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Support thread - adults on the Autistic Spectrum :)

(718 Posts)
fuzzpig Fri 16-Mar-12 08:41:41


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. smile

PandaOnAPushBike Fri 04-Jan-13 23:09:49

I scored exceptionally high on the OCD screening test which was done as part of the ASD testing. I was told that under normal circumstances this would be cause for concern and would need looking at. As the other tests confirmed I had AS the OCD results were ignored as the consultant felt these were within the normal range for someone with AS and were a symptom of AS rather than a symptom of OCD. If that makes sense.

Cailleach Thu 31-Jan-13 18:39:08

This was the thread I was trying to find earlier. Have already started another thread but thought I would add this here for info.

Well, that was surprisingly easy; no muss, no fuss, as they say. Took about three months from start to finish.

I am posting this because I know some of you were thinking of being referred for a diagnosis and you may want to know what the process involves.

I wrote a letter to my GP, (outlining my lifelong difficulties which are mainly social but also sensory plus possible signs of a genetic link), who read it in silence and then said "hmmm, yes I think you definitely are." Was then seen by a counsellor who asked me lots of questions, also said "hmmm, yes I think you are too." Was then referred to a psychologist chappy who went through my whole life history (took my Mum along and he asked her lots of stuff too, mainly about babyhood / childhood.)

And then he said "yep, you're ASD alright..."

So there we are. Hey ho. Now being referred for something ominous-sounding called "post diagnosis counselling".

Was such a huge relief when he told me: it does make so many things startlingly clear. Also feel a bit of a fool that I have nearly got to 36 years of age without realising all this. Quel muppet, eh? (Apparently this lack of insight into yourself is common with ASD.)

I feel a bit shell-shocked really, even though I knew what he was going to say.

Think the gin may come out tonight: I may even whack some lemon in it.

PandaOnAPushBike Sat 02-Feb-13 16:41:18

Welcome to the club. I got my diagnosis at 38. It was only when my daughter was being assessed that I began to realise that my responses to their questions would have been the same as hers. Therefore if she was AS then I must be too. Still came as a shock to have it confirmed though.

devilinside Sun 03-Feb-13 18:31:52

Hi, I have been referred and just waiting for appt to come. Can either of you give me some details on what is likely to happen at the assesment? Do I need to bring a family member? don't think my mum will come as she doesn't do supportive type 'social' stuff (funny that, eh!). DP probably will though

PandaOnAPushBike Sun 03-Feb-13 23:45:28

It was just me at my assessment. The main part of the assessment should consist of the Autism Diagnostic Observation Schedule (ADOS) which is a structured assessment process. In adults it usually takes the form of an interview with set questions, where the assessor isn't just looking at the answers given, they are also looking for other indicators of autism in how you respond to that interaction with them.

In addition to the talking part, I also had to do several written screening tests such as the AQ test for autism but also ones to rule out other things, such as anxiety, depression, OCD, borderline personality disorder etc. But I think this part varies from assessment to assessment and how thorough they are being.

The process is much shorter and less involved than the assessment for children.

Funnily enough in both mine and my daughter's cases, the person doing the assessment (different people at different hospitals) said after formally confirming the diagnosis through the ADOS thingy, that they knew within 5 minutes of meeting us what the results would be.

Cailleach Mon 04-Feb-13 00:58:49

The assessment on the 31st was my second: the first was with a junior psych who filled out a short questionnaire, then agreed that I was probably ASD and referred me to a more senior person. This was back in October. My referral came through pretty quickly.

I was asked to bring someone who had known me for a long time: preferably a parent. (I took my mother, who confirmed details about the family's suspected traits and other things about me and my childhood.)

The assessment took the form of the psychiatrist filling out long questionnaire whilst referring to the DSM IV (diagnostic manual for psychiatric conditions.)

I had no written screening tests, unlike Panda. This may or may not be because I had written a fairly long and detailed letter to them to ask for a referral initially and to outline my lifelong issues.

Funnily enough, Panda, I very much felt that my consultant made up his mind fairly quickly with me, too. The interview was supposed to last 5 hours, or thereabouts, but only took 3. I did feel that he more or less skipped over the second half of the interview...I don't mean that he was careless or eager to go elsewhere, he just seemed to have made up his mind by then.

Good luck with your appointment, devilinside

mountains Thu 07-Feb-13 19:28:50

Hi, I was wondering if you had NHS diagnoses, or private ones? Not read the whole thread, evidently, but I wanted to see my GP about it tomorrow... I asked him once already to refer me, and whilst he was sympathetic, he told me that since there's no services after diagnoses anyway, he could not justify the expense. I want to go back and tell him I'm interested in self-advocacy groups and that it's my reason for needing one. I think I might get an NHS assessment, but I'm worried of a year-long wait, and I'm tempted to go private, even if it means getting into debt, because I really want to know now. I have a part-time job, looking for more work and finding it so difficult. (I'm in Kent and would apparently have to go to Bromley for assessment, according to the NAS; in a place that does both NHS an private).

Cailleach Thu 07-Feb-13 22:20:48

Mine was NHS, Mountains: took about 3 months in total from initial GP visit to diagnosis. I am aware though that provision of services from the NHS varies hugely across the country, so I wouldn't take that as any kind of definite timescale if I were you.

One thing I would advise you to do is to do what I did and write down all your symptoms and - this is the important bit - to explain there how you think your condition has impacted your life both past and present.

