Those seeking Asperger's/Autism Assessment - Social Anxiety Forum
 
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post #1 of 7 (permalink) Old 01-04-2012, 05:41 AM Thread Starter
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Those seeking Asperger's/Autism Assessment


Here's some information on assessment and some of the instruments you might encounter (or have already encountered online).

If you're an adult suspected of being at the high functioning end of the autism spectrum, such as possibly fitting Asperger's syndrome (AS), there are various problems that can occur when seeking diagnosis.

Choosing a specialist

Diagnosis is still very childcentric and the gold standard instruments, which were developed largely for classic autism, haven't been properly validated for adults with AS. Therefore, it's important to seek not only a specialist in autism (general psychiatrists and therapists are usually unequiped), but someone with experience in adult AS who understands and is honest about the use of instruments and how adults can present during interview.

Clinicians have found many adults with AS can appear relatively normal in structured conditions such as assessments. This is particularly the case for women. This could be the result of compensatory learning over a lifetime. It's only in the more complex environment of everyday life and through examining their developmental histories and self-reports that their disabilities might be apparent.

Before you agree to attend an assessment, ask a list of questions about the diagnostic process and their experience with adult AS in particular. Be aware of hidden agendas - for instance some clinics are focused more on research than patient care. If there's a heavy focus on genetic research it's possible they want to exclude many patients with milder AS to obtain more homogeneous research samples (that is, excluding the broader spectrum, which has become too heterogeneous for such research). They're likely to be making use of the ADI-R and ADOS instruments. These were developed largely for classic autism and exclude many adults with AS (I'll detail some research on this later). They're quoted as the gold standard instruments for assessing ASDs, but many professionals won't admit (or maybe are unaware of) their inadequacy for adult AS. There are still no comparable gold standard instruments for AS despite a deep need.

Preparation

Assessment can involve a battery of neuropsychological tests in conjunction with structured interviews. It can take several hours and sometimes more than a day. In some cases it only involves interviews and filling out questionnaires. Many clinicians require you bring childhood informants (usually parents) to be interviewed about your developmental history. Many adults for various reasons can't provide them. Some places will agree to assess you anyway, but make sure they'll be able to provide a diagnosis. There have been cases where patients were told the assessors could work around lack of childhood informants, but at the assessment they discovered the assessors wouldn't provide an actual diagnosis without them.

In preparation for assessment, list examples of your symptoms under each of the diagnostic criteria. Consider your entire development. It helps them assess you. Criteria can be found online. They usually use the DSM-IV (or almost identical ICD-10 in the UK) and sometimes the Gillberg criteria.

For questions based on the DSM-IV appropriate for adulthood, check out the Cambridge AAA instrument from here. Be aware it's not an established instrument and some criteria (mainly the imagination criteria) are only tentatively included.

In addition bring along your results for the AQ screening questionnaire, although they often administer this before or during assessment. The AQ and EQ are more discriminant than other questionnaires such as the SQ and the Reading the Mind in the Eyes test, which have greater overlaps with control groups.

There are also childhood questionnaires, scales and checklists online to cover your early development. If your parents can't attend the assessment or be interviewed by telephone you can obtain developmental information from them in this way. If they're completely unavailable (such as deceased or estranged) try to obtain records such as old school reports, medical records and home videos, or speak to others who knew you well in childhood.

Assessment

In addition to interviews and questionnaires on autism (and perhaps neuropsych tests including IQ), they should also give you a psychiatric interview and questionnaires to help with differential diagnosis and diagnosing comorbid conditions. Common comorbids are depression, anxiety (including a lot of social phobia symptoms in high functioning populations), OCD, ADHD, and personality disorders. Psychosis isn't too uncommon but some clinicians will rule out a diagnosis if you've had such an episode. Some will also adhere strictly to the other DSM-IV exclusion criteria and see clinically significant social phobia or ADHD symptoms as part of your autism, which is unhelpful because your treatment needs are more likely to be overlooked.

