Some of the people on my facebook page have requested an article explaining how autism is diagnosed in adults. So… here it is. Or at least, here’s my experience of the diagnostic process in as much detail as I can recall. (I was nineteen at the time, and had already been diagnosed as a child). Autism is a spectrum disorder. It affects everyone differently, so everyone on the spectrum will have a slightly different experience of being diagnosed. I’d love to hear about your experiences in the comments. For now, here’s my story:
My assessment for Asperger’s Syndrome took place at The Yorkshire Clinic. It consisted of several 1:1 sessions with a consultant psychiatrist and a multiple-choice questionnaire for me to fill in. Some background information was provided from my parents, and I was asked to create a timeline of what I thought were significant events in my life in terms of my autism and mental health issues. Luckily, this whole package was funded by the NHS. If my amazing mother hadn’t fought tooth and nail for this funding, I would’ve had to pay around £1000 to have the assessment done privately. For someone who (at the time) didn’t have a job, was living off a meagre student loan and bought most of their clothes second hand, this was a pretty mindboggling sum.
The first thing I remember doing was the multiple-choice questionnaire, which contained a series of statements I had to apply to myself by selecting definitely agree’ ‘slightly agree’ ‘slightly disagree’ or ‘definitely disagree’. Here are some examples:
- I prefer to do things with others rather than on my own.
- I prefer to do things the same way over and over again.
- If I try to imagine something, I ﬁnd it very easy to create a picture in my mind.
- I frequently get so strongly absorbed in one thing that I lose sight of other things.
- I often notice small sounds when others do not.
- I usually notice car number plates or similar strings of information.
- Other people frequently tell me that what I’ve said is impolite, even though I think it is polite.
The psychiatrist then read through my answers, and we discussed any results that surprised him. He knew about my childhood diagnosis of Asperger’s, which made the whole process a little frustrating, as it often felt like the psychiatrist was just looking for autism stereotypes. I remember him being particularly shocked when I circled ‘definitely agree’ for the statement ‘I engaged in imaginary play with other children during my childhood’- something I remember doing from an early age. The psychiatrist just kept repeating ‘with other children?’ and I kept repeating ‘yes’ until he’d got over the mind-blowing revelation that some people with autism do socialise, and we were able to move on to the next question.
I think this scenario illustrates both how damaging stereotypes are, and why a multiple-choice questionnaire might not be the most appropriate method for diagnosing a neurological disorder. Nothing about autism is simple, and in order to create an accurate portrait of how I socialised as a child I’d need lots more options than ‘definitely agree’ ‘slightly agree’ ‘slightly disagree’ or ‘definitely disagree’. I found the one to one sessions more useful. I got to explain that while I do enjoy socialising, it can be difficult, especially when attempting to read other peoples body language or dealing with sensory overload.
When I revealed that I’d dated girls the psychiatrist’s questions suddenly became a lot more personal. I’d mention a teenage crush, and he’d immediately inquire ‘did you think about her when you masturbated?’ I don’t think he was getting off on these questions or anything, he was just trying to determine if my autism had any effect on my sex life. Eventually I asked a friend whose Dad was a psychiatrist whether these kind of questions were normal, and he said that they were. Apparently questions about sex or masturbation are usually used to determine a patient’s developmental level.Still, given all the information I’d provided about my sensory issues, problems reading body language and my struggle to maintain friendships and romantic relationships, was knowing who I wanked over really necessary before I could be diagnosed? The whole thing was just so… uncomfortable.
A few weeks after this lengthy assessment process, I got my results back, and (as expected) I’d been diagnosed with Asperger’s Syndrome. Here’s a summary of the psychiatrist’s observations:
‘From the various tests and behaviour observation, it is apparent that Gwen meets the criteria of Asperger’s Syndrome. Gwen seems to have problems more in social interaction, imagination and information processing. She also has some narrow interests and shows sensory over reactivity, in the context of Asperger’s Syndrome, it should be noted that presentation of AS in females is different from males… There seems to be a problem with regard to Gwen’s emotion regulation. Gwen has had frustration in relationships and has had stress due to course work and her mother’s health. This resulted in self-harm and depression… Gwen will require an Asperger friendly approach which takes into account her ability to cope with stress, her processing difficulties and relationship. At an individual level Gwen will also benefit from cognitive behavioural therapy (CBT)… she would require specific support which is as follows:
– Overall sensory integration and management as it seems to affect her education and social engagement
– Counselling with regard to sexual orientation
– Self-image- she needs support in this area as it will enhance her creative potential’
Part Three of this article will be posted next week, and focuses on what happens after diagnosis (or at least, what happened to me after I was diagnosed as an adult). Any questions? Just comment below or email me at firstname.lastname@example.org