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. :)

Thanks TLP :)

Also got my manager visiting (in my house! That is scary! Hardly anyone is allowed in my house) tomorrow as I'm being referred to occupational health. Bit nervous as my paranoia is going into overdrive about what's going to happen - but I'm glad the doctor is taking my illness seriously so hopefully my colleagues will too. Whatever is physically wrong with me, it's another invisible problem, just like Aspergers. I hate feeling like people think I'm lying - when you can't 'mind read' like regular people how are you supposed to know what they think?!

Hope everyone else is ok. :) x

gosh that does sound daunting, having your manager visit, but from what you have said previous he/she sounds supportive, so hopefully it won't be too bad an experience

It was actually fine! She's really nice and has a friend who was diagnosed with AS age 48 - I actually just finished reading her self-published autobiography so we chatted about that too. It isn't as scary as I thought, she was very clear about the reasons for the procedure and it really is just about getting me back to work safely. She reassured me that lots of other people have been through it too.

I managed to ask a few questions about hypothetical situations - I think an overly logical Aspie mind is prone to seeing all the possibilities and therefore fretting about each of them! Or is that just me?! :o

I am trying really hard not to think about the results as it is 6 days until I can discuss the results, and even then I'm not sure if we will have an answer (the nurse taking my blood had lost one of the forms...) or if I will need more tests. Doctor did seem to be leaning towards CFS though, the 'ruling out other things' is more of a formality.

I just want to know what's happening. This seems like forever even though it's actually incredibly quick (I know people who have really struggled to get listened to let alone get a dx of CFS). I want a plan. There are very structured therapies available which are controversial (graded exercise) but I think they would suit me. I feel really restless and I wish I could just write lists like I normally do but I can't because I don't know what's happening!

Barely even thinking about the Aspie assessment but when I do I get really nervous! I've convinced myself they will read my previous history and just assume my problems are all because of abuse. They aren't. I'm sure they aren't.

I think I am gate crashing here, but I scored 81 (aspergers) 120 ( neurotypical). I didn't do the quiz out of idle curiosity but to try and make sense of why I
Seem to be at odds with colleagues and managers at work. I always seem to be out of the loop with office news/gossip, and I have been accused of being too blunt. I am also struggling a lot with learning processes in my job. Icant cope with 'hot desking' at all. Funny thing is, I work in a caring profession where I high degree of empathy is required, and I do this well, because I am focussing totally on the individual in front of me and I really do care about doing the best for them.
I have also made a shit job of being a parent.
Any ideas anyone?

hello brightspark - I can really relate to your plight at work - I am also in a caring profession, but low level admin role, and am having to hot desk recently, which I also hate, as I am having to use other people's established desks, so am v conscious of not spilling crumbs on their keyboard, having to work around their paperwork!

speaking in sweeping generalities, it makes absolute sense that someone with aspie traits would have bagfuls of empathy with patients (strong sense of social justice etc) but would find the whole office politics malarkey daunting, as it's not based on logic/fairness. I manage by steering clear of bitching/negativity as far as possible, and hoping my colleagues appreciate that as I am not slagging off others, I wouldn't slag them off! Sorry, I know that keeping your head down and not getting involved isn't a v inspiring solution but it mostly works for me, and if I miss out on gossip, so be it!

In terms of work processes, what is the particular issue, maybe we can help you with this?

Fuzzpig chronic fatigue and chronic pain conditions are very closely linked to autism. They are thought the be the physical manifestations of autism. I have fibromyalgia, which my physio says is becuase I have hyperflexibility, which is because I have autism. Also these conditions are linked to sleep problems, which are also linked to autism.

Brightspark1 Do the AQ test if you think you may have Asperger's. It's the shortest test but it's also the most researched and is about as accurate as any test could be. The false results rate is something like 3% (can't remember the exact figure).

Welcome brightspark, not hate crashing at all, I hope anyone can find this thread as helpful as I have. The AQ test was the first one I took and from what I've heard doctors take it more seriously than other online tests.

