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. :)

Dylthan - sorry that the diagnosis hasnt brought you any help or support at work. I think it's a shame you have been advised to hide it. Obviously there's always a risk that people won't understand or don't want to understand, but surely that's your choice.

PermanentlyOnEdge - I wouldn't be inclined to wait and see tbh, as the waiting lists for diagnosis can be ridiculously long, and with current government cannot see this improving any time soon. But if you do wait and see, make sure that, even if it's just in your head, there's a firm review date, rather than letting things drift. Waiting till the end of the year can so easily drift into seeing how he settles into year 1, etc.

Name-changed for this as last nickname (plus personal details I might give here) would be identifiable. I don't post much anyway but am a long-term lurker. Have come out of lurking to post here.

Thank you all soooo much for this thread, especially fuzzpig. I also think I probably have Asperger's; but have not sought a formal diagnosis.
RDOS test: Aspie score 120/200 and neurotypical score 94/200, so "traits of both".
AQ score 37.

There are so many things here I can identify with, including some things I hadn't realised might be aspie-associated. Like some of you, I also work for NHS, as well as for a university: clinical/scientific/academic work.

OnEdge: "withdrawn passive over-achiever": yup, is me.

Also the comment about reading books at the dinner table: growing up, I thought this was normal. It was certainly not discouraged (maybe kept me occupied?). Only realised this was regarded as rude as an adult.

Will post further but meantime thanks very much again. It's lovely to know (hope?) that this might be why I feel ill-at-ease so much of the time (other possibilities being, I guess, depression/anxiety) and to hear how others think and feel inside. All suggestions for coping strategies welcome...

I found this list of traits for females with Asperger's syndrome

help4aspergers.com/pb/wp_a58d4f6a/images/img244154ad237783e339.JPG

Hope it is useful, a lot of them describe me exactly

System - thank you so much for that link. There are about 3 that are very wrong for me, but the others are terrifyingly spot on.

Dylthan, do you belong to a union? I think it may be worth getting advice as I really think it is wrong that they are telling you to hide who you are.

System, I get random things repeating in my brain too. I will have a look at that link.

The evening went ok in the end, I was put in charge (I have the Safe Key! ) and probably annoyed people before they left by checking every little detail of what I had to do. It's things like this that make me want to tell people now rather than wait. Everyone is really nice but I worry they are feeling impatient with me or think I'm annoying.

Wow that list was scarily accurate.

Yes, I have known that list for quite a while. The stuff about fantasy novels for example - I spent my childhood in Narnia (in my head) to escape my miserable life!

I really want to say more. I feel like I want to talk all day about this. It is bizarre how something so new (because I only recently discovered I'm an Aspie) can seem so old and familiar... How something so massively life changing, an answer to my whole life, can be so instantly right and comforting.

I really wish I could be normal sometimes. The event was really small and people were just speaking out loud when the panel invited questions. I could never do that. I put my hand up (heart racing) but got missed because somebody else spoke. The panellists were really lovely and actually asked after the event so I still got to ask my question (with much stuttering and blushing). The fact they'd noticed me meant a lot.

I can be kinder to myself now that I understand why I find that hard, but at the same time I now am hyper aware of all these symptoms and I really resent them. I wish I didn't struggle with something that comes so easily to most people.

Yes I want to talk about it a lot too at the moment. It is starting to become an obsession for me and I could talk for hours about it if I didn't have such a problem with speaking to people. the truth is that this is the only place I have been able to say any of this stuff, but still it doesn't feel like enough. My head is so full with it all it feels like it about to explode and because I have no way of letting it out, it is making me feel like I'm going mad. I really wish I was normal too.

Did that quiz. Got 153 and 58.

I am glad I told my managers (although the other deputy never did mention it) but after conversations I always obsessively repeat them and worry about the things I forgot to say, it feels like a whole other conversation is burning my brain unless I get to have it with someone.

System I have just read that list and that is a full on description of me that is eerily accurate. I have wondered whether the standard AS tests are actually fit to diagnose females simply because for so long it was believed to be a male only syndrome. That list was a 100% fit for me, but some of the standard descriptions for AS don't match me anything like so well.

I too am obsessing (typically!) about this most of every day right now. It's reassuring to read of others doing exactly the same.

Dlythan was getting a dx easy? Did you just ask the GP? I'm stressing about whether or not to go and ask. I know my family would just think I'm being stupid to even consider I have this, and I don't know if it matters to have it 'official' or just to leave it at a self-diagnosis.

I'm so glad about this thread!!

I also think you should not be required to keep a diagnosis a secret. It sounds really wrong to me. You have info which would ease your relationships at work so why wouldn't it be shared?

I suppose the thing about work is because of potential stigma and people not understanding the condition

But they'll already know her. Maybe I am naive or I just am lucky enough to work with really lovely people but I don't expect people to suddenly hate me because I tell them I'm an Aspie. She shouldn't have to hide who she is, especially when it has taken her so long to find out (sorry - not arguing just feel very angry on Dyl's behalf)

I wanted to ask - as children/teens, did any of you find yourself getting on better with adults than your peers? I've been thinking about this today because there were rowdy teens around at work - I always have got on better with adults, especially teachers. I was a bit of a teachers pet. It was a very strange mix of being more on a par with them (in terms of cultural taste and other things - can't really put my finger on it but I was very mature in some ways) and craving their approval - though the latter was probably more to do with abuse/parent issues than AS.

