thought I might have Asperger’s (I didn’t, the notion that I might have Asperger’s was bought up by my daughter initially) I spent just over an hour with a psychiatrist who also interviewed my Mum and then that was it, she gave me a positive diagnosis on the spot. She wrote quite a comprehensive report to my GP which I have read which talks about rigid thinking, black and white thinking, adherence to routines and rituals and my social difficulties, so I think that she covered the basics. But still, I LOVE doing tests and I feel a bit cheated now! haha
Also, it took me two years and repeated visits to my GP and emails to the practice manager to get that diagnosis and there is no other support for me at all available here in the Midlands (UK). Surely this sort of thing should be standardized! It seems crazy that they can just pick and choose who, when and how to diagnose autism.
Don’t feel cheated! 🙂 It’s very different for each person–depending on who you see and how they prefer to diagnose, as well as what your health system is like. I’ve read quite a few accounts of people who were diagnosed via an interview or within the course of therapy, without any “formal” testing.
The long time from requesting a referral to getting a diagnosis seems to unfortunately be the norm for many adults. I don’t understand why adult autism has to be such a difficult thing to get diagnosed with. Hopefully practice will start to catch up to reality as more of us advocate for ourselves and get diagnosed.
Incidentally, some of the tests were a lot of fun.
There IS actually supposed to be some standardisation in the NHS assessment of autism in the UK, as outlined by the UK’s health regulatory body NICE. However this was only released in June 2012, so it’s going to take a while before it’s actually implemented nationwide. The assessment I had at Nottingham City Asperger Service (as documented in my comment above) happens to fit the best practice perfectly.
You can read the whole set of NICE guidelines for adult autism (in the UK the current tendency is to refer to the entire spectrum as ‘autism’, this contrasts the American tendency towards ‘ASD’) online here:
http://publications.nice.org.uk/autism-recognition-referral-diagnosis-and-management-of-adults-on-the-autism-spectrum-cg142/introduction
The relevant section for diagnostic assessment is here:
http://publications.nice.org.uk/autism-recognition-referral-diagnosis-and-management-of-adults-on-the-autism-spectrum-cg142/guidance#identification-and-assessment
In summary, the assessment should:
* Be team-based and draw on a range of professions and skills
* Involve a family member, partner or carer to give an outside perspective if possible
* Look at both past and present behaviour
* Follow the ICD diagnostic criteria but also look at other neurodevelopmental conditions (SpLD, ADHD etc), mental disorders (schizophrenia, depression, mood and anxiety disorders etc), communication difficulties, sensory differences etc (these are mentioned as ‘differential diagnoses and coexisting conditions, rather than as part of autism)
* ‘Consider’ using diagnostic instruments like the ADOS, ADI, RAADS, DISCO etc (with the implication that best practice would be to use a combination of two)
* After assessment there should also be at least one follow up appointment for post-diagnostic support
Under the Autism Act 2010, adults in England and Wales have a right to appropriate assessment, however most don’t live within the catchment area of a specialist adult autistic spectrum or Asperger team or service like those in Bristol, Liverpool, Nottingham, Sheffield etc. As such, under the NICE pathway for autism, if a particular local funding body does not provide best practice adult assessment, patients should have the right to be referred to an out of area specialist team or service with the appropriate facilities. I have a friend in Yorkshire successfully referred to Sheffield Asperger Service using this NICE guideline, and two others in greater Nottingham who successfully accessed local funding to be referred to Nottingham City Asperger Service out of catchment. In one case this involved a recommendation from a private therapist, in the others a local psychiatrist did the pre-screening before recommending referral out of area for full assessment. In all cases a degree of self-advocacy and quoting of the law and guidelines was required as unfortunately most GPs are not very aware of these issues.
