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Support thread - adults on the Autistic Spectrum :)

717 replies

fuzzpig · 16/03/2012 08:41

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. :)

OP posts:
TheLightPassenger · 25/04/2012 17:17

fuzz - I've had about 8 years to get my head round all this, so I am v chilled about it mostly, but when it first hits you, that you might be on the spectrum, it does affect you deeply.

mary - yes I like A friend like Henry, as it shows the long haul aspect of parenting a child with social/communication issues, that although the dog was a massive help in getting the lad to communicate, it wasn't a miracle cure,

devil - hope the weekend goes well.

system - wow, that sounds thorough, hopefully you found the format of the tests more helpful than a q & a conversation

Kladdkaka · 25/04/2012 18:00

I've been at habilitering (health service for autism) for 5 hours today and am utterly knackered. They've finally got round to explaining how the system here works and what help and support I can get and how to apply for it. I'm very excited and feel quite positive about the future. If I manage to get even half of the support that's available, I'll be a very happy bunny. :o

SystemofaDowny · 25/04/2012 18:31

After 5 hours I would have been curled up on the floor crying, but it is good you are getting support that you need. Is that a normal thing in Sweden because I don't think that it is like that in the UK?

Kladdkaka · 25/04/2012 18:43

I confess that I did have a cry partway through when it all got a bit overwealming. Break and a cuppa sorted me out again for the next stint.

Yes it's normal in Sweden. We have child habilitering and adult habilitering. It's a one stop shop for conditions from birth (as opposed to rehabilitering which is for ones you aquire along the way).

The actual support services are mostly provided by various other agencies but habilitering steer you through it all. So they will be making all the phone calls and come with me to all the appointments with social services, LSS (council disability services), job centre, county court, student financing, DSS, county dental board and ... SUPPORT ANIMAL SERVICES!!!!!!! They're going to see about getting my bubba (pic of profile) upgraded to the status of assistance dog. That's the bit that made me cry and that I'm all excited about. :o

fuzzpig · 25/04/2012 22:10

That sounds amazing kladdkaka Envy :)

I ordered that 'look me in the eye' book. I also found one called Aspergers, the universe and everything, which was by a child. Lots of biography type things to look through, don't know if I'll actually read them though as I don't often read that type of book.

Today was good as I got lots of alone time. It was a bit trickier in the evening as Wednesday is youth club so lots of rowdy teens! It gets very noisy and sets me on edge. I did meet somebody who is going to be on my next OU course though, hopefully we will be in the same tutor group. As soon as I said I was on the same one I flushed really red because she and my colleague both looked at me and that always makes me blush really badly. I hate that.

Work again tomorrow, I have to see my manager so I am going to attempt to bring up how hard I found Saturday, if I can work the conversation that way.

OP posts:
Kladdkaka · 25/04/2012 22:14

What are you studying at the OU?

fuzzpig · 26/04/2012 10:30

I'm doing ed209 (child development). In sept I'm doing children's literature which I'm really excited about. Just doing an open degree and it's a real struggle now but I'm determined to graduate eventually!

OP posts:
Kladdkaka · 26/04/2012 10:37

Same here. I've been to regular university twice before but couldn't cope and ending up dropping out. I'm in my second year with the OU. It's easier this time as I have my own personal tutor on tap 24/7 (my husband).

Habanera · 26/04/2012 11:51

I'm dropping in to say hello after a long lurk, I have no formal diagnosis but I know I and DD2 qualify-no doubt there. Maybe DD1 too but she makes more effort to appear NT.

I just wanted to ask can anyone explain processing issues for me, what are they and how does it affect you? Is it sort of like taking a long time to get or do some things, but they come out well when you finish, if you ever do? Or more like going blank, like math phobia-if you can keep your head you can do it fine but more often than not you freeze?

Anyway my best wishes for everyone in their daily struggles-you are not alone and that's a fact. Smile

Kladdkaka · 26/04/2012 12:50

'Processing issues' can mean 2 things, Executive Function deficit and/or Weak Central Coherence.

Executive function covers 4 main areas: planning, inhibition, generativity and mental flexibility. Take the example of cooking dinner:

Someone with a planning deficit will struggle to sort out all of the steps necessary and follow them through to completion. They struggle to sort out in their head that they need to shop, decide a menu, prepare the food, lay the table etc. For some they may cope fine with the high level stuff but just have problems following the recipe. Or they may cope with all the steps individually but can't cope with them all together. Others need even simple tasks, like laying the table broken down into much smaller chunks. Eg 1. take the table cloth out of the cupboard, 2. spread it over the table, 3. get out 4 placemats etc

Inhibition deficit would be that they go to do their shopping but get distracted by the cake counter or spend hours reading the magazines. Or go off and loose themselves in something else and forget that the food is in the oven until it's on fire (my daughter is particularly skilled at creating fires this way). Also things like loudly asking questions during the film at the cinema.