Diagnosis shouldn't be based on any one instrument, including the gold standard ones. If you're interviewed with the ADI-R and ADOS-G and are high-functioning, you're quite likely to not meet the threshold for ASD (see this recent Cambridge study). In the study, they took a group of adults with AS/high functioning autism. From that group, they found only about 64% met full ADI-R criteria, consistent with other studies (remember these intruments weren't developed for AS). They took this group (and those who'd only missed the ADI-R threshold by one point in one domain) and also administered the ADOS module 4 (which is for verbal adults). They found only 40% of the group reached the threshold for ASD. It was particularly poor at detecting ASD in high functioning women - only about 21% of the women who had AS/HFA met the cutoff. They suggest autistic women are more likely to compensate during adulthood and appear more socially typical - their ADI-R scores however (which cover early development) didn't differ from the males'.

The assessment should conclude with their diagnostic opinion and recommendations. Good clinicians will allow open discussion of both. If they don't or you have major concerns with their assessment or written report, be sure to address this to them in writing. This helps with quality control and leaves a papertrail.

This covers the basics. I might make further posts on features found more in AS than classic autism. I might also go into more detail on the screening questionnaires.
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post #2 of 7 (permalink) Old 01-04-2012, 08:07 AM
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Quote:
Originally Posted by odd_one_out View Post
I might make further posts on features found more in AS than classic autism. I might also go into more detail on the screening questionnaires.
This would be very useful.
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post #3 of 7 (permalink) Old 01-05-2012, 05:41 AM Thread Starter
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First, screening questionnaires (links to them are in the original post). I'll outline the basics. Ask questions if necessary.

The Autism Spectrum Quotient (AQ)

This is the main one. It's used to measure the degree of autistic traits in adults of average and above intelligence, including in the general population. People with social anxiety or OCD have elevated scores on this, generally in between controls and those with AS/HFA.

The main studies are here and here, and there are others. 80% of adults with AS/HFA scored 32 or above, whereas only 2% of controls did. They recommend those with elevated scores of about 26 or above and troubling symptoms should consider an ASD assessment.


The Empathy Quotient (EQ)

This can be read about here and here. Empathy allows us to tune into another's thoughts and feelings and understand their intentions and predict behaviour. It also produces a corresponding emotion in the observer. It's a multifaceted construct and certain patterns of impairment are found in other psychiatric groups (such as a specific emotional empathy impairment in psychopathy).

81% of adults with AS/HFA scored 30 or less, whereas only 12% of controls did. Scores might be reduced if you're depressed for instance.


The Systemising Quotient (SQ)

This measures the drive to understand the rules governing the behaviours of systems and the drive to construct them.

The studies are here, here, and here (the latter ones are in combination with the EQ).

Adults with AS/HFA have a mean SQ-R score of 77.2 (standard deviation 23.8 ). Adult control males have a mean score of 61.2 (standard dev. 19.2). Adult control females have a mean score of 51.7 (standard dev. 19.2). There are large overlaps.

On the testing page (and explained in detail in the 2nd study above) you can determine to what extent you have an empathising and systemising style. Most people are quite balanced. More individuals with AS/HFA have the extreme S brain type.


Reading the Mind in the Eyes test

This is another test with large overlaps with control groups. See study here (and others). (This test was also used on psychopaths here and their overall score didn't significantly differ from the control group score, indicating no theory of mind impairments.)

The 15 AS/HFA male adults scored a mean of 21.9 (standard deviation 6.6). The general population controls scored a mean of 26.2 (standard dev. 3.6), and the IQ matched controls scored a mean of 30.9 (standard dev. 3.0).

In the psychopath study, the mean score was 23.9 (standard dev 5.3) and the mean score for the control group was 26.3 (standard dev 4.3).


It's also worth looking up the Reading the Mind in Film test (see the Cambridge Autism Research Centre test page to download it). This is much better at simulating real life where you have to integrate multimodal cues. Those with AS who score normally on simpler cue reading tests are likely to score low on this. It's thought to be due to underconnectivity in the autistic brain, making them poorer than controls at integrating socioemotional information. It also discriminates well, apparently placing over 90% of participants in their correct groups (either AS/HFA or control) based on their score alone. There are several other tests using film rather than static images, though not available online. In general they are much better at detecting social cognition deficits in intelligent AS adults than static or single mode cue tests.