Note though, this doesn’t include the sort of educational psychology, cognitive profiling tests described in the original article, to get these in the UK one has to be assessed for a specific learning difference (equivalent of US ‘learning disabilities’) like dyslexia, dyspraxia or possibly ADHD. Unfortunately it’s all but impossible to get this sort of assessment on the NHS as an adult. It’s typically given as part of further or higher education, or paid for privately like mine was. It may be possible to assess after diagnosis with an autistic spectrum condition if executive functioning or academic ability are particularly strong challenges for you (and if you’re lucky to be within the catchment area of a multidisciplinary adult autism team, or a learning disabilities (equivalent of US ‘intellectual disabilities’) department that takes on autistic patients).
It should also be noted that the Autism Act passed under the previous government with the promise to roll out best practice multidisciplinary adult autism teams nationwide, but since then the current government has reorganised the NHS in such a way that very few areas are able to consider setting up new teams and existing teams are experiencing significant budget cuts and having to ration their post-diagnostic support and services.
This looks like (at least in theory) a significant improvement over the US system, which seems hard pressed to even acknowledge that an adult might want/need to get diagnosed. Ironically, it can be easier here to get an ADHD assessment as an adult and such an assessment is more likely to be covered by insurance than an autism assessment. So strange the way these things develop in each country.
This has developed this way due to campaigning work by the UK’s National Autistic Society which has had autistic adults involved in running things and deciding policy for quite some years. This is in stark contrast to organisations like Autism Speaks in the US!
It’s nice to know that autistic adults have a hand in policy in the UK. Gives me some hope for the future here.
I got two hours and a sheet of 300 questions I took home. It was disappointing because I thought I was going to do more tests too. I love doing tests as well. I got annoyed on a few they gave me but other than that I do not think it proved much. I did some stimming but I do not see how the spelling test and the math test tested me for autism… I feel cheated as well!
I have test envy! 🙂
I was tested with many of these same tests last week, and I am surprised that for the test where I was given a letter and asked to say as many words beginning with it as possible, I was also given the letters A, S and F. My housemate has testing later this month, and I feel bad for spoiling him about the particular letters in relaying to him how embarrassed I felt when all the words I was able to think of (initially) were swear words or sex-related words. (I’m glad the student doing my testing was nonjudgmental about this.)
That’s actually really interesting. Also, suddenly I can think of a ton of words starting with those letters that are swear words and sex-related. Good thing I already took the test. 😀
My post about my testing is up now too:
http://asperoomies.com/?p=106
Thank you – this is a great summary of your testing!
This tests sound scary, especially the one with pre-algebra and calculus. How are you supposed to do calculus if you’ve never learned it? I don’t remember the first thing about algebra. In fact, I failed math classes across the board throughout grade school and college. My mom never had me tested for dyscalculia, but my teachers often begged her to get me help. She would have a fit if anyone mentioned me having a learning disability.
I appreciated reading about your journey toward an autism diagnosis, Cynthia. It helped me to know what I might expect. I’m glad it was helpful to you.
For our family, we did lots of reading about autism and got a diagnosis for my son at age 10. My husband and I (and a counselor working with our family) wondered if I had autism as well based on social deficiencies and sensory sensitivities.
I did get an adult autism evaluation scheduled through a local university. The evaluator used the Adult ADOS, an adaptive functioning questionnaire and the Beck Depression Inventory. She also interviewed me for several hours and conducting an interview with my husband over the phone. At the end of the process, the psychiatrist did not believe I met enough diagnostic criteria to warrant an autism diagnosis. She confirmed the depression diagnosis that I already have and gave some recommendations, most of which I was already aware of.
For me, giving the evaluator enough information to work with meant retelling painful and embarrassing stories from my childhood and adulthood across multiple contexts (including school, work and family life.) This exacerbated my depression during the month-long assessment/results process.
In the end, being assessed for autism didn’t result in diagnosis (and I still have to pay for the assessment.) Because so much of the process is subjective, there is the possibility that I have autism but that it is well-hidden. Some of her recommendations, like getting a sensory evaluation, still required my primary care doctor’s official referral in order to meet insurance requirements, so that felt frustrating as well.