Did my autism assessment go wrong?

[Glittarain]

I recently had an autism assessment under right to choose. I feel I probably don't have it. Its more of a tick box thing because of other things.

I'm not sure if it was done in right way there was about 8 tick box forms I had to do each with around 50-90 questions each. You have to tick a box for what answer fits you. But alot of them didn't fit me but I was forced to tick something. So the answers don't show a true me. I said this to the person doing doing the assessment and she said there was several options for the answer. Which there was but they didn't fit me.

She asked me a bit about school about going from primary to secondary. How did I cope with the change I said I went to a sen school the primary and secondary were one school. I just moved rooms with the same peers we stayed in the same class for most lessons apart from things like PE but that was the same as primary the only change was the tutor teacher and I already knew her. She said ah ok then asked the question again the reason I found it hard to answer is because i wouldn't have had the big change that children in mainstream have wheh goung from primary to secondary.

She didn't ask about my learning difficulties maybe it wasn't relivent I'm not sure.

I had also written about how when i was a teenager I used to sit on the floor behinde the teachers desk and avoid everyone. When i was told to move because lesson was starting i would move my chair right back so I was away from people as much as I could be. I didn't talk for a whole school year if I was asked a question I would only ever say yes,no if it was an open question I would say don't know even if it didn't make sense. I wasn't asked about that either. Maybe it wasn't relivent either. But when I mentioned it at the end of the assessment she did have a brief shock face.

Does that seem right?

Though PP mentions a specific condition, I think the general point is there are other conditions that could be relevant. This comes back to the point I was making earlier about being forced into boxes. Most autism assessments just look for autism and don’t consider differential diagnoses (consider what other conditions may lead to similar results). For example, attachment disorders due to early childhood neglect or FASD; FASD is potentially more common in the uk than autism. There is a saying ‘when all you have is a hammer, everything looks like a nail’.

Ah ok it was the word schizoid and a couple of other word that threw me off. If theres 1 or 2 words I don't understand I loose the whole post. Its a me thing not you. I often ask chatgpt to explain a post I don't understand but I forget sometimes.

And yes other things could possibly fit like you say i end up checking the things I have heard of but not others

Yes that had me stuck to. I had would you rather go to a museum or the theater. I put theater because you sit on your seat watch the play you don't have to speak to anyone. In a museum there's more likely to be interaction.

I feel like you should be able to put none of the above or other possibly a box where you can say what other would be.

Yeah i understand in general. Like only looking at the thing we hear of most because we don't often hear about other things and the people doing the assessment are matching things to fit with autism because that's what the assessment is. But they could be other possibilities. don't know what FASD is though

I annotated my questionnaires which apparently is a very autistic thing to do 😁

Sorry FASD is foetal alcohol spectrum disorder. It is a condition caused by their mother drinking in pregnancy and exists from mild symptoms through to significant learning disability, autism-type symptoms and physical differences. No amount of alcohol is fully safe in pregnancy so this isn’t just about heavy drinking, and the mother may not have known she was pregnant at the time. However because it is the result of something their mother did it can be very difficult to talk about or for families to deal with.

This is what happened with DD1 assement - though we had a pre interview interview as well where one clearly thought questionaire was a no but talking to us they suddenly reversed that view.

It was not ASD but there were a series of interviews and indepth questions to decide that some with us there some without. She then went though ADHD assement on advice of ASD assessors - but apparently the form was again a barrier so she re-did it with her GP.

I did put in lots of qualifiying information on the form next to the boxes I was asked to fill out.

She also went through seperate assesment base on tests for dsylexia and dsypraxia which she had and we'd always thought she had.

Problem with the tick boxes is they don't allow marks. I do simlar with general forms though. Especially if I'm note sure if i have answered correctly

I think so, I have a vague memory of it.

The tick box forms are just a pre-assessment screener, not the actual assessment. They aren’t used to make any final diagnosis, just to give the assessor an idea of your needs in certain areas.

Im an autism assessor.

This doesnt seem right. You shouldn't be filling in a tick box questionnaire. That is done prior to the assessment. It should have been a clinical interview - lots of questions and exploring certain themes but very open ended. An informant interview. And an ADOS (observational interview where you do certain tasks and are asked certain questions). Were those things not done?
Sounds very shoddy to me. You are right to not trust it.

Yes quite. Theres no way this should be the actual assessment.

