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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

fuzzpig Thu 22-Mar-12 19:23:05

WTF system? Why did she say you have dyslexia? I guess because of the processing issues... plus assuming this is someone working where you study they are more attuned to looking out for stuff like that rather than ASD.

Can you write on the bit of paper "I don't think I have dyslexia, I think I am on the autistic spectrum" and give that in instead? (seriously)

SystemofaDowny Thu 22-Mar-12 21:06:24

Is the university counselor, my tutor referred me because when I missed assignment deadlines I had to get a letter from the doctor explaining why. the doctor had put I was depressed and on anti-depressants so she probably though I was suicidal and about to jump out the 6th floor window.

I haven't told her anything about ASD only things about the problems I have with writing and talking related to my course., although she has been asking some other random questions- today she asked if I was a mind reader! I've said I definitely don't think I have dyslexia but I will go to the appointment just so I can get proof. I will be writing that I do not think I have it on the paper and maybe just write down the problems I do have with writing so I don't have to go through the effort of explaining it all again to another person.

fuzzpig Thu 22-Mar-12 21:48:41

I hope they listen to you system and can at least help you go elsewhere to get the help you need. I think it's interesting she asked if you were a mind reader! You've made a big step talking to your counsellor and hopefully that will continue at a pace you're comfortable with. It's so hard being in limbo.

MarynotBeSarcastic Fri 23-Mar-12 08:01:21

Depression is commonly diagnosed for people with Asperger Syndrome. I gave up going to the Drs when I felt low, because I instinctively felt it wasn't depression (this was before I was diagnosed). Not only that, the medication I was put on made me feel weird and zombielike and didn't seem to be working right, even on low doses. Now there seems to be some evidence to suggest that sometimes we need different medication from that generally prescribed. But I prefer other methods like meditation, if I can. Or read a book grin

And fuzzpig, you don't sound needy and pathetic!

Codandchops Fri 23-Mar-12 08:05:31

It's good to find this thread.

I am Mum to a 9 yr old DS who is ASD/ADHD and "not unlike you as a child" according to my Mum.

I have always known I was "different" from other people and have struggled throughout life with friendships etc. I have friends but few who I allow in real close. I find trust very difficult.

My GP won't refer me because she says the diagnosis is immaterial due to me now being in my 40s and having achieved really well in life (I am a nurse, midwife and health visitor with a degree in public health). This does not take away the feelings of difference though.

I suspect ADHD and either Aspergers or autistic traits. I was bullied massively at school because I could not fit in.

SystemofaDowny Fri 23-Mar-12 11:17:11

I am not depressed. I don't feel at all like the way depression is described. I do have some of the symptoms, but they are caused by different things and not decreased amounts of serotonin. Sometimes it is just easier to agree with the doctor so you can get out of the door quicker.

fuzzpig Fri 23-Mar-12 11:30:51

Hi Codandchops smile

It's a shame you didn't get referred, some people on my previous thread said that happens a lot as an adult. Do you want a dx or are you happy knowing 'unofficially'?

fuzzpig Fri 23-Mar-12 11:33:49

I understand system except I always felt I was depressed - because that's what people had told me, and I believed them. When my symptoms first really showed (everything was hidden before) and I started self harming age 14, I was treated for depression because I had just told about abuse that happened as a child. So depression was the obvious answer. Since then I just figured that it must still be depression. And I felt like a total failure because none of the treatments were working.

JarethTheGoblinKing Fri 23-Mar-12 12:00:40

This is something I've been wondering about recently - the test says I have NT and Aspie traits and I'm now confused

I did get a low group score relate to social phobia, ASC and a high score related to OCD though.

I feel like a fraud if I went to the GP to be referred for testing though confused

MarynotBeSarcastic Fri 23-Mar-12 12:55:23

I can't remember if I said, I was put on tranquillisers (Ativan) when I was about 14, which didn't help, just made me feel more anxious than ever.

I feel completely overwhelmed when things are going badly and fine when things have resolved themselves. My "depression" was caused by the things going badly or confusion or lack of certainty and clarity.

