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Support thread - adults on the Autistic Spectrum :)

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

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. smile

MarynotBeSarcastic Fri 16-Mar-12 14:35:15

smile

PooPooInMyToes Fri 16-Mar-12 17:36:02

Good for you. I think my brother is on the spectrum and that being diagnosed might help him, but its not really the sort of thing you can suggest to another person is it. They need to realise and want to find out themselves. If i mentioned it i think he is the type to take it as a personal insult.

SystemofaDowny Fri 16-Mar-12 19:32:01

Hi fuzzpig. I followed the link to your new thread here. I have been doing alot of thinking today again and failing to write my report because of it. I have almost convinced myself to bring it up at my doctors appointment this week. This might change by tomorrow though but what you said about being impatient made me think that I probably won't be able to rest until I get a definite answer either way. Do you mind if I ask what you said to your doctor and what questions he asked you? If I am going to do this I will need to prepare and work out what I am going to say.

Also have you done this test? I found it online. It is longer than the last one I did but I scored about the same percentage on both.

www.rdos.net/eng/Aspie-quiz.php

fuzzpig Fri 16-Mar-12 19:52:36

Hi System, I'm glad you followed the link smile

The weird thing was, I barely had to say anything. I think I got lucky and had a nice doctor. I was horrifically nervous and basically said that people had told me Aspergers is a possibility (I didn't say Mumsnet as I thought I might get the hmm face!), and that I took the AQ - that's worth mentioning because unlike other tests it apparently is respected. She said quite early she was happy to refer but asked me to describe some symptoms anyway. I stumbled through a few main ones (focused on the 'triad of impairment' mentioned on the NAS site) and then just gave her the list I prepared.

PPIMT - I don't know actually, since all this happened (a mere fortnight ago! shock) I have frequently thought to myself, WHY did nobody tell me this. Not one person (even the many MH staff I've seen over the years) said anything. I half feel like it is my own fault for hiding my symptoms fairly well - most of the stuff like obsessions and routines are all done in my head now because I haven't dared expose it since I was young and worked out it is abnormal - but I just wish somebody somewhere had flagged it up years ago.

You can't know his reaction... Maybe it will be relief? If it gives him an answer? It depends if he has any self insight I suppose. Are your parents around to help broach it sensitively? He might be angry at you but in the long term he may thank you.

fuzzpig Fri 16-Mar-12 20:10:03

162/200 on the quiz. Some of those questions, especially the really specific ones, were so me it was like they had opened a window into my soul.

fuzzpig Fri 16-Mar-12 20:43:58

Oh and 51/200 for 'neurotypical'. For some reason, that score hurt a bit sad

SystemofaDowny Fri 16-Mar-12 22:48:17

My result was:
Your Aspie score: 166 of 200
Your neurotypical score: 36 of 200
and I learnt a new word: alexithymia

Anna1976 Sat 17-Mar-12 03:06:16

Great support thread Fuzzpig.

[arrives, goes and sits in corner with book...]

BTW PooPooInMyToes: your brother could actually find it a blessed relief to work out why stuff has been so bloody difficult all his life. He might not be insulted at all, if it gives him a framework for why he's like he is and what he needs to do to get round things and live an easier life.

fuzzpig Sat 17-Mar-12 12:41:01

Gaaaaah

Just went to town with DH and DCs, am really struggling sad it's raining so the mall is extra busy. I have to admit though, it's kind of nice to know there may be a reason for feeling that way in crowded places. Not just being a wimp.

I've started getting worried about working FT too - I'll do alternate Saturdays and it is really busy then. It's just got a whole different atmosphere and I struggle when I go there socially. Maybe it'll be different as I'll be there working but I don't know sad

MarynotBeSarcastic Mon 19-Mar-12 07:43:53

Hope you had a restful day yesterday after Saturday. Knowing why you are like it does make you more aware of your feelings, but I've found it also gives you more control. For example if I know you am going to a difficult and stressful event, I try to arrange "time out" time befoe and after to enable me to function better.

SystemofaDowny Mon 19-Mar-12 10:37:13

I failed. I tried to talk to the doctor but just couldn't say the right words. I started shaking so much then got worried I was doing that in front of someone and my mind went blank. She kept asking if I wanted to say anything else. i did but no words would come out so I just said no. Why can't I do something simple like other people can. I hate myself so much right now. I wish I was normal.

PipinJo Mon 19-Mar-12 11:09:26

If you cross reference this post to SN children (do it myself but don't know how?) you will meet other parents who have AS themselves and now parents to AS children too.

