Mistreated/ignored during my assessment and need some advice

It is odd how variable diagnoses are. I  filled in a very, very detailed questionnaire, then the face-to-face  assessment was mostly about my experiences and reactions to things and people, there were no overt tests at all - apart from a standard AQ test.

I had to pretend to brush my teeth. I think I shut my eyes and did it a bit half-arsed as I thought why am I doing this??

I had to put the foam shapes in a cross outline and kept fiddling with it. When the Phycologist asked me what I was doing, I said you told me to put the shapes within the black line and that it what I am trying to - of course the various shapes kept popping out of the area.

then she said what does the shape reminder you of and I said nothing in particular. She said some people saw a dagger or a plane and I said it doesn’t look like either :)

There was this weird story about a boy having a dream. She turned to the first picture with the boy in bed and asked me what happens next. I said, I don’t know, could be anything, sleep maybe? The physiologist said, you are supposed to turn the page to see what happens next and I said you never said to do that…

I also had a picture of a large family picnic and asked to comment- I never made any remarks about the family at all and picked out small details eg I said it must be in Tuscany, because of the narrow trees and the Phycologist said I was the first person to notice that.

finally I had to make up a story with some objects. I couldn’t really thing of anything and just used the objects (one being a toy car) to describe, very briefly, my trip to the session.

It all seemed a bit odd. She gave me a magazine to read, while she wrote up her observations and found out later, that this was part of the test. I just flicked through it and put it down, saying there was nothing of interest in there.

One of the things she said in my report is that she didn’t thing I enjoyed it much - I was just puzzled and perplexed for most of it ??

I have never used PALS, but here are a few fairly random thoughts!

I would start by saying you had an assessment but think the assessment was incorrect, and that you would like a second assessment if that is possible. 

Ask them about the process for making a formal complaint if that is what you want to do.

Then you can decide whether to take it any further.

Have you discussed it with doctor/psychiatrist, as they know you, and should have an opinion of the assessment?

Making a complaint could help you get what you need, and could also help them improve their service for others in the future. But it won't be completely stress free, so you need to decide if it is worth it.

Explain any communication issues you have from the start, for example absorbing information on the phone may be an issue for you, so they may need to say things again. Don't be afraid to ask them to repeat and explain anything you don't understand. 

Also try.to be flexible (I am not very good at this) there may be other outcomes, and you.might be able to get the support you need without diagnosis , or there could be an alternative diagnosis. (Another thing to discuss with medical professionals.)

I would be surprised if they need all the details of what happened on a first call,  but if they ask just give a couple of examples like you did on here, and say there is lots more. 

If the time limitations on the assessment are blamed on covid don't be put off, it was still potentially an inaccurate assessment, enter a complaint and try for a repeat assessment after covid.

Hello. Sorry sounds like a silly questions. But do yu know what I need to say to them? Or what to do, I'm really working myself up over what I need to say to them.epsically to help get a second assessment on the NHS. Thank you :) 

I had to make tea In mine , I asked why and they said it was to see how I use gestures or something like that .

Strange 

I think that many clinicians confuse social imagination with imagination in general. Anyone with a social impairment is likely to have some social imagination impairment also. As someone who, in my teens, created a whole imaginary world, with geography, religions, myths, history, laws, architecture, climates, languages, military and naval technology  etc., etc. I can say that at least one autistic has no lack of imagination.

so what are the expecting? are the expecting you to pretend your tooth brush is a lightsaber and make weird lightsaber noises while destroying the dark side of the plaque? lol

I use my imagination a lot, I have a very creative mind. Like when I read I can picture it perfectly. But what didn't make sense is they said doing that is within the criteria and then told me at the review that because I do that its not something someone with autism would do. Which one is it?? 

I was diagnosed thirty years ago, aged 12, so now I'm a Grumpy Forty-Something.

I had to do this. I think it's about how much you can use your imagination.

Thank you so much, i am definitely going to get in contact with them. Its taken me a long time to get over the situation, so finally going to take action. I want a second assessment but you can only have 1 via the NHS then you have to pay apprently. So they wasted my assessment which I'm really struggling to come to terms with. A lot of my friends are autistic and they themselves have said how much I fit and share the same charactistics as they do. But because I didn't realise a lot of these were apart of it, I never even thought. I even mentioned my friend in the follow up review and they actually said to me "I understand more as I've been doing this for so or so years". Like what the ***?

I really appreciate your advice and I'm definitely going to do something about this. Thank you!! 

and tbh id have probably said no to a routine.... but my life kinda is a routine, every day is the same, and for me to do stuff takes ages to make it into a habbit for me to actually do it and accept it... so despite me seeing i have no actual planned routine, i do infact stick to the same day every day, but i wont call it a routine as its not intentional... and thus id have said no to a routine when infact its probably a yes, but unintentional yes that i dont think about.

ah so now people with autism cant brush their teeth? lmao

jesus christ this *** list of what you cant do gets longer and more daft.

Absolutely, you should contact PALS. Your experience was awful and I'm so sorry.

heres a link to PALS, sorry they messed up 

www.nhs.uk/.../

If this was through the NHS you should contact PALS and say you think you have grounds for complaint.

You have explained here quite clearly what went wrong. Your assessment was not suitable for a person with autism! You need more time than average to explain things, not less.

Also try phoning National Autistic Soc they may be able to help.

In some psychology/psychiatry professionals there seems to be a level of lack of understanding of diagnostic criteria for autism that is frankly appalling. Do these people even glance at the official criteria, or make any effort to keep up to date? I have heard of so many instances of the bizarre use of very simplistic characteristics in a yes/no fashion to make diagnoses. In a spectrum condition, the very fact that it is a 'spectrum' precludes a simple yes/no approach to any trait. I suspect that appeals to the people who did your diagnosis would be futile. It would be best to get a referral to a different set of people entirely.

I think you need a second opinion and are entitled to one.  I'd certainly respond with a letter detailing all the items where you:

a) have been misinterpreted

b) weren't allowed to elaborate on or tell them

You might also want to chat to your GP about it.

Certainly, I don't see what brushing your teeth has to do with anything at all.  SOME people with autism don't like the noise or feel of brushing, but since when did autism make people incapable incapable of brushing!  And yes, definitely, lots of people have autism and ADHD. Are these people even specifically qualified?

If they aren't diagnosing autism, I'd want to know what the DO think the source of the problem is and I'd expect them to have an answer that made sense to me.