I think they may be more prepared to refer you if you can demonstrate that your condition is affecting your day to day life at the moment.

I have been told that there ARE counselling and support services: I will have 12 individual counselling sessions aimed at ASD people starting in a couple of months time. I didn't ask what this involves, I should have done perhaps but I was reeling a bit from the diagnosis at the time.

Again, what provision there is for ASD people may vary in your area.

Wishing you luck,


mountains Fri 08-Feb-13 01:00:03

Thank you Cailleach , that's very helpful, and good to know about the services, I had no idea there was such a thing as counselling aimed at pple with ASD, it's good to know it exists somewhere.
I might wait until Monday for an appointment, and clarify and write my points; But then he does know me well, and he happens to be a customer where I work, so he has, conveniently, seen first-hand my limitations in the work place! <sad silver lining grin > Yes I do see what you mean. It won't be difficult.... : /
thanks again.

devilinside Fri 08-Feb-13 10:53:04

Hi mountains, I my GP referred me eventually, after I wrote her a long list of why I thought I was on the spectrum. (after I pretendend I had taken the anti depressants) Frankly, I need a diagnosis so I can draw a line over the shit treatment I got at school, even though I know that I function well enough to survive in the real world, and hold down a job. Trouble is, I feel like I'm 20 years behind everyone else in terms of maturity. Finally passed my driving test and started a degree (not finished) at the age of 40

mountains Fri 08-Feb-13 21:55:46

Thank you devilinside

"Trouble is, I feel like I'm 20 years behind everyone else in terms of maturity." I feel like that too... Still can't drive (40 too), and discover everyday new ways I have been p***ing people off unintentionally... (if that makes sense)
Did any of you with a diagnosis NOT have to bring in somebody who knew you as a child? Not only are my family not English-speaking or living in the UK, but nobody seems to remember me as a kid, including my mum. Guess it means I must have been a typical child?

PandaOnAPushBike Sat 09-Feb-13 22:29:57

My assessment and diagnosis was through the NHS in Sweden.

fuzzpig Sun 10-Feb-13 10:04:06

Remarking place!

Haven't heard anything from CMHT for ages. Last I heard was when I saw the psychiatrist in November, he said he would refer me to a psychologist for further assessment. But it seems not hmm

I am really more focused on physical health right now though - now that my diagnosis of CFS/ME is official I am hopefully reducing my hours at work. That said, it has taken becoming physically disabled to make me see that I can't keep hiding all my emotional/psychological problems any more, and I want to make this the year that I finally start confronting it all.

The great news is that as part of my treatment for CFS I am attending a group for CBT type therapy, and will have individual sessions after. I hope I will have some CBT locally as well in the future.

I think I am actually making a couple of friends in RL as well - scary but exciting!

Hope everyone is ok, I'm going to catch up now.

fuzzpig Sun 10-Feb-13 10:18:55

Thanks for all the info about the diagnostic process. It's interesting, and a little scary, how varied it is.

TBH I don't hold out much hope for a dx. The psychiatrist I saw was so forceful and pretty much ignored what I was trying to say, he just sat there reading my hospital notes from ten sodding years ago - when I had just revealed the abuse and was self harming. Of course the focus then was on the self harm and abuse, we never even got to the deeper problems. Some people have said that all the problems are caused by the abuse but surely people with AS can be abused too hmm - I remember issues that predate the abuse and also my dad is incredibly similar. My parents don't remember much about my childhood because they were pretty shit parents TBH and were only interested in my academic achievement.

Athenaviolet Wed 20-May-15 21:12:13

Is anyone from this thread still around?

I've found it really useful reading.

I got 154/200 and 51/200 on that test. Not really news to me.

I'm enquiring about a formal diagnosis on Friday, compiling a list of 'symptoms' atm to hand over.

A couple of things that haven't been asked that I'm wondering if anyone else has experience of: I hate hearing my own name and never call other people by their names- does anyone else feel like this? I wonder if it is an aspie thing? I also have the symptoms of an autoimmune disease of my joints. I think I've read somewhere that there can be a link between asd and autoimmune conditions-anyone else experienced/heard of this?

hedgehogsdontbite Sun 31-May-15 19:59:13

I'm still around in one form or another (PandaOnAPushBike).

I get lots of joint pain. I was diagnosed with fibromyalgia prior to my AS diagnosis but now I just think it's part of the AS. I also discovered recently that I have hypermobility, common with AS, which could also be a factor.

MelamineTeapot Sun 31-May-15 20:32:31

I'm still here too, several name changes later. Sorry I've only just see your post from 20th May, how did it go last Friday?

The name thing rings bells with me, but more in the past rather than an issue I have now. I know i had a fairly long term BF at one point (3 year relationship) and I could hardly ever bring myself to say his, completely normal, name out loud for absolutely no good reason at all. I always called him by a nickname when speaking to him directly and would often wait until someone else used his name in a conversation, so that i could speak about him using a pronoun only.

I can't think of any examples like that currently though, probably the last would have been when my DD was born, i refered to her as 'the baby' almost all the time instead of using her real name, which i really loved but it felt weird saying out loud. I don't remember stopping that but it must have been around the time DS was born. i still often call DD by a nickname instead though, where as I have never had any issue with using DS's real name.

EauRouge Tue 02-Jun-15 20:56:37

Athena, I saw your AIBU thread and PMed you a link to the current support thread, here in case anyone else is looking.

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