Generativity deficit would mean that your mind is blank when thinking about what to make for dinner. You want something different but you just can't come up with anything new. So you have beans on toast. Again. As you do pretty much every night.

Mental flexibility deficit would mean you can't move easily from one task to another. So you would have problems coping with leaving the vegetables half peeled while you check the pie is ok in the oven. And if someone were to knock on your door half way though, your brain might explode.

Weak Central Coherence is where autistic people can see things in much greater detail than others but have problems with seeing the broader picture. I have this problem. Someone else might clean their living room in an hour. They see the broader picture, so clear away the clutter, flick the duster round, quick vac, job done. I am so focused on the detail that I spend that hour dusting the mantle piece and making sure everything is back EXACTLY where it came from. Therefore it takes me 2 days to clean my living room. Alternatively I sometimes can't follow what is happening in a film or book. I can see details that others don't (can't bear it sometimes if the lips are a nanosecond out of sync with the audio) but I have trouble processing the immediate information to create general overview of what is happening.

Does that make sense? (In a waffley aspie way)

fuzzpig · 26/04/2012 13:01

Hi Habanera :)

I think processing issues are a sort of partner problem to ASD? Not so much a core part of it. It can mean a whole bunch of different problems I think

For me, I think I am probably hyperlexic. I was reading very early and was fluent and fast. But I cannot understand what I read. It just doesn't go in. I got by at school because I was good at picking out the answers to specific questions. I can read whole books without being able to describe the plot.

My other issue is with auditory processing, I think that is also known for accompanying ASD. I have issues with too much noise anyway but I really struggle with understanding speech. DH has to repeat things often. Or he will comment on something we've just heard on tv/radio and I won't have a clue what he means because although I heard the words I didn't get any meaning from them. I can't imagine using audiobooks. It's a wonder I got through school (top student, grammar school etc) but it's all come crashing round my ears now, I always thought I was clever but I feel more stupid every day.

Kladdkaka what course/degree are you doing? I am enjoying the child development one but the last assignment was really difficult, there was so much ambiguity and it threw NT people as well. I am really behind on the reading as it just doesn't sink in.

OP posts:
fuzzpig · 26/04/2012 13:06

Kladdkaka's explanation is much better than mine! Weak central coherence definitely rings a bell...

OP posts:
Kladdkaka · 26/04/2012 13:16

Fuzzpig, what you are describing in both your examples are Weak Central Coherence.

Weak Central Coherence and Executive Function deficit are not partner problems of ASD. They are a couple of the main psychologial explanations of the core problems of autism. The others being Theory of Mind, Hobson's Social Development Theory and Empathising-Systemising Theory (ES).

I'm aiming for a law degree, although that may be wishful thinking. I've done the level 1 60 point law module, which I really enjoyed even though it made my ears bleed. This year I'm doing the other allowed 60 points at level 1. I've just completed Understanding Autism and am part way through English For Academic Purposes and Contempory Wales. I'm hoping the English one will help me survive next year's level 2 law one.

ThePinkPussycat · 26/04/2012 13:38

I am hyperlexic, but the meaning goes in! I can study from books very quickly because of this. But there is a down side. I can't switch off reading! I get the auditory overload too, but see a word, in any orientation, and it goes straight in. I hate all advertising and t-shirts with words on because of this, and one time when it got very bad I had to turn all the shampoo bottles and things round so I couldn't read them.

devilinside · 26/04/2012 13:38

A lot of the processing stuff rings bells with me too. I always thought my inability to complete tasks / concentrate was because of ADHD/ADD, now I'm realising it's probably down to ASD.

I struggle to understand complex blocks of speech. DP knows he has to get to the point very quickly. With others I usually hide the fact I have not understood by just agreeing with them

SystemofaDowny · 26/04/2012 18:39

Kladdkaka the living room thing is the same as me, it takes me forever to clean plus I have 2 young kids so its always needed to be done same with the rest of the house. Also the part about breaking it down into smaller steps I have to do. i have to right it as a list with timings. Just writing that probably takes me more time than normal people would to just do the cleaning. Its the same with most things actually e.g I can't just do the washing as to me its not just 1 job, its lots like 1. sort different colours 2. load washing machine and switch on 3. put in dryer/hang on line 4. take out of dryer/off line 5. iron/fold 6.put away.
the whole thing just takes me so long especially if I get distracted by something else in between steps, but if I tried to explain this to people they would think I'm mad or not capable of looking after myself. I am its just harder for me than most people.

Kladdkaka · 26/04/2012 19:03

Yeah, that sounds like me. I read threads on here where people are asking 'what should my cleaner do in 2 hours'. Then everyone says what they can get done in that time and I'm like Shock. I couldn't get it done in a week.

SystemofaDowny · 26/04/2012 20:12

About the hyperlexia thing, i think I have that too. It sounds exactly like the problem i was explaining in the test i had yesteday. I could read all the words fine, and spell them quite well too, but when it came to the part where I had to explain what they meant I had difficulty. I did know what most of them meant, but translating it from a meaning in my head into words to speak out loud was almost impossible. Some like appl i could manage but other words like fortitude and audacious I couldn't explain even though I think I do understand them. The same thing happened in the general knowledge part for the question about Martin Luther King. I know who he was etc but couldn't turn that easily into words to explain within the time. she did actually understand all of this (the first person who ever has) and why this is part of the problems I am having with completing university assignments.