Jareth there is often an overlap between conditions, with certain distinguishing features which "place" you in a diagnosis. They can also co-exist, I would say I was dyspraxic as well as Aspie. Check out the Wrong Planet forums, it might help you figure out where you are.

I really wanted a diagnosis, the uncertainty really got me down, in the time between my son being diagnosed and myself.

JarethTheGoblinKing Fri 23-Mar-12 13:28:59

Thanks for replying Mary - I'll have a look at the forums when I'm not at work.

I've definitely got traits and the OCD score doesn't surprise me. One thing I've really noticed is that it seems much worse in the last year since coming off citalopram - Only just made that link today blush

Hmm.. interesting.

Codandchops Fri 23-Mar-12 13:35:21

Hi fuzzpig, I think now I am happy that I know unofficially why I struggle at times. It helps me accept myself better for who I am.

Did anyone see the programme "For Better for Worse" where they followed several couple before and after marriage?
One of those couples went on to have 3 children and at least one has ASD/ADHD and once he was diagnosed it opened the Dad's eyes to why HE struggled so much in life with feelings and emotions.

I have long term depression but am coping at the moment.

I am out of work now because it's far easier to meet DS's needs (and my own as I am chaotic) while not working. It means I am facing a year or so on benefits but hey ho! I do have the offer of ad-hoc work which I heard about this week so that's good.

Codandchops Fri 23-Mar-12 13:36:29

I would add that I am also Dyspraxic (or have shades of) - am very clumsy and chaotic. Standing joke at work - finest moment was falling out of a clients house as a health visitor grinblush

fuzzpig Fri 23-Mar-12 15:30:29

Hi Jareth smile don't feel like a fraud! No matter what 'category' you fit into you are welcome here among people who struggle with similar things. This thread is helping me already and I hope it will help others too.

I can relate to both sides of the diagnosis thing - I do feel better already (especially now the shock has worn off a bit), and I can be nicer to myself. I'm understanding the things I do and already that means they don't bother me as much - things like dwelling on what somebody says. I can tell myself "you are only doing this because that's the way your brain works" and it suddenly loses power over me. I am being more open about my feelings because I'm not so embarrassed about them.

OTOH I am really struggling with the not knowing, the worry about the assessment and the fact I would like to be even more open (eg with colleagues as well as my managers) but having a dx to back me up.

SystemofaDowny Fri 23-Mar-12 23:00:07

OK maybe I'm not understanding it properly. One of the symptoms given for depression is 'low mood' I have no idea what this actually means. Low is a word to describe the position of an object. I don't know how it can be used to describe feelings too. It just doesn't make sense to me but maybe that is because I'm not normal.

fuzzpig Sat 24-Mar-12 06:54:38

The reason you don't understand it is because you take words literally smile do you often find yourself not 'getting' jokes? I do. I love shows like Family Guy and Futurama but often in RL I find myself sitting there thinking "WTF is everyone laughing at". I never tell jokes or even funny stories, I just can't do it. I have always been jealous of people having anecdotes to tell. I have none whatsoever. I never know what to say.

I think I am still depressed - certainly feel bad a lot of the time. But it is quite an adjustment to make as I now feel like depression is a symptom - caused by AS and the resulting behaviours that upset me - rather than the cause (ie by brain chemistry or circumstance) of all my problems. It's all gone on its head. It's all very complicated ATM though, as circumstances at home are shit, everything is going wrong at once, and I get upset about that too. I often find myself thinking "why can't we just have something GOOD happen for once".

SystemofaDowny Mon 26-Mar-12 09:07:50

I have got my second try at talking to the doctor this morning. I hope I can do better than last week. I hate not being able to talk to people.

MarynotBeSarcastic Mon 26-Mar-12 10:19:44

SystemofaDowny, hope it goes OK. If you need a bit of time to get it out, then tell the Dr you're finding it hard to explain, and then hopefully they'll be patient with you.

Fuzzpig, I am a very sarcastic person, and I see humour in lots of things, mostly puns and the humour of taking things too literally. (I've given up sarcasm for Lent, hence my MN nickname). Occasionally though I can't tell when people are joking and take what they say seriously, or the other way round, I think someone is joking and they're being serious. Either way can get me into trouble!