MarynotBeSarcastic Mon 19-Mar-12 11:27:06

SystemofaDowny, don't hate yourself, thats a common feeling I can identify with. But if this were a friend or a child you were talking about, then you wouldn't hate them for something they found difficult. You'd want to help them and support them. I tell myself how can I hate myself for something that I wouldn't hate in others? When you feel stronger, perhaps you could try again? Maybe write down what you want to say, and then you know you've got that as backup should you dry up again. If necessary you can give the Dr the piece of paper instead.

PipinJo, you are right about parents of children with AS often having AS as well, but sometimes the overlap causes conflict. Its very hard to deal with when a parent is railing against the injustice of their child having AS, when you know you have those exact same traits. Its easy to get caught in the flak. No reason not to try, but when I am feeling delicate I tend to steer well clear.

devilinside Mon 19-Mar-12 11:58:08

Hi - good idea

My son is in the process of obtaining his diagnosis of HFA

Pretty sure all the adults in my family are on the spectrum, including my mum and sister, and, as for my dad - he's an ex-chess champion, who loves trains and science (not much doubt there).

Does anyone have any anxiety issues connected to their ASD? I am thinking of going to the GP to get some help for my social phobia. I suspect it stems from having aspergers and being forced to socialise at school (it started when I was 7)

DP also has aspie traits (although he's more NT than me) which does cause a few fireworks in the relationship

devilinside Mon 19-Mar-12 12:11:41

My score:

Your Aspie score: 152 of 200
Your neurotypical (non-autistic) score: 48 of 200
You are very likely an Aspie

fuzzpig Mon 19-Mar-12 15:46:04

System, you haven't failed. Despite not being able to say anything, you've still communicated that you are worried, as your doctor picked up on it and wanted you to say more.

I agree you should write it down. You could just hand over the list at another appointment. Your struggle to say what you need could work in your favour too.

Devil, have you got a diagnosis? And if not are you planning to? My dad said yesterday he is going to follow it up - when I linked him to the NAS site he said, as I expected, that a lot of it resonates with him. They said a lot of it doesn't apply to me, which is frustrating as I know it does, they don't know much about me at all and never have. They weren't the most attentive parents.

I spoke to the managers at work today, it went pretty well. We agreed that I can go to them with any worries about the job, although I made it clear that the job itself is brilliant for me. I said I was a bit worried about busy Saturdays but they reassured me that I wouldn't be doing as much with the public on those shifts anyway, and that I could always tell them if I struggle (they are going to tell the other deputy manager who works on my Saturday). I feel a lot better after talking it all through.

SystemofaDowny Mon 19-Mar-12 17:58:50

Maybe hate is the wrong word. I don't know how else to say that I don't like it, that I can't ever say the things I need to. I am so bad at communication I can't even explain on a forum how I feel and get people to understand. I even had a list with me that I wrote before, but I couldn't give it, even that was too hard. I don't know what you mean that it might work in my favour, how can anything go right when I can't explain. If someone could just read my mind for 5 minutes they might be able to understand. Unless that happens I will be stuck like this forever. I have had enough of getting told I am depressed and need to take anti-depressants. I am not depressed and the tablets do not work.

fuzzpig Mon 19-Mar-12 18:23:02

Because the doctor has already seen how much you struggled to get your point across in the appt today. They saw you being unable to communicate, getting nervous when asked a question about yourself, not making eye contact, etc. Those are all ASD-type traits so I'm sure that's only adding to your case. If you breezed in smiling and confidently saying "hello, I think I have ASD, here's why blah blah blah" then they might be more surprised and even a bit hmm?

I really understand about the antidepressants. How can they work on people like us? They don't change how we are. It is really common for Aspies in particular to be treated for depression instead.

My friend is emailing me some links specifically about women and adult diagnosis, as apparently it is missed more in females. I'll post them here when I get them.

SystemofaDowny Mon 19-Mar-12 19:28:44

OK I think I understand what you mean now. She made me another appointment for next week so I will just have to try again. It would be so great if I just walked in and she said 'I think you have ASD, do you agree?' then I could just say yes, which is easy. I much prefer those kind of questions with definite right/wrong answers. If someone says What is wrong? my brain just freezes but if they said Is it this or that? I can just say yes or no even though it is asking the same information. Not sure that makes sense to anyone except me.

