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Original poster

Adult aspergers support thread

29 replies

GreenLeafTea · 02/03/2013 16:11

Are there any other adult aspies out there who are interested in a mutual support thread for general chat and stuff? Day to day I feel I do ok but there are some things that bother me. It would be good to have others to chat to.

OP posts:
FranKatzenjammer · 02/03/2013 16:21

Yes please. I am not diagnosed yet, but I'm fairly sure I have AS. What do you find hardest about it?

Cailleach · 03/03/2013 11:29

Happy to chip in: got my diagnosis about a month ago. Feeling rather shell-shocked to realise that no, I won't ever be just like everyone else eventually, even if I do learn all their "rules" off by heart.

Still reeling, tbh.

FranKatzenjammer · 03/03/2013 21:22

Sorry to hear that, Cailleach. I am hoping for a sense of relief and 'oh that explains everything...'. Did you not feel any of that when you got diagnosed?

Original poster
GreenLeafTea · 03/03/2013 23:53

Thanks for joining in!!

I was bullied horribly as a teenager for being weird. People always call me weird but I genuinely have no idea what I do that is so weird. But never cared what those people thought. My friends know I'm a good person and I'm happy doing things my own way.

There are two things I'm worried about. The first is my kids. Other mums at nursery sometimes comment on how I handle their behavior such as I let my son wear odd socks to nursery. People only say 'Oh, he has odd socks on' but there is a whole long back story as to why he was wearing odd socks and it was really funny and made perfect sense so I didn't mind. I just wonder why they comment so much on what I do why do they care if I do things a little differently? But then I wonder if I am just being overly sensitive about their comments.

The other thing is that I'm trying to start my own business. I worry that I will over complicate the whole thing and it will be a disaster. I know I can do it but I'm lacking confidence.

OP posts:
FranKatzenjammer · 04/03/2013 08:02

You'll be fine OP. I used to run my own business (I only stopped because I moved country). It was fine- I think people appreciated that I was extremely conscientious and good at the small details (even if not always quite so good at the big picture!). It was also a good chance to work on my 'people skills' (how I detest that phrase!). What sort of business do you want to start? Mine was/is music teaching. I am in a full time job now, but I do think self employment can really suit people like us.

Original poster
GreenLeafTea · 04/03/2013 08:32

Thank you!! Mine's a tutoring business. I'm not really sure why I worry so much when I try to articulate the things I worry about it seems like odd things to worry about. I think too much! My husband always sees a straight road ahead whereas I see everything from 100 different angles. Everyone I have spoken to about my business plan seems positive so I'm hopeful. But yes, I worry so much about the details sometimes I lose track of the objective.

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MaryBS · 04/03/2013 08:44

Another adult Aspie here. I was really relieved when I got my diagnosis, it helped me make sense of my life :), I was 42 when diagnosed

FranKatzenjammer · 04/03/2013 20:09

Thanks Mary. I am 40 and hope for that sort of clarity about my situation, if I get diagnosed. Already my family has started to be a bit more sympathetic to my little ways, since my sister was told that my DN (6) is probably an Aspie. The little lad is so much like me, and everyone has noticed. Do any of you have other AS or ASD people in the family?

MaryBS · 05/03/2013 06:41

Yes, my son is Aspie too. He was diagnosed when he was 5. Thats how I realised about me! My husband and kids are fine with it, the rest of my family aren't that understanding :(

FranKatzenjammer · 05/03/2013 22:20

Wow that's such a coincidence Mary (or maybe more common than we realise!). So I'm not mad then, thinking I'm an Aspie because of DN! I've read various checklists for female Aspergers too and they were freakily spot on for me. How long did it take you to get a diagnosis and how many people did you have to see? I have been putting off even seeing the GP TBH... Has anyone read Aspergirls? I found it very interesting.

MaryBS · 05/03/2013 22:45

There is supposed to be a genetic link, but its not totally about genetics, from what I understand (Baron-Cohen's research on autistic twins). Aspergirls - the book by Rudy Simone? I found it very good.

It took me 6 months from going to the Dr to getting a diagnosis. There is a centre of expertise in the diagnosis of adults in my county (Cambridgeshire), so I was able to get a NHS referral. I phoned the centre and asked if they could tell me which GPs at my surgery had referred adults to them. They said they didn't keep records, but coincidently, they'd just had a referral from my surgery, and gave me the name of the GP, so thats who I went to see. She referred me, no hassle. I filled out loads of questionaires, then saw a Dr at the centre.

There is a website called Wrong Planet, and I joined their forum and looked at people's experiences on there, to decide whether I wanted a dx.

FranKatzenjammer · 05/03/2013 23:21

Yes, I knew there was some sort of genetic link sometimes. I think it's fascinating though that people of our age are now finding out we have AS because of younger relatives. I think I am right in saying that, when we were the age of your DS/my DN, Asperger's writings hadn't even been translated into English yet... What are your most Aspie traits? Mine are needing a lot of time on my own to process things, being awful with change, and various sensory irritations. Oh, and I'm a right antisocial bugger at times. Thanks for telling me about that website- looks good. I like the idea of an autistic 'community'- it seems such a lovely contradiction! How is your DS getting on- are there things he struggles with?

devilinside · 06/03/2013 10:28

yes, waiting for my referral to come through. Have filled in the questionnaires. DS (6) was diagnosed with ASD last May, DD (8) showing signs of being borderline aspergers, but not sure whether to persue a diagnosis for her

MaryBS · 06/03/2013 11:22

Devil, girls present differently from boys. Both genders go through a tough(er) time at puberty, I think it would be worth pursuing for that reason.