I've had a busy weekend, we went to Legoland on Saturday, just me and the kids as DH pulled out at the last minute. Ended up absolutely exhausted and barely able to function, but we still had a good time (spending nearly an hour trying to get out of the car park, due to the gridlocked roads doesn't help my stress levels). Spent Sunday recovering.

fuzzpig Mon 26-Mar-12 10:29:41

Good luck system smile

I had a good weekend too but got in to work today to find out there's a D&V bug doing the rounds. Am now terrified (emetophobe) not least because I am a bridesmaid at my best friend's wedding on Saturday!

SystemofaDowny Mon 26-Mar-12 10:48:44

thank you. I have been trying to plan what to say, but the more I think about it the more worried I get. i have been trying to think what questions she might ask so I can prepare answers, but I really don't know. She said last week she was going to read back through my notes. I can't remember why she said that or if there was a reason for it.

MarynotBeSarcastic Mon 26-Mar-12 11:15:52

I'm not sure you can prepare that much by having answers ready. You can think about why you want the diagnosis and why you think you have Aspergers, but that might be better off written down.

When I saw my Dr, I told her that I thought I had Aspergers, and that the reason was that when my son was diagnosed, I recognised myself in his diagnosis. She didn't ask any more questions, just that she would refer me to a specialist for diagnosis.

SystemofaDowny Mon 26-Mar-12 11:23:42

Unless I plan what to say I usually end up not being able to say anything. even just starting the conversation is really difficult. Random questions that I'm not expecting are the worst thing because I panic about knowing how to answer.

MarynotBeSarcastic Mon 26-Mar-12 12:12:48

I'm the same with questions, and I try really hard to ensure I cover all eventualities. Not very easy though, and I generally panic! I also manage to think up some pretty scary "worst case scenarios", which doesn't help, because I try to think up how to respond to those too!

grammar Mon 26-Mar-12 13:01:08

After 15 years of knowing something wasn't quite right, my daughter is about to be assessed next week. In the meantime, we've both been reading up on it. (She self-diagnosed after reading the dog in the nightime book).

There have been moments of sadness, regret and hilarity in the last week or so. Regret that she wan't diagnosed earlier (we sought out Camhs (child and adolescent mental health) when she was 8 for severe anxiety problems, also she was selectively mute until 7.

I feel upset at all the times I have accused her of being 'obtuse', unkind, egocentric etc..

She feels that alot of the characteristics of Asperger's were, what she thought, her own individuality, ie special interests, Titanic when she was 9, obsession with Japan and Manga art and just her pedantism (need to correct others). The danger is she now feels like a 'syndrome' not an individual. However, it is enormously common; I am hoping we can get her the help with it that she needs to enable her to navigate the future with optimism rather than the sometimes overwhelmingly negative attitudes. She is also depressed, doing her GCSE's and grappling hormones. My heart just goes out to her.

Have any of you read the Tony Attwood Book on Asperger's? It is very 'enlightening'.

Thank you for this thread. At the moment I'm swinging between worrying she will not be alive in 10 years time (the depression is quite bad) and relief that at last we've found our way into a system that could help her.

Best of luck to fuzzpig and system and all others, thinking of you.

fuzzpig Mon 26-Mar-12 15:14:58

I think it's understandable that it's been missed. I can't deny I feel resentful that it was not picked up earlier, but I am coming to terms with it. It is very common for AS to be diagnosed very late because sufferers often learn to hide everything and pass for quirky. And of course awareness even 5 years ago was nowhere near how it is today.

It's funny, that Curious Incident book - I read it when it first came out and remember thinking the character seemed quite normal grin I've reserved the Tony Attwood book too.

At work some colleagues were talking about some possible volunteers with ASDs and they were saying how often they make good volunteers because of liking the order and structure that goes with a library. I had a quiet giggle to myself smile

Thinking of you System, I really hope it's ok today. I expect the doctor was going to look through your files to get some clues about why you were so nervous about talking - that is definitely a good thing! It really sounds like she cares and even if you didn't manage to say what's wrong today, I have a feeling she will soon draw it out of you - just keep trying.

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