I have several theories about why anti-depressants( in particular selective serotonin reuptake inhibitors) do not work on me. I studied pharmacodynamics/kinetics and psycho-active drugs in depth last year. If only I could get my thoughts down in writing and publish a paper on it, then all that information wouldn't be wasted.

fuzzpig Mon 19-Mar-12 20:32:42

It sounds like a receptive doctor, so you might find it easier next week. I think she might not let you get away with not telling her IYSWIM, and that's a good thing.

Is there really nobody who could go with you? I wonder if there's an MNer with experience in this subject who could go with you. I'm in West Sussex anyway. Or maybe could you say it over the phone beforehand? Pass a message on so she knows before you get there? I know it is so hard to say things, and open questions are just awful because they aren't definite! That's why I love maths, as usually there is a right answer, but I struggle with the more abstract, indefinite concepts. I HATE recurring decimals, but the fraction equivalents are fine!

I'm intrigued by your research, probably wouldn't understand much of it (science not my strong point) but I have tried lots of SSRIs. I also had SSNRIs and I was wondering about norepinephrine and its relationship to passivity. The whole adrenaline = fight or flight thing seemed to bypass me. I do not fight and I do not run. I never have. I just get paralysed no matter what the situation. This may be learned (I was sexually abused) but I'm not sure, I feel like I've always been like this. I was a passive child, no tantrums etc. I just wondered if it was some weird imbalance between adrenaline/noradrenaline. Anyway, the SSNRI I did have had a massive effect on my heart after years on it, I think norepinephrine is involved in the heartbeat isn't it? Sorry I should stop rambling now.

devilinside Mon 19-Mar-12 21:29:34

My communication skills are non-existant too. (ironic as I used to work in PR), but in my job I used a written script that I had prepared, plus many of the journalists I worked with were very geeky , and funnily enough I got on quite well with some of them - they really appreciated my honesty (don't think they'd ever experienced that before in a PR person.

Sorry, going off on a tagent, I have been on Mumsnet for almost 7 years (with a few namechanges), and haven't made one single friend on here, I don't think anyone has ever sent me a private message either. I am just as rubbish 'socially' on a forum as I am in real life.

SystemofaDowny Mon 19-Mar-12 22:01:47

I think having someone with me would make things worse. More people usually means more anxiety for me. I am in East Sussex. I also love maths. Doing a maths problem or even a puzzle like sudoku is how I calm down. Its weird but when I do numbers I can block everything else out. I don't like any kind of statistics though as they are usually meaningless unless interpreted. I also really like science because it is logical and fact based as well. I am currently studying molecular biology and biochemistry but don't worry I won't talk about them because I know most people do not find the subject as fascinating as I do.

Do you know norepinephrine is the same thing as noradrenaline? I think the reason it has two names is linked to the fact it acts as a hormone and a neurotransmitter too. Freezing (and the associated hyper-vigilence) is actual a normal part of the acute stress response along with fight and flight. It is commonly seen in animals especially where the prey is much smaller than the predator. In these cases the wisest option is to stay still and quiet and hope it loses interest rather than try to fight or out run it.

MarynotBeSarcastic Tue 20-Mar-12 07:22:01

Maths is my subject too, and I like doing Sudoku for relaxation. The biochemical stuff sounds interesting, although its not my passion. I did really like that sort of thing at school though! I had a condition in pregnancy called Obstetric Cholestasis. I diagnosed myself, and this upset my GP. The consultant on the other hand loved it that I researched the condition and kept him up to date. I used to read the research papers, googling any terms I didn't know/understand. He used to get me to explain my condition to any junior house drs who were interested smile

fuzzpig Tue 20-Mar-12 08:55:54

Devil I work in customer service (well part of the job is, anyway) and I've found it easier than I thought. We have procedures for everything, and I was also an apprentice so the NVQ and college course helped too. It's like I have an algorithm in my head for each situation. I get a bit upset if it diverts from it, say if a customer suddenly complains. I can hide it though, as I hide everything else.

I'm not a massive fan of sudoku - I don't like that after a certain point it is purely putting in whatever's left, rather than having to work it out IYSWIM. What I really love is a magazine called Beyond Sudoku - it's A4 and about £3.40. It's only available from WHSmith, it is AWESOME. I can lose myself in it for hours. I get annoyed with DH if he tries doing a puzzle from it and guesses something though. Guessing is BAD. IMO. blush

Thanks for the explanation System - I've often wondered why there were two names for the same thing. It's good to know that freezing isn't totally wrong (am I just an animal?), but I don't know why I do it for absolutely everything. Also why is there such a big thing about F or F and nobody mentions the third option? I feel discriminated against hmm grin

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