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?

Could it be that it was cut short because she had decided i don't reach the criteria? But she couldn't confirm until the meeting has been done?;

It sounds like you're autistic, from what you've said here.
One of my friends is autustic and you seem to have very similar traits.

No definately not. You need lots of time and then you write your report, whether its a yay or no or not sure - and then you discuss your findings in MDT.

Yes there's no way I would talk in real life like i do on here. And on line removes quite alot compared to real life.

Guess I just wait and see what's said. I think possibly the report may be interesting. I am confused about the shortness of it. I guess I could question over and over I don't think I'm going to fully understand. I can't get passed the tick box things. And I'm confused why not one thing was mentioned about my learning difficulties. Maybe i just think it matters but it doesn't.

My autism assessment was very thorough.

Did they do the ADOS? For me, doing that test showed me very clearly why I’m autistic. It was very useful to see that.

They also did an IQ test to see if I have learning difficulties, which I don’t.

In the AQ test, I scored 44/50 which is high.

My scores were more than double the points needed for a diagnosis.

It should be a thorough process, not a tick box thing.

My mum was also interviewed.

The thing is, each questionnaire and assessment tool can come up with different things. So for example, the ADI-R might end up saying no, but the ADOS says yes, and vice versa. its the overal picture that is important. Also the screeners might say yes or no, but the clinical interviews are the important thing. Lots of things can present like autism/adhd. Such as OCD, anxiety, BPD, trauma etc - and vice versa. So often in our MDT sessions we are pooling everything together and looking at what all the information states and what the most likely thing is. You do need to be quite the detective - asking the right questions, in the right way, and teasing out what you need. Its not often clear cut.

I had the same issue
On my forms they got sent a few sheets of paper where Id corrected the questions that were worded wrong or did not enable me to answer ,and I answered how I felt on the separate paper .
I also gave them a long report on how the forms are male centred and did not ask enough questions regarding female issues,I can't remember what I wrote now ,but they got chapter and verse at the time ,I remember feeling very angry at the forms ,that they absolutely did not reflect me or my life ,and I told them that .
I also said it was rediculous in the assessment that the interviewer was telling me about his dog and his life and asking me stupid questions about different countries and I wasn't in a geography lesson at school ,nor was a 5 year old child interested in flying bloody frogs ...don't get me started on the feather the ball the car ect ..again I'm not bloody five years old ..I felt belittled and that I'd taken a test aimed at 5 year old boys and definitely failed it .
I was very upset after it

My 14 year old daughter is going through process at moment. I am in Scotland and I have went through a private clinic as waiting lists on nhs are huge so did not even consider that route.
Process so far has been that I had an inital hour telephone call where I discussed my daughter and at the end of that they advised that believed an in person appointment would be appropriate.
Myself and daughter then had an in person appointment (2 hours) where lots of questions where asked but no tick box. Questions that could answer and then further questions depending on answers. She asked as both. It felt like a nice chat and was not regimented. At end of that recommended full autism assessment.
I now have an appointment alone (3 hours) to discuss all her medical, childhood etc
Then daughter has an appointment alone (90 mins) for an activities based assessment
Then daughter has a further appointment alone (90 mins) with a clinical psychologist for cognitive assessment.
They will also during this time make contact with school and ask them to fill out some paperwork with regards how she presents at school.
We will then have a final 1 hour appointment where will recieve results / diagnosis.
They did say that it is very much a flowing process though and that there are often overlaps and one size does not fit all. And although at this point with original meetings it appears Autism is the most likely that other things may come up during observations such as adhd traits. Or maybe learning things. I had originally thought that she may have dyscalculia but they have advised to not book seperate testing at this point. As the process will look at her learning during tests and if they feel that an indepth test / diagnosis is required they can re-valuate during process.

Im sorry you were upset, but we are askign those questions because that is the way to get that information. Sometimes the actual questions or what we are talking about is irrelevant - its your reactions.
So for example, there is a part where we are trying to measure social recipriocity. So I have a colourful australian visual map with australian animals on it, and I start talking about oz, and that i lived there, and then I leave silence. You can give four prompts before the person scores zero for that section. So they build the questions up, and I can get no questions about me, and thent he last is 'something really amazing happened when I went to this part' - so it escalates, and we are trying to see how back and forth the person can hold a conversation. That is what your assessor was doing there. The flying frogs is an adult picture book, and there is no right answer - because its trying to see what your descriptive skills are like, and a bunch of other things. All the things you are describing are there for a reason. It may feel childish, silly, pointless, but there really is a purpose behind it all and it actually sounds like the assessor was well trained here because you weren't actually aware of being 'tested' (which we dont want).

Personally I give a little speech at the beginning to say it will feel like a conversation, and being asked to do what feel like silly childish things - nothing taxing quite the opposite - but there is a point to it. I think that helps.

That sounds so bad was you able to to retake it ?:

This seems like a highly detailed, thorough, appropriate assessment.

My 16 Yr DS recently went through the assessment. We had a VERY long monologue from the assessor at the start of one online session about her son, who is ADHD, his education, his qualifications, his work, his medication, etc.

It was only afterwards that I realised she was using that to carefully watch him and see that he was switching off during it. (I was struggling a bit too.) Maladaptive Daydreaming I think? He was sat next to me and seemed fairly well engaged, but she could see it from the other side of the screen. She was also late to the meeting, which I'm not sure was also part of the assessment.