The autism screening questionnaire (which this sounds like) is quite infamous for being made of questions that don't really give enough context to answer them if you are autistic (eg: "Would you prefer to go to a museum or a party?" - Whose party - is it my Mum's 80th or a random one with strangers? I work in a museum, so do you mean would I rather be at work (prolly not) or does the fact I chose that as a career mean it should be a definite yes? How tired am I on the day? Is it daytime or evening?)
Being annoyed with the questions and adding lots of footnotes or saying "can't answer this" to loads is quite usual.

Don't know if its helpful but theses are the titles of the questions. Some we're shorter around 20 questions the others were higher I saw one was 73 another 80 i forgot the others.

I'm not sure if they mean anything? And the video call was like I mentioned in my op. It was an hour long.

It was with harley street right to choose.

For got to add she asked me to act out telling someone how to brush their teeth.

You don't have to have a diagnosis for PIP or DLA if that's what your getting at.

So all those are screeners. They arent the actual assessment.
During the assessment for the hour what happened? The brushing teeth question and the fact it was an hour makes me think they did an ADOS. You still need a clinical interview. ours take up to 3 hours.
In the interview, you shouldnt be filling anything out, or asked questions that are multiple choice at all. So I really dont know whats going on there.

RTC is governed by the NHS so it should be legit. They often arent though. The problem is the company will get about 1,000 from NHS for them. Whereas a private assessment is 2k. So they cut corners (which they shouldnt of course - it should be a higher standard, not lower). But yeh I think they have just done an ADOS, and questionnaire screeners (and not as many as I would want tbh).

With the interview you had what was it called?

With the ADOS, you should have been asked to do tasks like brushing your teeth, reading a picture book, describing an event, and asked questions like what it means to be a friend - things like that. Very open ended.

edited as I missed that it likely was done using ADOS

ADOS isnt essential under any method. NICE dont claim any assessment tool is essential, but ADOS is considered the gold standard.

I have my issues with it, but thats another thread.

Agree. Online is very different. If people were to answer considering online conversation on every question then I dont think it would be accurate at all. There is even a difference with talking on Mumsnet which is anonymous. I will never join any public discussion on Facebook which has my name and face to it for example. Barely get involved in group chat discussion with people i know well. The assessors should really clarify though if people are looking at this other ways. I never even considered it could be talking about online as that wouldnt make sense at all in assessing how someone manages in everyday life.

With the questions you give as examples 'Never agree' sounds like it would be the answers that fit, as you dont talk on and on, or get stuck in a loop, and dont only only have interest in talking about special interest. I know that you have reasons of 'not getting in a convo to start with' and 'dont have a special interest', but I think those questions are to identify whether you DO have those traits, so the reasons behind why you dont dont matter.

Question 32 is worded stupidly as it should be do you have difficulty stopping conversation, not difficulty with start and stop as those are 2 very different things. But it is most likely only looking at the not being able to stop from the following description. So if you answered never to all them it should be accurate.

That’s really interesting as I didn’t know this, o thought of it wasn’t DISCO it did include ADOS, thanks for putting me right!

It was called adult autism assessment
She said because I didn't have anyone to fill in the someone who knows me form they would have to have a meeting called TDN. And that she should let me know the outcome of diagnosis within a week.

She asked me about transition fron primary to secondary I explained it didn't feel like a transition because I was already in the school it was primary and secondary together. I was just going into a different room with all the same peers. The only thing different was the tutor but I knew who she was. And we stayed in the same class for lessons like at primary so I didn't experience the normal things that happen on mainstream primary going to secondary. She repeated the question but I can't even remember what i said now.

She asked me about friend ships I said theres 1 person I see about 3 times a year. But I don't really feel like its a friend. She asked how we meet. I said i would go to her house because I have the option to leave.

She asked how i communicate with my children i said mostly fine but sometimes I get spoken over but that happens with the person I see as well and I just back of.

I was asked about my sister i said we message roughly every 6 weeks or so. I'm not close.

She then asked if she or the friend could do the person who knows you form. I said no. No one knows I'm doing this. She asked me again in a different way and I said no I don't want to tell them.

At the end she asked if theres anything I wanted to add and I mentioned about the not talking for a year she had a very brief shock face. And I mentioned i didn't go to mainstream.

Then she said about the meeting and results within a week

Hmmm. Sounds like youve had a very limited clinical interview. Limited screening questionnaires, one hour of questioning and possibly an MDT discussion? I dont know what TDN is. Anyways, it is a substantially less intensive pathway than the one we offer. We wouldn't diagnose on that basis.

OP can you name the clinic that did the assessment since it was right to choose?