Adult ASD assessment procedure.

[tellmesomethingtrue]

Has anyone gone through an adult neurodiversity assessment process without an ‘informant’? I genuinely haven’t got anyone who knows me from my childhood that can do the second ‘interview’ with me.

I did, my mum "doesn't believe in autism" (although I'm pretty sure she's autistic herself) & my dad is not very involved.

I took DH instead & his insights were very helpful for the assessment (although it helped that we've known each other since our teens). He was able to answer some questions in more depth (for example, I don't tend to think of myself as having rigid routines, but he pointed out that I have specific playlists for certain activities such as showering & driving, & my strong cutlery preferences). He also mentioned some key things (such as childhood horse obsession & adult special interest in dogs) that I hadn't, as I was so focused on answering the questions and they didn't really come up.

I did because my options were my elderly dad who wouldn’t believe and be likely to lie for a joke or not remember most of it. My sister who would see it as a weakness to use against me . And my oldest friend who when I told her I thought I might be autistic said she had never seen any signs. It just meant I was asked all parts myself. I was diagnosed, I told my friend who said she had alway suspected it!! I haven’t told my dad or sister.

Aw thank you for your replies. The criteria says you need someone who’s known you since a child. My Mum doesn’t ‘believe’ and my Dad, who is probably autistic himself would be too shy plus they both say they can’t ever remember anything about mine and my sisters childhoods. My ex husband has known since I was 19 but would probably use it against me so I’m not involving him. My oldest and closest friends, I don’t see very often and I would always mask anyway. I’ve had a look at the questions for the informant and just think there’s no way they’d answer properly because people don’t know what I’m thinking!! For example, does tellmesomethingtrue see the bigger picture or notice the small things? How on earth would someone know that about me
I already feel like I’m going to go into this appointment angry as I read it would be face to face when I chose them (right to choose) but it’s on-line. How are they going to see what my eye contact is like? How are they going to see my foot stimming through a computer?
Also I’m cross because they aren’t going to meet me properly. I will be very nervous because of it being on-line. I can’t stand zoom calls.
Also, I’d like to ask them how many autistic people they personally know in real-life and see on a day to day basis. I know loads of autistic people - I work in a special school. If they hardly no anyone in real life then how are they qualified to diagnose me.
I just don’t know how they can diagnose someone having meet them briefly on a screen.

How do you know if you have a special interest as an adult? I don’t have time for hobbies.

Can your sister help at all?

But she wouldn’t remember me as a child.

I have loads . I read constantly, I average 2 books a week. I also always have a tv show on the go. When I read or watch tv I always look things up about characters or cast lists , places etc I emerge myself in it then move on to the next one.
I know all the countries in the world and regularly repeat them, I look up facts about them. I’ve recently done the same with the states in America so now I know all of them. Next I want to learn all the collectives for animals - a flamboyance of flamingos etc
i also do crosswords daily.

Also the informant questionnaire doesn’t have an ‘I don’t know’ option. They either have to agree or disagree with a statement about me and how I think about something without the option to say they don’t actually know.

Thanks for sharing but don’t NT people learn about stuff too. I do the same as you in regards to tv series and movies but isn’t that just normal behaviour if you enjoy a tv show?
I enjoy looking up song lyrics and playing the song over and over again.
I then enjoy learning the song on the piano. How would any of this be considered a special interest? Doesn’t everyone do stuff like this?

I didn't have one. But I got diagnosed. It's only one part of the process

I don’t know why but I’m getting cross. Maybe I’m panicking because my assessment is very soon.

That sounds quite like me but I just figured that was normal for people who like reading and have a curious mind .

I did try to read the dictionary once, and the bible, and an A-level chemistry textbook from start to finish (didn’t finish any of them!)

I had my adult daughter as my person to give a history and current circumstances.She is also autistic.

Mine was on Zoom as well (covid years) and the assessor was pretty good at noticing lots of things and I had two mental health assessment appointments with them as part of their overall screening and history. My GP referred me.

I get what you mean, until I knew I was autistic they were just hobbies. I guess it’s part of a bigger picture? Alongside the sensory/ social/ communication etc . But no I don’t know anyone who deep dives the way I do or who reads like me.

I don’t know anyone who plays songs repeatedly no

I have had a series of things I get interested in and while I'm immersed in them other things get neglected. I tend to suddenly burn out and never return to the thing which has had my total focus.

That is literally me. Thank you!

@AwkwardPaws27my mum also wouldn’t “believe in autism” in the way it presents in someone like me - but I’m about to start assessment process.

Said mother also has very distinct cutlery preferences. Prefers a light bone handled knife, in particular. 🤣

My assessment was online. I don't remember having an informant. I had 2 sessions both of which I found exhausting and overwhelming. (I quietly wept through the second one, I don't know if they noticed.) After the first appointment I sent a long email detailing why I didn't like the assessment and all the reasons I thought it more suited to a male presentation of autism rather than female. I was diagnosed autistic - likely passed with flying colours!

Oh my goodness. You poor thing. Yes I think the whole
process is vastly biased to male presentation. I already refused to complete the original questionnaire from the GP for the referral as I didn’t agree with completing a 25 year old questionnaire developed for males.

I didn’t have anyone. Similar that my parents wouldn’t believe. They also divert any kind of memory task from when I was about 18 months old to me; my long term memory was exceptional, my family know this and therefore my job is to be the family memory bank!

I explained this, they said it was fine and I provided my own memories of childhood. I was diagnosed and told it was very clear cut.

I’m very similar to you in terms of being very repetitive with music; I listen to songs on repeat, learn all the lyrics and like doing online lyrics quizzes! I’d love to do this on piano too but my hand eye co-ordination is AWFUL!

Did you attempt the screener and find you didn’t reach the threshold or did you just not attempt on principle?

No, I refused to do it on principle. It was devised 25 years ago and our knowledge of autism has come a long way since then. There are at least 5 male biased questions that I won’t answer.
I’ve worked both a school for autistic girls and another school for autistic boys. They are so different!!

I requested the CAT-Q test instead and scored highly.

Sorry, I posted in a hurry. Sometimes sibling memories of childhood stories can help to build a picture, even after parents are not around.

The other thing to remember is that the questionnaires to family members form part of the bigger picture rather than being stand alone yes/no tools. They were developed with an awareness of bias on behalf of the completer and can show when someone isn’t answering consistently. It might not be as unhelpful as you think to get your mum to do it (and possibly your sister can do it too depending on the provider). Even if your mum scores you as having no traits (and she may surprise you) that won’t prevent a diagnosis if the evidence is there in other ways.