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?

I think you need some neurodiversity counselling now because you have a very negative view of yourself and of autism. You didn't 'fail', you arent broken. Autism doesnt mean there is something wrong with you. You are just wired differently. Autism comes with its gifts and challenges and its different for each person. Im really sorry you feel like that about yourself. Did you share this with the practitioner at your diagnostic appointment?

What we always hope happens is the person feels a relief from the diagnosis, and its the beginning of them understanding themselves, and what they need to thrive. I hope the report was neuro-affirming, and didn't talk about 'deficits' and 'disorder', because that is archaic and not best practice.

We had the phone call after the report,and he asked me if I had any questions..and I said ..no ..I just needed to know if I had it or not ..
He said ..well you do and you scored very highly..I said ok ..he said do you have any more questions and I said no ..
That was it really ..phone call lasted about a minute
But I'm not great at back and forth ..and I wasn't really sure of the purpose of the phone call.
Both my boys have autism they were diagnosed before me
I'm genuinely positive about autism for their sake
I just did want a diagnosis because I knew there was no medication for it and I felt very strongly I needed medication..
Then 3 years later I was diagnosed with ADHD and I'm on ritalin now ..which has massively helped me ..and all the problems I was having that I thought was autism,have gone since I started ritalin ..but how was I to know what was ADHD and what was autism? It's hard to unpick problems and work out what's what .without my ADHD diagnosis I just kept getting put on one antidepressant after another and they all just made me ill ,I couldn't tolerate them

Didn't not did

My ds was seen by paediatrician twice I think and had the ados test. And he was diagnosed with autism. There was long gaps through I think to see if he catches up. There wasn't anything about after school clubs or anything like that DS didn't go to any.

I think people having a diagnosis in later life do it for different reasons personal to them.

Im really sorry to hear this. Im really pleased you finally got the ADHD diagnosis and the right medication that is helping you though. Sounds like you've had quite the journey.

We never give the diagnosis over the phone for this reason. We provide it on email, let them digest for a few days or a week, then have an hour long post-dx support session to talk through it all. Think thats so important. Im sorry you didn't have that. It may have helped. Maybe not.

Thanks, it was interesting for me but I felt some mild panic during the assessments answering "No" to so many questions as we were sacrificing a lot to pay privately. Time was of the essence to us at 15/16, GCSEs looming and school had no suspicions.

He is very academic (doing A level Maths, Biology and Chemistry now) and had masked successfully until teens, when it got harder and school just punished him instead of considering SEN.

The private diagnosis report (to NICE standards and accepted by NHS GP) included a recommendation for word processor in exams (hypermobility observation/ suspicion recorded in the report as the likely reason for poor handwriting) and a smaller room rather than the main hall, which made the world of difference and financial sacrifice worthwhile. For example, he went from a predicted 5 in English Language to a 9 achieved!

I wonder if I have autistic traits. I don't think it's enough for a diagnosis, but wonder if my dad (in his 80s) is Autistic. Out of his 6 grandchildren, 2 are diagnosed Autistic ADHD (with SEN on both sides of their parents' wider family), 2 are suspected Autistic (but their parents are following their GP's advice to not pursue a diagnosis as they are "coping well"), and 2 are NT.

My husband I am quite sure has ADHD, although he won't test now. He's already medicated for a sleep disorder and PTSD from being a military veteran, so sees no value. My other 2 children I'm confident are NT.

Again, wishing OP a result she is comfortable with. Sorry for sidetracking 💐.

You’re looking at this all wrong. It’s not pass/fail on autism there’s no right and wrong. If you are autistic your brain is just wired in a different way to allistic people And the test is designed to show the things you find difficult as a person with autism. If you couldn’t do certain things have you considered that it’s because you’re actually autistic and that your feelings of difference and the world not being designed for you are because you’re not allistic?

What do people find to talk about for an hour on the phone , everything was explained in the report.
At the time I was disappointed I had a diagnosis, because I knew it meant I wouldn't get my assessment for bipolar,which felt really unfair,as I was sure I had that and I wanted it to be bipolar, because I knew there was medication for bipolar and none for autism..I was doing constant e consults because I couldn't cope with the mood swings ..I was getting worried I was going to be struck of from my doctors I was doing that many .
So there was nothing more to be said about the report,
Obviously though I don't have bipolar, because the ritalin has totally stopped the mood drops and completely calmed me down .
So all's well that ends well

I know .really I do ..but as I explained in other messages,I was really wanting to not have a diagnosis of autism,I was trying so hard to do everything right and getting upset when I couldn't

Ah that makes sense, I can understand wanting the diagnosis that appears to be more ‘treatable’.

Well it will be based on the answers you gave to those questions.

It would be impossible for them to somehow manage to fully capture someone's total personality and the 'true them' in any questionnaire. People are too complex for that.

But that's why they have these set things they use to measure it.

The questions where you feel it wasn't relevant at all, could you give an example? And an example as to why you couldn't answer it?

Like if it really is not relevant was there an N/A or don't know option? Or just give it the score in the middle? If something is neutral due to lack of knowledge/experience?

Either way it's done now. If it's accredited medically as an official diagnosis I guess you just accept the outcome. It doesn't mean you have to tell anyone, nor do anything differently. If you don't want to.

