Traumatising experience of the diagnostic assessment

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Thanks....I'm a fan of EdX and actually signed up to their Neuroscience courses but alas, work sidetracked me. When I get time, I will dip into their archives...

I know what you mean! I got a "with distinction" certificate for that Coursera course, but I found the 4-6 hours/week to be a low estimate. I found myself needing to do all the "optional" lectures, labs and readings to get the most out of the course. I think it took about 2 hours a day on weekdays and another 8 -10 hours on the weekend. But it was a total thrill-all those good things that come from hyperfocus on a special interest were activated.

If you can carve out the time, it's really worth it.

So the mechanism described seems pretty specific to Alzheimers and the amyloid plaques associated with Alzheimers. I am not aware of an amyloid role in autism, so I don't see a pathway that connects to autism. There are some indications that maternal inflammatory illnesses and inflammatory illness in the autistic person may be connected with ASD symptoms, but I don't see a connection there, yet. Maybe one of the WP members working in this field will have more information about this.

Hi there, yes, that mechanism is. It wasn't really the amyloids that I anticipated playing a role in autism. I was hoping to open a space for the imagination and find some more dots to connect with regards collagen. It has more unknown roles than is understood it appears. For me, the fact that collagen even exists in the brain is fascinating. There is plenty of unknown space for exploration. Just because it is behaving in one such way with regards amyloids, doesn't mean it isn't impacting in other ways that are yet to be discovered hey? It's a wonder that a symptom of hypermobility syndrome is that local anaesthetic doesn't work so well for sufferers either. (Certainly helped explain why I had to endure 5 sessions of screaming whilst my dentist undertook root canal surgery - the LA just wasn't numbing me). So much to be understood.

I read last month that there may even be a saliva test emerging for autism that identifies differences in levels of protein. (Collagen obviously is a protein)... http://www.sciencedaily.com/releases/20 ... 125423.htm

Food for thought...

Oh yes, a huge amount of discovery in the offing!

That said, there doesn't seem to be a reason in this research to hypothesize about a role for collagen VI in autism. There may be a role for this or other collagens, but I just don't see a basis for this in this research. It will be interesting to see knowledge grow in this area.

[edited to add:]
It looks like a Virginia Tech researcher named Michael Fox is doing studies on collagen in autism. Maybe something will be revealed there.

Last edited by Adamantium on 19 Mar 2015, 10:12 am, edited 1 time in total.

Yep, not collagen VI but collagens/proteins generally. Apparently, there are at least 16 types of collagen, but 80 – 90% of the collagen in the body consists of types I, II, and III. It's all very interesting...

Wow. Just when I thought ASD diagnoses couldn't get any stranger. My non-diagnosis was conducted in a childhood-ASD therapy clinic with toys strewn over the floors of several rooms, little chairs and bookshelves from a grammar school. That gave me my first clue as to how things would go. If I ever choose to pursue another bite at the apple, I will ask exactly how many adult diagnoses the diagnostician has performed. Thankfully, my diagnostician treated me as her peer. That helped despite her reliance on a questionable multi-phasic questionnaire which doesn't appear to have had any reliability for ASDs.

Seriously, even I have read research studies arguing for the development of verified and reliable standardized adult ASD testing. Adults with ASDs have a life history of masking and adapting that skews any attempt to diagnose using childhood testing.

That is very interesting indeed. *Googles Michael (not J) Fox....*

Oh dear. Admittedly, I had to laugh at the image of the clinic with toys strewn over the floors and the little chairs. The absurdity of it all. And yes, important point re: life history of masking and adapting.

Just read Michael Fox's profile brief on the Virginia Tech website...

"Several studies have revealed novel roles for unconventional collagens in the organization of brain synapses and suggest that a mutation of one specific collagen may contribute to autism spectrum disorders."

http://research.vtc.vt.edu/briefs/2013/ ... -collagen/

Yeah, hehe. I was 52 when that happened. A little inappropriate and worrisome. It is almost as if the diagnostic industry sees less gain from diagnosing adults as such.

Google nice.org.uk for comprehensive guidelines for adult assessment. It is wholly inappropriate to assess adults as if they were children. Here is an excerpt from the guidelines and a link to the autism guidelines:

http://www.nice.org.uk/guidance/cg142


To aid more complex diagnosis and assessment for adults, consider using a formal assessment tool, such as:

the following tools for people who do not have a learning disability:

the Adult Asperger Assessment (AAA; includes the Autism-Spectrum Quotient [AQ] and the Empathy Quotient [EQ])[6]

the Autism Diagnostic Interview – Revised (ADI-R)[7]

the Autism Diagnostic Observation Schedule – Generic (ADOS-G)[8]

the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)[9]

the Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)[10]

the following tools in particular for people with a learning disability:

the ADOS-G

the ADI-R.

Adult Asperger Assessment (AAA)
Behavior Rating Inventory Of Executive Functioning (BRIEF-A)
Social Responsiveness Scale, Second Edition (SRS-2)

In person interview with me.
Structured Phone Interview with my sister.

Clinician has 30 years experience with ASD's with all ages and genders.

Thank you. Interesting. If I had of known of NICE I would have referenced these guidelines in my complaint letter. Ah well! Hopefully others will benefit.

If it was a psychologist usually you have to have registration which is reviewed from time to time by a professional board of psychologists who are responsible for monitoring professional standards, and the board is there to receive and investigate complaints about practice from the public who have received inappropriate treatment.

I don't know who or what you complained to before. The National Society of Autism in the UK could no doubt give you the address to lodge a complaint with the Secretary of the professional registration body. Be very factual if you do- where, what, who, when and refer to specific breaches of the NICE guidelines.

You will be helping others by doing this, if you choose to do it, as well as re-empowering yourself. I am really sorry this happened to you. I think it is shameful.

Here's a link to the regulatory body: http://www.hpc-uk.org/

Hi, thanks for the link and your kind words. I sent a detailed complaint direct to the hospital involved (via a specific complaints address I found) and cc'd my GP. They've acknowledged it and informed me that they are going to undertake a thorough investigation. The National Society of Autism helpline was my first port of call within minutes of leaving the assessment. They were sympathetic but because the diagnosis wasn't through them they weren't going to lodge the complaint and advised me to complain direct to the hospital. My best friend who is also a GP for the NHS complained too as she thought it was appalling. (I actually had two sessions in two different rooms each with 3 people in which wasn't pleasant either. A mix of psychiatrists, psychologists and a student of medicine!)