Traumatising experience of the diagnostic assessment

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Having spent years obsessively thinking and researching about Aspergers Syndrome I had a 3 hour assessment this morning through the NHS. I must say, I thought the whole process, for an intelligent adult female was awful and misguided. I left feeling humiliated, traumatised and a bit nuts. Obviously questions were geared towards the understanding of how it predominantly presents in the male gender, but some of the activities also utilized children's books and I felt spoken to like a child. Totally age inappropriate. How am I meant to have faith in this process? It seemed, despite their best intentions, they were undertrained when it comes to female adults. Anyone else had this experience? I'm in the UK and it was via the (admittedly very strained) NHS.

I I got diagnosed through the nhs, I had someone come to my house to complete the DISCO assessment once a week till it was complete and info taken from from my parents. Where you being assessed using disco too?

DISCO - I don't think so. It doesn't sound familiar. Apparently the 3 hour session with them was it really and I will return for feedback in a fortnight.

Did they make you use childrens toys and childrens picture books?

For the record, I have officially complained about my experience. I expected it to be aligned to male stereotypes but the extent to which is was age-inappropriate (and intellectually inappropriate) was a appalling. Hopefully they will develop a better system so future female service users and high functioning adults do not endure such nonsense.

I'm fifteen and recently got diagnosed - on the 3rd of March on a Tuesday.
It was age inappropriate and it was done through the NHS, they used the ADOS test where you had to fit a puzzle, tell a story with five toys and without looking at the text guess the character's emotions and the story.

Sorry to hear that LifUlfur. I would recommend registering a complaint regards the age inappropriateness so we can save other women and girls from such patronising and misguided procedures.

Sorry to hear you felt patronised by the way you spoke, however the assessment used sounds like the gold standard ADOS.

Patronised by the way I was spoken to (as though I were a child) but also by the practical tests I was asked to undertake. If it was the 'gold standard ADOS', which it sounds very likely, then it needs one hell of an overhaul! Problem is, there are too many under trained so-called professionals undertaking the diagnostic assessments. It appears to be something of a postcode lottery in terms of getting a decent doctor or team. My team, despite their best intentions, were quite ignorant really.

Here is some information on the ADOS module 4 (for verbally fluent adults) taken from this website:

http://www.hogrefe.co.uk/autism-diagnos ... -ados.html

MODULE 4: for fluent adults
Construction task
Telling a story from a book
Description of a picture
Demonstration task
Cartoons
Creating a story
Conversation
Current work/school
Social difficulties/annoyance
Break
Emotions
Daily living
Friends/marriage
Loneliness
Plans and dreams

Does this sound like what you did? I did read somewhere that the ADOS may be less effective for those at the very mildest of the spectrum. I can't find the research paper now though (need to make more of a concerted effort to use EndNote!) but I have found this one which argues that given that research requires a greater burden of proof, the mildest individuals are unlikely to be included in studies about effectiveness. But that only really shows that they don't know whether it might or might not be true.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3635090/

I was diagnosed last year based on some essays I wrote about my symptoms in childhood (I did a huge research) and my obsession with Asperger (I was researching about it for 12h/day back then).

The diagnostic assessment was fine. The therapist was reading my essays and asking additional questions. In the end she said I know more about AS than she does and I diagnosed myself correctly.

The second meeting was worse though. I come with my mom, to discuss the future strategy. I am not without fault - I was on the edge of shutdown back then because I had some upsetting experiences the day before and lacked sleep too - but it doesn't excuse her behavior. She was chatting with my mom without asking me for opinion what I want and my mom was just agreeing with her. They were treating me as if I was not there. Sure, I was asked a few questions (such as "Will you go to the therapy?" - they wanted to send me to some meetings with mentally delayed people to learn cooking) but when I said I don't want to because I hate cooking and find it extremely boring they attacked me that I should try new things and met new people instead of following my routine and interests. What the hell was that? Also - there was a fly in the room that didn't let me focus.And the therapist was telling me she is aware the fly must be very annoying to me and it pisses them off too but she is unable to do anything with it. As if. There is a multiple ways of getting rid of a fly in a room. The easiest one is opening a window - the fly usually finds its way out pretty fast.