Often people have lots of questions about the results (our reports are very detailed), and we also talk about not just the diagnosis, but where their strengths and challenges are, what would help, what support they may need going forward.
Sometimes they just need to grieve a little, deal with the shock, sometimes they are relieved - it can turn into a bit of a counselling session. It sounds like you would have benefited from that tbh.

Maybe ,but he just asked if I had any questions and I didn't.. conversation verbally doesn't come easy to me ,I'm better over email ,or if I'm actually asked questions...but him saying do I have any questions,I automatically say no , because I wasn't sure what was expected of me ,and I didn't want to hold him up ..I definitely didn't get the feeling that was supposed to be an hour's discussion to benefit me .had he of made that clear in advance I probably could of asked some questions ,or had some written down in advance.
Generally I do need things to be very clearly explained

Yes that makes sense. We say when we send the report to prepare for the session and give a list of things you might want to ask about, and to prepare, and we also say people can email as and when they have a question. I think the latter is really important because Im like you. I cant ask all in one go - i get super drained. But i have moments where I want to ask things; so ive always told clients to just send me emails as and when they feel like it over the following weeks and I dont mind how many. Thats how I roll though so I get that others need that, and some others come prepared with a folder of questions and its we go over the hour too, or we need another follow up. We are all difffernet hey.

Anyway, the positive is you got the correct diagnosis in the end and the medication. Thats really great. I hope you are a lot happier now.

You sound really great
I definitely wasn't told I could email him at a later date .
I don't know ..it is what it is
He certainly couldn't make things better or make me feel better.and he certainly couldn't of told me there was a fantastic new medicine on the horizon that was going to magic away every thing I struggle with .
It's just about getting on with life really and remembering the diagnosis is a signpost not a label..well that's what I tell my kids anyway

You might have done an IQ test as part of the testing. Was any part of it a form that had weird questions like this:

"If all groks are quacks and all quacks are locks, are all locks groks?"

Or series of patterns or shapes, and then you had to choose which pattern/shape came next in the series? Those are usually things you get in an IQ test.

Where I live (Germany) they tend to include IQ testing in an ADHD assessment, but I don't think it's part of the autism testing. DS2 did both ADHD and autism testing but they could not actually score the autism one because they said he was too distracted, kept wanting to speak English and then refused to do some of the tasks. They only explained this to me a year later, though. At the first follow-up appointment, they told me that he didn't present as autistic because he made eye contact and knew a lot of emotion words, which I found really strange as an explanation.

I think for the three questions you screenshot, the expected answer if they don't feel relevant to you at all is "never" - this should have been explained to you.

However, please don't worry if you felt the questions were confusing or gave a misleading response or that you answered them "wrong". It's not really possible to answer the questions wrong. These questionnaires are often worded in a confusing way, but the questions are not chosen randomly. When researchers are deciding how to put together a questionnaire, they often start with much longer lists of questions and then big groups of people who are already known to have a condition (or not) and then they look at which questions are most likely to come out with different answers based on whether or not the person is autistic, ADHD, OCD or whatever the screener is looking for. Diagnosis is never done only on a questionnaire, but the questionnaire can give an overall picture which can help back up observations in an interview type part of the assessment, it's not always about the literal answers to each question on its own, if that makes sense? It can be more that people who are autistic show one pattern of responses and people who are not autistic are more likely to show a different pattern. It doesn't mean that everybody who is autistic prefers to go to a library and everybody who is not autistic prefers to go to a party, or whatever the pair of places was.

Well, that's positive. You must state again what you have said here. Hopefully, the meeting will flesh things out properly.

I would never do IQ testing. Traditional IQ testing has been heavily criticised for its limitations, particularly in relation to Autism and ADHD, language differences, socio/economic difference, etc. Way too narrow. Neurodivergent people often have spiky profiles, meaning a single IQ score would be useless and also misleading/damaging.
Its not the done thing here thank goodness.

I won't be at the meeting. Its just waiting really

No i definitely didn't do an iq test. i don't think never fits because then I'm indicating there's no issue there when there could be.

That is exactly why it is done in Germany - they look for the different scoring in the different sections as apparently there is a pattern which is thought to be consistent with ADHD.

However like every other aspect of a full assessment, it's not the only or defining feature - they look at all the different measures together and see how the picture looks.

I am aware of the criticisms of IQ tests, it was more OP wanted to know what hers would be.

My son and BiL (both autistic) absolutely hate, hate, hate any of those tick box questionnaires because they say the options are never precise enough and the context surrounding each choice is never clear enough to allow them to select the option that best expresses how they feel. The imprecision is like sandpaper to their souls.

I think mine would probably be low

It's no reflection on anything, other than how good you are at doing those sorts of puzzles. I am quite good at those word puzzles, but I am totally uncoordinated and hopeless at any kind of sport or physical thing. We all have our strengths and weaknesses.

Exactly. They are no measure of intelligence whatsoever. My adult DD is one of the most intelligent people I know (and by that I mean curious and interesting, and the most excellent researcher). She had an IQ test at 7 against my knowledge or permission ( i was furious) - which said she was 62 which is 'intellectually impaired'. Absolute rubbish. She self-taught herself animation and when I got her a specialist tutor at 11 they said they couldn't teach her anything because she was degree level. So yeh, they are bollocks.
I, on the otherhand, have a stonkingly high IQ, yet I can't park, and get lost in shopping centres and absolutely cannot read a map - its like its in a different language.
Intelligence cannot be measured by an assessment and its completely subjective in my view.