Hey kladdkaka, glad to see you back again. Saw your other thread about the application for support. I hope it gets sorted out

I'd forgotten, if you'd mentioned it before, that you have fibromyalgia. I think mine is more likely to be CFS but I have been looking into both a bit, as well as other things that were suggested. It's all very scary isn't it. How do you cope with your symptoms?

I'm not entirely surprised by what you said about the link between the two. I've been lurking/posting on some threads for a while, and kept seeing some links about mitochondrial problems being implicated in both ME and autism. I haven't read anything about it though as I struggle with reading stuff like that at the best of times, let alone when I can barely sit up. Jeez for a supposedly intelligent person I don't half feel stupid sometimes :(

It's weird - for the last year I've been feeling like both the emotional/behavioural problems have been getting worse alongside the physical ones. How long before everything gets even worse? And is there any way back?

/end self pitying rant

Tried the AQ test and scored 19, so back to the drawing board I suppose. Thanks for your interests and comments though. Just wondering whether the problems people have described with fatigue can be explained by the sheer effort it takes to 'act normal ( or NT) and function on an every day level. It's not to say I'm minimising how it must feel though.

Yes - the fatigue from pretending is massive! I actually think that if I'd taken the test a few years ago I wouldn't have got the same results. I was at home all the time with my DCs and didn't need to pretend, whereas when I started work I had to act all the time. Keeping up my defences was utterly exhausting. Gradually they started to wear down and I think that's what made me start to wonder WTF is wrong with me. It got harder and harder to pretend. I do think I have a physical illness and I'm glad my doctor is taking it very seriously (he could easily have put it down to stress) but certainly mental exhaustion does contribute to my symptoms.

FWIW I've heard females are under diagnosed compared to males precisely because they find it easier to pretend and blend in, internalising their problems. Rings true with me anyway.

Even if you're not an Aspie we aren't going to chuck you off the thread so do keep posting if there's any more you want to talk about :)

Don't forget Brightspark, that you can have some aspie traits very strongly but don't qualify for diagnosis because there are others that you are fine with.

Thank you, my daughter has dyspraxia, and it may be that I am too. From what I have read on this thread there seems to be some overlap. Certainly in my lack of spatial awareness which came out in the multi tasking organisation aspects of the quiz would fit in with dyspraxia as well. I just thought that I would grow out of the awkwardness of my youth and magically find a poise and confidence that eluded me. If anything I seem to be getting worse not better but that maybe because my DD has had serious MH issues over the last year and i recently left a job due to bullying, so my behaviour and ability to do things have been under the microscope a bit.

Hi fuzzpig sorry you are finding things so difficult at the moment.

I was diagnosed with cfs when I was 13 but now with hindsight and a diagnoses of As I really think it was the As that left me feeling so drained and sore.

I still get the same symptoms when I am stressed or having to deal with lots of social situations.

When I first did the AQ several years ago, I was around the borderline (low to mid thirties) but since I have become a lot more informed about AS, my score has gone lower, so I don't know whether age and even hanging around on forums like these has made me more aware of the more usual social responses iyswim.

Kladd - are you aware of any link between AS and sensitivity to 1)caffeine or 2)changes in weather, particularly humidity? Humidity seems to be a trigger for back pain, pain down front of my legs and various twinges. On a bad day I will be limping up the stairs. I don't think it's fibro as overall exercise seems to help.

Maybe the weather thing is to do with sensory issues? I certainly feel things more than others and weather is a big example.

I am excruciatingly sensitive to caffeine. I don't like tea or coffee but have to avoid my beloved Pepsi Max most of the time. I don't understand how people can drink tea and coffee all day, but I guess they become tolerant to it. I'm sensitive to alcohol too, but again that could just be because I hardly drink it (can't stand wine or beer so quite limited) and haven't built up a tolerance to it. No idea of either of those things are related to AS though!

