ADOS-2 assessment at Cambridge ARC

Post Reply New Topic

I've just been through an 'Autistic Diagnostic Observation Schedule - 2nd Edition - Module 4', ADOS-2 for short. I had volunteered for a 'Genetics of Mathematical Ability and Autism' study run by the the Autism Research Centre in Cambridge (UK). They had invited anyone with a degree in mathematics, with or without a clinical diagnosis of autism or Aspergers.

I have no diagnosis, having been born in 1954 long before such things were heard of. I realised about 10 years ago what the explanation was for my isolation and dysfunction in the first half of my life. I won't go into exactly why I think so in this post. In fact, I wrote a whole book on that topic, see link below.

I was invited to take an online AQ test and sent a kit for donating a saliva sample for genetic analysis. Subsequently, I was invited for a 'research assessment' in Cambridge. This was to be an interview which would last about an hour to determine whether to count me as 'autistic spectrum' or not - for research purposes.

I've given up the idea of going for a clinical diagnosis. I'd love confirmation, but at my age I don't think the NHS would be interested. I had tried to gather some preliminary evidence, but discovered my medical records do not extend far back enough (to childhood and student days), and parents and teachers are now passed away.

The Autism Research Centre wanted maths graduates both with and without autistic tendencies so I supposed whatever the result of the 'research diagnosis' the data would be of some use to them. I didn't really think this would be diagnosis by the back door. I didn't know what to expect, or how it would go. I suppose I felt an urge to talk to someone professional about Aspergers. I have talked with my wife and one or two friends but I haven't exactly 'come out' about it. My book is written under a false name.

The interviewer was very professional. Her first question was why I thought I had Aspergers. I was happy to answer that, starting with the most undeniable symptom, the delayed milestones for co-ordination including learning to walk. After that, the assessment became something quite unexpected. All the exercises seemed to be aimed at two-year-olds. The interviewer assured me this was the adult version of the test. I was asked to make up stories from pictures of frogs sitting on lily-pads and small objects pulled out of a bag. I was asked what made me happy. I suppose if questions make you very uncomfortable they're getting through your guard, making it hard to fake anything, not that I wanted to fake anything, far from it.

After the interview she made it clear that this was only a 'research assessment', that whatever the result a more thorough 'clinical assessment' which went into more detail about my childhood might give a different result. Perhaps she was preparing me not to be disappointed if the result was not what I hoped.

The results were I scored 2 for 'Communication' and 4 for 'Social Interaction'. For Communication 2 is indicative of 'Autistic Spectrum' and 3 is indicative of Autism. For Social Interaction 4-5 is indicative of Autistic Spectrum and 6 means Autism. However, my combined score was 2+4=6 (did I mention I had a maths degree?) and 7 is required for a diagnosis Autistic Spectrum. So close, but no cigar.

So how do I feel about this? On the one hand, I do not have confirmation of my self-diagnosis. On the other, if the assessment is based on the person I appear to be now, I am surprised it was so close. I like to think that these days I can 'pass for normal'.

I made the point in the interview that on tests like the AQ tests my score depends on whether I answer the questions for the person I am now, or the person I was at 30, or at 15. My AQ has decreased steadily over time. But my genes have remained the same. She seemed to take that point. It's important for the research to have enough data to sort out correlation between not just genes and test scores but also correct for the effect of age on behaviour, and therefore test scores.

I'm not clear whether the score of 6 reflects the person I am now. Were the few questions about why I thought I was on the spectrum relevant to the scoring, or were they just to get me to talk about myself? The scoring of the ADOS-2 test seems to be a guarded commercial secret on the internet. The genetic data will be anonymised, I do not expect any feedback about that.

The letter I received with the above scoring was oddly worded. I was referred to by my first name, and always in the third person, as if I was a child and the letter was to be read by my parents or carers.

I feel it was worth doing, though I can't say exactly why.

All I can say that with those results from that type of assessment I would have little trouble calling myself autistic.

Do you need or want the clinical assessment for further confirmation?

Thanks for your support.

I don't really 'need' a clinical diagnosis. I'm 63, life has already happened. I'm not trying to access welfare or services. Life has turned out well, but there were times in my youth when I considered ending it all. I needed help then, but not now.

Want? It would be greatly satisfying. But the diagnosis isn't exact science. If I could have my DNA tested or stick my head in a scanner and be given a definite answer, I would gladly pay for the test. But if the diagnosis consists of wiffly-waffly interviews I don't think it's so worth while.