Plots showing the overlaps between those with AS/HFA and control groups can be seen for each instrument below (taken from the above papers). The spread in the AS/HFA group for reading eyes indicates a larger spectrum of ability than controls. To enable visual comparison, I overplotted this in red onto the published plot for the general population and student control groups. This isn't the entire AS/HFA range, though, but just the standard deviation (about 68% of the sample who are closest to the AS/HFA average, assuming a normal distribution).

AQ

S. Baron-Cohen, S. Wheelwright, R. Skinner, J. Martin and E. Clubley, (2001) The Autism Spectrum Quotient (AQ) : Evidence from Asperger Syndrome/High Functioning Autism, Males and Females, Scientists and Mathematicians Journal of Autism and Developmental Disorders 31:5-17

EQ

S. Baron-Cohen and S. Wheelwright, (2004) The Empathy Quotient (EQ). An investigation of adults with Asperger Syndrome or High Functioning Autism, and normal sex differences Journal of Autism and Developmental Disorders 34:163-175

SQ

S. Wheelwright, S. Baron-Cohen, N. Goldenfeld, J. Delaney, D. Fine, R. Smith, L. Weil and A. Wakabayashi, (2006) Predicting Autism Spectrum Quotient (AQ) from the Systemizing Quotient-Revised (SQ-R) and Empathy Quotient (EQ) Brain Research 1079:47-56

Mind in Eyes test

S. Baron-Cohen, S. Wheelwright and J. Hill, (2001) The 'Reading the mind in the eyes' test revised version: A study with normal adults, and adults with Asperger Syndrome or High-Functioning autism Journal of Child Psychology and Psychiatry 42:241-252
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post #4 of 7 (permalink) Old 01-05-2012, 04:06 PM
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This is all very helpful, thank you. I have an initial assessment on the 12th so I'm trying to prepare for it.

F***ing awesome.
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post #5 of 7 (permalink) Old 01-08-2012, 06:50 AM Thread Starter
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^ Good. I've an acquaintance in the autism field I wrote to this weekend who says professionals too often rely on instrument scores despite being taught they can't replace clinical expertise, and also agreed diagnosis for research is stricter, to obtain homogeneous samples.

A few years back when I was searching for professionals, I emailed a list of questions to one clinic. They were charging much more than similar professionals and also told me the ADOS gives a definite yes or no answer as to whether someone's on the spectrum. I didn't touch them as a result. It's part of basic training to know instruments can't give definite answers. It shows a poor understanding not only of ASDs and such conditions but of science in general.

My acquaintance also said those who work with children are less likely to understand ASDs in terms of the underlying cognitions and psychology (since children can't understand or convey well what's going on internally), and see ASD mostly in terms of behavioural expression. As a result they can have rigid views about ASD and can fail to spot its various manifestations, especially in adults and females.


ETA - New topic. Here's a summary of all the research I have on SAD and high functioning ASD comparison.


Be aware the following are general rather than absolute findings for each group. People in any particular group won't fit all its characteristics - they're both diverse groups and also the overlaps between them are obviously large. No one symptom in someone can determine which diagnosis they have. For instance not all with high functioning ASD will show a deficit in emotion recognition tasks - their social deficits are more likely to show up on complex tasks such as video ones that closely mimic real life. And not all with SAD will have social cognition deficits in real life or elevated AQ scores.

Much of the evidence is still uncertain or preliminary. Little has been studied of this significant overlap.







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post #6 of 7 (permalink) Old 02-23-2015, 05:28 PM
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To put it simply, to the neurotypical, the person with ASD looks quirky while the person with SA looks extremely timid.

People with ASD cannot socialize because they don't know how to. People with SA cannot socialize out of fear.

People with ASD cannot tell their social mistakes. People with SA are hyper-aware of their own mistakes and ruminate over it for months.

They may be comorbid.
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post #7 of 7 (permalink) Old 02-24-2015, 11:17 PM
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Here is my experience living with both Asperger's and SAD https://1icepop234.wordpress.com/
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