Support thread - adults on the Autistic Spectrum :)

[fuzzpig]

Hello!

I've seen a lot of MNers mention being on the Spectrum, whether diagnosed or not. I thought we could use a long-running place to chat, share coping strategies and basically to know there are other people like ourselves, who won't judge us for being different.

I'm new to all this myself - only realised there was a possible name for How I Am a couple of weeks ago (thanks to MN)! Now I have a referral to an adult ASD specialist, to see if I have Aspergers. It's all happened very quickly.

Enough waffle from me (for now anyway...) but I hope other people will come along and find this thread useful. :)

It's either that one or st bartholomews - I don't live in London but I'm not too far by train. He wasn't sure if they were part of the same group so I don't know which one he's sent the letter to. He also said he's not sure if they will see me straight away or if they'll insist on more blood tests first (ie to rule out other stuff). Hence the uncertainty (). The paranoid part of me just thinks they will send me away.

If you wouldn't mind ringing some time it would be very helpful. That's really sweet of you :)

Hello, wondered if I could join this thread too!! I've not been diagnosed but think it's very likely I have Aspergers (amongst other things). I've done the on-line tests and score highly in all of them. DS was diagnosed two years ago and there are several other family members with asd too. The more I read about it the more everything just seems to slot into place.

I've been wondering for a while now, is it worth trying to get a diagnosis as an adult? What does this involve and is anyone able to tell me how long it takes. I'm not in the UK so it might be different here but it would be useful to have a rough idea.

Thanks

Hello!
I'm in the uk and have found it quite easy to get referred - but from what I've heard that is unusual. I'm 25 and have had a lot of mental health issues, and I think it helped that I could explain how the AS symptoms have really affected my life. I was lucky to see a decent doctor who really listened and took me seriously. My dad OTOH (early 60s) saw his GP, who is normally really good, and he just said "oh lets get the depression sorted first shall we?" and also said that as he'd scored 31 on the AQ test he couldn't possibly have AS as it is below 32...

In the country you live in is there a national autism charity? We have the NAS and they gave me loads of useful advice including on the phone. Maybe you can find something similar and they'd know more about how well ASDs are understood/diagnosed in your area? :)

Fyfan, are you in Sweden with a naughty name?

Just read that you are getting assessed soon Fuzzpig. I hope it goes ok for you. I would like to hear what happens in the assessment in case I get brave enough to ask for one sometime. I can't think about that right now because I have too many other problems to be worked on. Most of my life is in chaos and it is not helping it is the summer holidays so we have no routine to follow which makes everything more difficult.

Hi system, glad to see you again, I've been wondering how you are! Sorry to hear life is so chaotic. Anything we can help with or chat about?

I haven't given much thought to the assessment although it is in 2 weeks time. Been preoccupied with physical health, am going back on Tuesday but on phased return - starting at 4hrs a day.

When it gets near to the appointment I'm going to reread my posts on here, the NAS page on AS and the list I wrote of symptoms when I saw the doctor. I probably don't feel the same about it all now as I've had several months to think about it, but I am worried that I'll get into the assessment and he will ask "so why do you think you have AS?" and I'll just draw a blank! It's like revising for an exam.

If anyone who has had an assessment can tell me more I'd really appreciate it. :)

At my assessment I spent a couple of hours filling out test forms. I did the AQ test, the EQ test, RAASD test, ASSQ test, Yale-Brown test, Mclean test, and the HADS test. I then spent another hour with the specialist doing the ADOS test, which is a structured interview.

Was that in Sweden?

I've not been told anything about what will happen, I did ask the CPN if my parents will need to be involved as I've heard some places ask about the patient's childhood, but there's no sign of that happening here (good thing too)

I will be so nervous if I have to fill in a load of paper forms, as I said it's like an exam! What if I do it wrong and don't get enough points or something? Or what if they think I've lied on it?

There are things they have to know about your very early years. Mainly around language development. If you cannot provide this information then it is not possible to diagnose Asperger's syndrome. If you meet the criteria you will instead get a diagnosis of PDD-NOS.

The ASSQ test is about symptoms before age 12. No matter how autistic your problems, you cannot be diagnosed with an autistic spectrum disorder if the problems developed after this.

My assessment was in Sweden but it followed the accepted protocols of autism diagnosis. Where ever you are, the assessment should follow a similar process.

Should add, my nephew was diagnosed in the UK and his assessment was pretty much the same as mine.

My problem is that my parents paid no attention to my problems. I know a lot about my childhood - a hell of a lot more than they do - would that be enough? Or would they think I was lying (I'm so paranoid :()? I remember looking up various tests and the NAS website said that some, but not all, will require parents to be involved (although what would they do if the parents had died?!)