I drink a fair amount of caffeine, almost I think abuse it - like when I had to make a lot of phone calls at work, I made sure to drink coffee beforehand, as it makes more more talkative.

glad your home visit was fine, Fuzzpig.

Reading a novel ATM (the boy who fell to earth) about a mum with a son who has AS, really liked this quote:

"it keeps going round and round in my head, what those bullies said to me" [...] "if the body's designed to vomit up anything contaminated, why not the brain? Why can't my brain throw up?"

I so understand that! Why is it that I can barely hold onto a thought these days and yet I remember every bad thing that happens :(

Kladd - are you aware of any link between AS and sensitivity to 1)caffeine or 2)changes in weather, particularly humidity? Humidity seems to be a trigger for back pain, pain down front of my legs and various twinges. On a bad day I will be limping up the stairs. I don't think it's fibro as overall exercise seems to help.

We're hypersensitive so anything which affects any of the senses is potentially damaging. I get my AS from my mum, although she doesn't have a diagnosis. She is completely debilitated by humidity. I'm not so bad but I do struggle with any sort of heat. Summer is an ordeal for me and I've never understood why people disappear off to even hotter countries.

I went through a few months of being really poorly at weekends only. Couldn't figure it out until I caught my husband making the coffee and putting twice as much coffee in the machine. Reduced the amount and the problem disappeared. So I certainly have issues with caffeine.

Does anyone know anything about the XMRV virus thing? That was found to be startlingly common in both CFS sufferers and autistic children, but that was a couple of years ago now so I don't know what happened with it.

So while we're on the topic of sensory problems, what issues do you all have? As well as heat/humidity my main one is noise. Sometimes it can be ok, I used to actually manage ok at rock gigs. It's more a mix of noises that get me worked up. Say, music and tv at the same time, it makes me anxious and angry scarily quickly. I am comforted by some smells and tend to sniff certain things compulsively especially when I'm stressed.

I have the tv on constantly. I can't stand quiet, it freaks me out totally.

I have touch issues. I only wear certain fabrics and I want to cry when I have to wear suncream. Tap me on the shoulder and it feels like I've been stabbed. It also affects my food, I get hooked on certain foods depending on how it feels in my mouth.

I'm becoming increasingly sensitive to sunlight. My eyes get sore and I come out in a rash.

Nooo I love quiet! :o sometimes I need some DVD on in the background (if my mind is racing or I'm in pain it's the best distraction) but I do like silence sometimes.

Touch is a big one, it's weird that there is a prevailing stereotype that people with ASDs can't stand any touch at all, when for many it's not true. I crave touch, but it has to be firm, proper hugs rather than a gentle touch on the shoulder. It also makes me very anxious if not on my terms. A couple of times now a colleague has put their arm round me when I've been upset, but obviously been a bit nervous of giving a proper hug, but the 'halfheartedness' of it (IYSWIM - I know the sentiment is sincere) totally creeps me out and I end up shying away even though I really need a hug more than ever!

That's not the prevailing stereotype. Firm touch vs light touch has been thoroughly researched in regards to autism. That is Temple Grandin's area of expertise. Weighted blankets, weighted jackets and lap covers, firm massage, tight hugs etc are all well established autism interventions.

Not among experts, no. But IME people that don't know about autism still think that - I know a lot of people who think autism = not wanting to be touched :( it just takes a long time for expertise to filter down to the public I guess.

Oh another thing that I really struggle with is incessant talking I am mostly referring to DH here - sometimes I am just TOO tired and I cannot stand anyone talking, it wears me out so bloody fast. This has got a lot worse lately but I don't know if that's a physical thing due to being ill. Everything makes my ears hurt.

Just remembered another massive one! You know the feeling of crockery (especially glasses) when they come out of a dishwasher? They're kind of extra dry and feel weird. It makes me want to run away and when I empty the one at work (don't have one at home) I have to slather my hands in lotion after. It seems really irrational but I can't stand it.

Unfortunately (and this is what reminded me) the special bath oil DS has for his eczema has exactly the same effect on me :(