And the worst thing is that after leaving the room my mom told me the therapist is weird and she(mom) would never let me go to such intimidating therapy. Then why to the hell did she agree with the therapist when they were discussing it and attacked me together with her when I said "no"? When I asked my mom about this behavior she couldn't explain it to me.

Hi ConceptuallyCurious, it was indeed Module 4. I'd just been scouring Google trying to find more information. Would love to read about the theory behind it. They really could really do with avoiding child picture books for starters and make a provision for how symptoms present very differently in women and girls (e.g. often imagination is not a problem at all!)

Kiriae - sounds like your mum was perhaps inhibited out of politeness/subservience to authority whilst in the room. Maybe she didn't want to offend the therapist. Agree it is annoying...fake and disconcerting. As for pushing you to do a cookery class, how tiresome to deal with misguided suggestions...

I haven't had my assessment yet, so I've been writing up notes for it. I managed to get a hold of Baron-Cohen's research Adult Asperger Assessment form which has the EQ and AQ built into it, when you fill out those forms it adds the plain speak items underneath the relevant professional jargon.

He added in his own section which says 'Inability to tell, write or generate spontaneous, unscripted or unplagiarised fiction.'

Perhaps this is what they are assessing. Otherwise it may be perspective taking and/or ability to link situations together to form a cohesive context. So, I suppose if you were out and about and you saw a few things happen, would you be able to form the social context.

Yeah, I've read a lot about Baron Cohen's diagnostic tests - they are very much aligned with male presentation of symptoms. I have to say I'm quite fond of the intense world theory. That works for me...Also, I read that that there is a link between hypermobility syndrome and autism recently. I was diagnosed with the former a few months back and there appears to be little awareness that it's a multi-system phenotype. People just think "oh, so you're double jointed/a bit bendy...so what?!" But it's based on collagen variant and collagen is found not only in joints but in the cornea, bones, dentin, gut etc. This led me to wondering whether there is a collagen/protein variant in the brain that is causing hyper-plasticity/reactivity in certain regions- meaning frequent overwhelm/high sensitivity/more processing etc. I read research that the hippocampus produces collagen V1 which lubricates neurons in order to protect them from amyloid toxicity (the build up of which causes neurogenerative diseases). I wondered if in autism the neurons are being lubricated with a collagen that aids that but also causes them to be a bit wild, a bit more flexible...

On the face of it, this doesn't make sense. Neurons receive signals through their dendrites, regulate action potentials through ionic processes and then release them through their axons to other neurons. The transmission of the action potential along the axon is facilitated by myelin and I can see that there could be some way that the myelin is protected and thus improves the signalling ability of the neuron--but this would not be "wildness" or literal flexibility--the axon needs to be in the right position to form a synapse with a receiving dendrite from another neuron. The communication across the synapse is by release (or uptake) of neurotransmitters and this won't work if the dendrite is too far from the axon.

I am only an amateur student of neurology, but my understanding is that it doesn't make sense to think of of the role of collagen in musculoskeletal flexibility as somehow involving similar processes as cognitive flexibility.

Do you have any kind of reference to that research? I would be interested in finding out more about it.

[Edited to de-garble a sentence. I knew what I meant to say!]

Last edited by Adamantium on 19 Mar 2015, 8:11 am, edited 1 time in total.

Interesting. I'm yet to study neuroscience but wanted to put it out there to see how exactly a collagen variant might effect brain activity.

http://www.alzforum.org/news/research-n ... neurons-av
http://www.nature.com/neuro/journal/v12 ... .2240.html

Thanks for the links!

If you are interested, I highly recommend the course offered by Dr. Peggy Mason of the University of Chicago through Coursera:
https://www.coursera.org/course/neurobio
There are some other good courses offered free through Coursera and EdX.