I'm hypersensitive to noise, quite childish/childlike at times, have clothes sensitivity and a warped sense of humour. I have high anxiety levels, and struggle with body language unless I concentrate. I'm also wheat intolerant. Think they're my traits :o

InkleWinkle · 06/03/2013 12:18

So, if you don't mind me interupting, how do you get a diagnosis? I've done some of the online questionnaires & from them & MN I've pretty much made sense of lots of things!
Do you just make a Dr appt and go in and say 'excuse me I have Aspergers' ?
Have you found it worthwhile having a diagnosis?

MaryBS · 06/03/2013 18:30

Yes, you go to your GP, you can't get a referral without it. I did some research to find a sympathetic GP. I went to the GP and said that I believed I had Aspergers, that I only realised when DS was diagnosed. GP said she wasn't an expert in diagnosis, so referred me to CLASS in Cambridge. I was prepared to explain why I wanted a dx, but she didn't ask!

www.autismresearchcentre.com/clinics

Some useful information here too:
www.nhs.uk/Livewell/Autism/Pages/Diagnosisinadults.aspx

InkleWinkle · 06/03/2013 21:20

Thanks.
Thing is, I've managed to get to 40 relatively OK having only in the last few years realised that there's a name for my 'weirdness' but I'm pretty sure DD1 (8) is the same, do you think anything would be made easier for her if she had a diagnosis?

Original poster
GreenLeafTea · 07/03/2013 07:47

To be honest I haven't had an official diagnosis. I think it would really upset my parents. However my son is just like me. He can't sleep unless we do the full bedtime routine, he's a very picky eater preferring plain food, he hates change even buying him new shoes or clothes is a challenge, he hates loud noise, he has these total meltdowns when he can't do the things he wants to do well. But he is very bright and creative and a lovely boy.

OP posts:
Original poster
GreenLeafTea · 07/03/2013 07:54

Adding: some of my friends and family get annoyed about how I handle his behavior. They think I should be stricter with him or more forceful but it is hard because I know how he feels.

For example at bath time I just say I'm going to take a bath now. He will come in the bath but in his own terms. If you ask him to take a bath, he won't go and the more you ask him the more upset he gets and he will absolutely not go. I've tried explaining this to my husband but it makes no sense to him.

Thanks for the links I will check them out.

OP posts:
Meglet · 07/03/2013 11:31

My GP is referring me for diagnosis. Not sure when it will happen but he's sent me a copy of the letter to the PCT. Will try and keep an eye on this thread.

BumpingFuglies · 07/03/2013 11:57

Hi all, we are at the beginning of DP being assessed for ASD and the DC, 5 and 8 being assessed for ADHD.

Thanks to Cailleach for directing me here.

Obviously it's early stages, but I'm trying to get a feel for the road ahead, which seems long and difficult from what I have read here.

Do any of you have advice for me on how to support DP, should I change the way I relate to some of his difficult behaviours? What helps you? Sorry to be a bit vague, brain's a bit scrambled just now. Smile

MaryBS · 07/03/2013 12:42

Inklewinkle, if your DD had a diagnosis, then it may help her at school. As a girl on the spectrum, I really noticed a difference at puberty. Things got so much tougher for me. But if she is coping fine at the moment, you might feel this isn't necessary.

BumpingFuglies, it may be a question of separating the things he can't help from those he can, and also recognising the signs of when things are getting a bit much. For example, in an argument, if I am pushed into a corner with no wriggle room, I will go into meltdown. Waiting till I calm down before discussing bones of contention is a sensible move.

TheSilveryPussycat · 07/03/2013 13:34

Hi all, there's an old relevant thread started by fuzzpig which I used to post on.

I am 60, pretty sure DF (93) has it, then started to wonder if I did too. Think I have it, and Inattentive ADD. I was weird, had v few friends at school, v bright, an underachiever. One way or another I ended up with a diagnosis of bi-polar, but my psych listened when I thought it all stemmed from AS and ADD and he has referred me for assessment.

I do a lot of service user involvement work, and I feel I should have my suspicions checked out as my diagnosis is relevant to that work. Since I started assuming my self-diagnosis to be correct, I have found better strategies for coping with life.

Funnily enough, my assessment appointment dropped through the letterbox an hour or so ago.

BumpingFuglies · 07/03/2013 15:45

Thanks Mary that's the sort of thing I need to think about. As I said to him bluntly (but we laughed) I need to sift through the behaviours that are possibly down to his condition or just him being an arse Grin

It's a long road ahead I reckon.

Silvery I saw the other thread but this one had more recent replies - should I post on that one as well do you think?

devilinside · 08/03/2013 10:15

Hi, I shall bring up my concerns about DD at parents evening next week. The reason I am hesitant is that DP is obviously borderline aspie, but he has enough 'NT' traits to make him fit in. It hasn't really caused him many problems in life, plus he is genuinely happy to be anti-social.

If fact it is me, who is far more aspie than him, that makes social arrangements for the two of us.

In terms of getting a referral. I pretended to take the antidepressants that my GP prescribed for 6 months (why would I take them when I'm not depressed!) and then wrote down exactly why I thought I was on the spectrum.