Kladdkaka · 26/04/2012 21:05

I'm a bit funny. I fully understand my university course materials but I can't turn them into assignment answers either. Strangely though, if someone asks me what the answer is, I can turn it into words. It's like the signals that go to my hands go like Confused. I try to speak my answers and then write them down, but it still just won't work. One of the things habilitering is going to do is sort me out with some magic software for my computer so I can talk my assignments and the computer will then turn what I say into words. (I'm such a technophobe, I'm still not convinced such a thing is possible Blush :o)

SystemofaDowny · 26/04/2012 21:39

It sounds like some kind of voice recognition software. I mean I can actually try to say something in answer ( if I am given enough time) but it would come out as random words not proper sentences with meaning e.g for the Martin Luther King question it would be something....man....american....black.....civil rights.....I have a dream.... That is why I found my recent exams so hard because they were long essay type questions which I find impossible yet in previous exams when it is multiple choice or short answer questions I get 90-100% everytime.

Have you heard of something called alexithymia? I have read about this since I started researching ASD. Its a difficulty in understanding and describing emotions, which I think I have too. i think it is also kind of linked to the other problems I described but talking about feelings is definitely way harder than anything else.

Kladdkaka · 26/04/2012 22:53

I didn't know the word but I definately know the problem. To me everything is either happy or angry. The rest I'm lost with. It's the same with a lot of physical feelings too. I can't properly recognise hungry, full, thirsty, pmt. The signals the body sends out just don't make sense until they get extreme. eg I can't tell when I'm thirsty so I don't drink anything other than my morning coffee for days. Then I get a brain crushing migraine and that's when I remember to drink.

fuzzpig · 27/04/2012 07:39

All this is so familiar. It is exhausting feeling and thinking all the time.

One problem with the housework etc is that I am a very 'all or nothing' person. No grey area just black and white. I can't just do part of a job but to think of it all at once is overwhelming so I never start. Same with things like self care and study.

I've also been wondering - though I understand if it's too difficult to talk about - about self harm. I read it's more common in Aspies. I guess usually it goes hand in hand with depression, but lots of people have depression without even considering hurting themselves - so why is it apparently more likely for Aspies? I self harmed for a few years in my teens - still have awful scars. It was like an addiction. It started after I told about the abuse but I feel I would've done it at some point anyway. It's been a real struggle not to do it lately.

OP posts:
Kladdkaka · 27/04/2012 08:38

I don't think self-harm does go hand in hand with depression in autism. I think the medical profession think this because that's what it looks like to them, as outsiders looking in. But as an insider looking out, I see it differently.

I spent half my life having anti-depressants pushed at me because of my 'depression' and suicidal thoughts. They never made an iota of difference. I now know that the problem is/was anxiety. Anxiety so extreme that it becomes unrecognisable as anxiety and looks more like depression. Depression is the bottom of a spiral where the body slows down and down till you can't move and you feel lower and lower and more and more hopeless.

Anxiety is the opposite, the body speeds up and you become more and more agitated and can't slow down and relax or sleep. But when anxiety reaches extreme levels it exhausts you so you can't move (ie get out of bed like with depression). You also get self-harm thoughts, not because of feeling hopeless and low, but just to make the flashing and banging and crashing and jumbling and chaos and noise going round and round and round in your head STOP!

ThePinkPussycat · 27/04/2012 10:03

fuzzzpig I was like that with the housework - and it stopped me doing anything else, so I was in a messy house not doing anything. I am a lot better now, used Flylady but highly adapted. Beware, one legacy I have is repetitive strain syndrome in my right arm, from when I did get started and had to scrape and rub layers of gunge off the cooker.

SystemofaDowny · 27/04/2012 10:13

Yes to the hungry/thirsty thing. I don't know what it feels like to be hungry. I only eat when it is a meal time. If I miss that time (like when i have late lectures) I don't eat until it gets to the the next meal time. Also something which has always confused me is pain. i have been asked before to describe what kind of pain I have. Words like stabbing or aching were used but I don't know how to tell the difference. To me pain is just one thing, something that hurts, I don't understand how to tell the different types.

About self-harming, I have done this too at 2 different times in my life. I can't really explain why though only they were times when i wasn't very happy about things that were happening at the time. i don't really understand depression either. i have been told I have depression many times, even now, but I don't think I would agree that I am depressed. Definitely anti-depressants don't affect me and if I read about symptoms of depression I can't see how they apply to me. I sometimes get really annoyed with the saying 'feeling low' because I can't work out what that means. To me low is a description of position of an object. I don't know how it is possible to feel it unless maybe by laying down on the floor, but I also know that this is not what it is used to mean.