I remember the tick boxes and that so many questions from the screening/ childhood discussion were entirely irrelevant to my DS. I almost felt like a fraud as we answered No/ Never to so many childhood questions. He was diagnosed Autistic with ADHD.

OP. I hope your result is helpful to you. I think you are likely to get the correct result despite your worries about the tick boxes. You would have presented yourself accurately if this post is anything to go by.

My DD1 (17) went through the assessment earlier this year and was diagnosed as autustic. The forms we filled in and the online interview were very thorough. But yes, full of this type of question.

I don't know i think a couple of posters on here mentioned it sounds like a ADOS test I could have misunderstood though. I didn't get anything from it. I don't think i understand it. Its good you got alot from it though i would love to know my IQ just out of interest

@seanconneryseyebrow do you know why I would have had to do a tick box on ADHD although it was an autism assessment? It wasn't many questions though.

Yup thats what she was doing. I find it interesting she chose that, because what you dont want to do is accidentally stumble across the persons special interest. And in my experience many autistic people (myself included) have autism as their special interest, so that could have sparked him off accidentally. Admittedly mine (australian animals) could too but less likely and if I thought it was going that way I would change it up quickly.

I also purposely finish the picture book early (I do two), just to see the reaction. It gives good information. Some people get visibly distressed. I end up apologising afterwards as it can feel a bit mean, but there is a lot throughout that Im trying to ascertain that would not be clear to the patient.

Dont feel bad about answering no to a lot of things. We see that all the time. Often the ADI-R has a negative result compared to the other assessments - purely because people are so good at masking, even to their parents.

Because there is a link with autism and ADHD (and other conditions). So they are trying to see if its worth recommending an ADHD assessment too.

Oh I see thank you.

Well when I got my report it did explain all that ..but at the time I was in an assessment..so I stayed silent when he started on about new York his dog and his life ,I just let him talk and waited until he asked me a question about the assessment to talk .
I can do conversation very well ,but if he wanted a conversation he should of said that ,and not called it an assessment..one minute he's asking me questions to assess me ,the next he's talking to me like a friend and expecting me to respond..I was to nervous to switch from one to the other ,plus it didn't occur to me to answer him ,as he didn't ask me an actual question .
So had he of called the assessment a conversation..from the start ,I would of understood what was expected of me ,and understood a response was necessary , because I am aware I have a tendency to remain silent,or answer in my head ,so I would of made sure to answer

Did you get a diagnosis of autism?
I know it sounds horrible but we dont want you comfortable, we have a really short window and we need to gather a lot of info in a short amount of time - the questions have been designed over years and years of testing, and there is a lot of training and experience that goes into being able to administer it. We need to see you when you feel nervous/anxious/uncomfortable - because thats real life.

Unfortunately there has been rapid commercialisation of the assessment process due to an explosion in people seeking diagnosis later in life (quite why is another topic so i will park it) and thus the nhs uses the private sector who have an interest in getting as many customers as possible and diagnosing them as cheaply as possible even though these short cuts may mean over diagnosis (private companies have a vested interest in happy customers), incorrect diagnosis (diagnosis of autism when it’s actually a more complex mental health issue) etc etc. My dc’s diagnosis involved a paediatric psychiatrist assessment for 50 minutes, questionnaire from me, reports from her school and 2 out of school activities, her medical records from before (she already had an autism diagnosis from overseas), and 2 sessions with a specialist nurse then we returned 2 weeks later for a further 30 minutes … not a cheap process.

Diagnosis later in life is always going to be complicated because we can subconsciously learn what boxes to use etc, reports from childhood are not always available and can be misremembered by parents. Also as hinted above, my gp friend says every gets a diagnosis if they want one anyway, the companies just want their fees.

The company gets their fee for doing the assessment not for giving a diagnosis so the result is not a factor.

Interesting someone clever enough to be GP presents as so ignorant. Oh well.

I was in tears at one point and trying not to show it , because I was trying hard to be able to do / complete what he asked ,and I just felt like I was continually failing..he asked me can I describe happy and I said of course I can in an annoyed tone of voice , because I thought..another stupid question for a 5 year old ...then he actually asked to describe happy ..and I couldn't..I' said i know what it means ..and he kept pushing me to describe it ,and I got upset because I couldn't find any words to describe it ...how can someone know what a word means ,but not be a be able to tell someone else what it means ..I literally felt like a failure as I couldn't do a lot of what he asked ..I knew I was making a mess of everything..I knew I was getting a diagnosis of autism after the assessment because I knew I'd made a mess of it ..
I had originally gone to my doctor to ask to be assessed for bipolar , because I was certain I had that and ( as my doctor knew I was really struggling) my doctor said I could be assessed for bipolar,if an assessment for ADHD and autism came back negative...so i really tried very hard in the autism test to get everything right

Yeh thats nonsense. We dont give a diagnosis all the time. Or sometimes we give an alternative one. Recently we did a combined (Autism and ADHD), and it was neither and we diagnosed PTSD. It was childhood trauma. She also developed OCD but we recommended a further assessment for that as we didnt have enough info for diagnosis. We did for PTSD though.

So I dont agree with that at all. We make it crystal clear at the beginning that they are paying for an assessment NOT a diagnosis. We all have professional registrations which we would never risk jsut to keep clients happy.

We have unhappy clients all the time. Its just part of the job.