The only thing my parents were bothered about was that I was clever. That's all they ever talk about with regards to my childhood. I know I spoke early, I put two words together at 10 months ("more cheese" :o). I was reading fluently, writing and picking out tunes on the keyboard before turning 3. I had some IQ tests and the report said I was highly gifted should go to a special school. That's the stuff that my parents talk about. They had the clever child they could show off about and nothing else mattered. At home I was ignored and stuck in front of videos most of the time.

Not that I'm bitter or anything.

I'm worried now - finally got the chance for understanding and acceptance and now the fact that my parents ignored me will mess it up AGAIN?

I try not to think about my childhood much, it wasn't a happy one. But I guess I should do so in preparation if they are going to ask me stuff about it? This is going to be difficult :(

Sorry that post was really melodramatic. Just a bit overwhelmed with everything going on ATM. Even managed to cry in front of my boss when she visited me yesterday.

My parents weren't involved with my diagnosis either. I was able to answer the questions myself. Primarily they will want to know whether or not your language developed normally. The other things they'll want to know are on the test on page 12 of this document. Have a read and see if you can answer them yourself. If not, find out from your parents before you go to the assessment if you can.

By 'whether or not your language developed normally' I mean did you start speaking in line with your peers. eg first words, starting to string sentences together. My friend has a son with HFA he didn't say a single word until he was 5. That is what it's looking for.

Thank you :) I will look at the link later.

Am I right in remembering what I read on NAS site, that if language development was very late they would dx HFA, and if it was early or normal they would dx AS?

Yes, pretty much. Although the difference won't matter once the new DSM comes out as there will only be 1 diagnosis Autistic Spectrum Disorder.

The parents involvement would worry me too. If its just questions about talking though I can answer them myself and I also have documents backing this up e.g I would never voluntarily speak at school, although I could talk (I did at home if I chose to but I've been told I was still alot quieter than siblings/other kids my age) and even when I did like in 1 on 1 reading I would talk only in a whispering voice. This went on until I was a teenager so was noticed by a lot of teachers in that time. No one was ever bothered about it though because I was so far ahead of other kids in reading/writing and maths. I think today that kind f thing would be called selective mutism. I don't know when I started talking so I am going to try and find that out (if my mum remembers and remembers accurately for me and not one of my other siblings) but I do know my first word was 'radiator'

Have had a brief look at that list and I can answer most. I don't think my parents could answer that many. My teachers would have been able to though I think. I know they saw me as unusual, but I don't suppose they ever flagged it up to my parents as I was never naughty and was a high achiever.

Argh just went into town. First trip out (other than doctors stuff) for a couple of weeks, just to see if I could cope physically. I did cope physically - a bit achy and having a rest now but not as bad as it could be - but not mentally :(

It was SO crowded, I shouldn't have gone on a Saturday I guess, it was awful. I just rushed through the shops I needed to go to but I feel really on edge.

Thanks everyone for the advice. Will have a look at the link in a while. I was really surprised at the number of tests involved. Not sure about my language development when I was really young either. I could ask my parents but they would say it was fine even if it wasn't.

kladdkaka yes i am in Sweden with a naughty name Had hoped to continue the cake theme but Prinsesstårta was already taken!!!

:o Naughty! Naughty!

The process for me was first to ask the doctor at vårdcentalen for a referral and explain why. He then referred me to Vuxenpsykiatri within vårdcentralen. I was seen by a special nurse there who asked about why I felt I needed a referral. She made a recommendation to the psychiatrist there who then made the referral to an autism specialist at the hospital. It was actually quite a quick process, about 3 months from start to finish.

Forgot, the problem with language develop that they are looking for is so significant that your parents would be highly unlikely to think it was fine if you had it. It would have meant specialist involvement from a very early age.

Forgot something else, if you know who deals with this kind of thing at the hospital you can self refer and jump the first 2 stages. I did that for my daughter as nobody else could see her autism.

Thanks kladdkaka, 3 months is really impressive. It took 2 years to diagnose ds in the UK. Still not sure whether to just live with it or seek further advice. It is nice to know that it shouldn't be a really drawn out process if I do decide to obtain a diagnosis.

I think it's much quicker as an adult than a child. My daughter took nearly 2 years to get her diagnosis. I suppose there's a lot more concern that it may be other problems or things they'll grow out of, plus they need info from many different sources. Whereas as an adult they go primarily on what you say, after all you know yourself best.

A couple of things the specialist asked me, that you may want to consider, is 'why do you want a diagnosis? What do you want it for? How will it benefit you?'. I wanted answers as to why my life was a mess, so I could begin to put it back together. Since diagnosis I've learnt that there are all sorts of support available post diagnosis which will be a huge benefit to me. I'm currently in the process of accessing them.