I still feel like it now though. I want to be on the same level as my bosses and yet to be mothered by them. Fucked up.

Yes, I also got on better with younger children than my peers did, and than I did with my peers. I think it was because I remembered very clearly what it was like to be their age.

Also there's that thing, mentioned in some of the lists, that people with AS tend to see all folk as equal. Hence my difficulties with people in authority who couldn't see I was right my POV

I agee fuzzpig but it is a sad truth that there is still a lot of stigma (although I experienced it through my diagnosis of bi-polar, which I think is incorrect), and ignorance. I have started explaining my face blindness to people, and you can see they can't quite believe it.

I would say I was like that fuzzpig. Definitely a teachers pet, but in a quiet way. And the need for approval was there. It was a safe arena to engage with others for positive feelings, where with my parents and family all I got was a wall of rejection and negativity about myself as a person. And I recognise the need to be mothered too. For me it always was from people who made me feel safe, who seemed to 'get' me, and I would end up avoiding them because it would all get too intense and messed up in my head!

My DP has agreed that System's description fits me very clearly. But I have also very clearly developed extremely successful strategies to mask it all, so much so that I frequently get to a state of 'flow' and think I've cracked it for good, and then I feel such a failure when I reach overload and have another meltdown. It would be a relief to stop thinking 'that is how you are supposed to be, what's wrong with you?'.

I feel I dance and spin and perform over the abyss. Or like one of those plate-spinners with all the poles. But all I'm trying to keep going is normal stuff no one else gives a second thought to. No wonder I'm always exhausted.

hi victoria, how do you feel about the score, does it confirm what you've suspected, are you fussed about getting a diagnosis.

I suppose re:dylth, I think it's fair enough to strongly advise someone to be wary of disclosing, but not to outright forbid.

yes and no to adults - superficially I presented as mature due to my vocab/interests, but if I didn't feel comfortable with peoples parents then I wouldn't talk much to them iyswim. have to say most of my better memories of school are of my favourite teachers.

I can't do things like the housework on 'automatic' - it's like I have to work my own controls, iyswim. Tis tiring.

Yes, nothing is automatic really, especially stuff like self care.

I really feel like I can't cope ATM although I am putting on a really good front at work. A lot of the time I feel happy and then suddenly the fear hits me, briefly, until I'm ok again. I wish I wasn't so good at pretending. I don't even mean to do it.

Been thinking this morning (can't remember exactly why, my brain was doing that flitting-about thing) about how I'm really malleable. Despite being quite set in my ways IYSWIM.

I think I got so good at copying what other people did to fit in that now I can't stop and I don't even know who I am.

I still DO get on better with those older than me, and indeed those younger than me (probably because of my inherently childish nature), than my peers. When the kids were younger, we ended up having a mud fight at the park, and some teenagers joined in too. We had a fantastic time, although we ended up completely covered in mud. I remember some parents looking on disapprovingly and some other kids wanting to join in but not being allowed to .

As for people treating me differently since diagnosis. Yes, that has happened. I've had my judgement questioned on more than one occasion, and without any other reason other than I am aspie and they thought I'd read the situation incorrectly. Yet to this day, I don't believe I did!

Shit. :(

Have had a voicemail from GP saying they need to discuss my referral. That was it. Phoned back but she was busy and according to receptionist will probably not get back to me until Tuesday. Am gutted. More uncertainty.

I have to admit in a way that I don't care about diagnosis anymore. Maybe I could be somebody who is happy with self diagnosis. But then maybe not. I'm not sure I could tell colleagues, uni etc without having something official to back me up. I might feel guilty.

I am scared that she is phoning me because they rejected her referral. I know it's really hard to get appointments. What if people don't believe me because I don't have an official diagnosis?

I have also been thinking a lot about what some of you have said, about acting normal. It is really exhausting me today but the problem is I don't even mean to do it. I also find that the higher I go when 'acting', the further I fall straight afterwards. I can have a laugh with colleagues and then instantly feel terrible after while the rest of them enjoy the remnants of the fun. The drop between the two is frightening.

Nobody around tonight?

Anyway. GP phoned and it turns out that my referral has been rejected - but because of my location. They only accept referrals from their PCT. So she is only going to refer to the local psychiatrists, who aren't specialists in autism. I'm not sure how I feel about that. I am relieved though as I now don't have to go to the hospital I spent time in. But it means more delay, more time hanging over my head.

Tonight was quite good, had an event as the finale to a festival. Had the usual paranoia about what people thought of me - the community team are quite close knit so I felt like an outsider but I did get a hug as a thank you for working hard (and another from the guest attending the event - she was so nice!)

How do you all cope with hugs? I've read that often Aspies don't like lighter touch and prefer firmer contact. This I can relate to. I like hugs where I know they are coming and I know they are genuine. I think because I prefer a firmer hug I probably sometimes hug a bit too much. It's a shame because it can spoil my enjoyment of the hug.

I can manage hugs, am quite huggy in the first place, if it's someone I don't like I go all tense though, but of course this rarely happens.

Kisses into the air on one or each side of the face? Aaargh! I always end up kissing the actual cheek and realising I've got it wrong!

May I ask what you were in hospital for?