Aspies For Freedom

Try a behavioural optometrist for the vision stuff, conventional opticians often don't believe in that sort of thing.

Also, I am really now sure what to say Re: you suddenly losing so many skills. It just seems a bit weird, what has changed from say a few months ago? If you are progressively getting worse then I would really recommend asking for a referral to a neurologist (I know, considering the topic of this thread it's not good advice), because if you start experiencing new symptoms and suddenly deteriorate so badly (when before you worked and have a social life that most of us can only dream of - if we do desire such things) I suspect there may be something else going on.

Plus, no offense but you were *** lucky to have been able to get all those diagnoses in the UK (as an adult I mean, it is difficult enough to even find a specialist who accepts adults, let alone get such a detailed workup), perhaps you should put your expectations in perspective a little.

What were supposed to have been the best years of my life were blighted by vile headaches and generally feeling unwell and weird. I couldn't be sure how I would be feeling from one hour to the next. I never had any idea that I am on the autistic spectrum, because my parents chose to not tell me (or forgot out of lack of interest, who knows). I did eventually get a proper diagnosis of a physical health problem that I had, but only recently have I figured out that I must have had temporal lobe seizures secondary to the diagnosed health problem, because some of the stuff that I experienced could only have been caused by that condition. My self-diagnosis with AS was really an accident. I did tests and questionaires related to AS just for fun without expecting to find I was on the spectrum.

Fruitcake, I think they should be treating you better, but at least you know you have AS. I am sure there are many aspies who will never find out or be told the truth about themselves.

Sorry if the above came off harsh, I shouldn't post when I'm in a hurry to leave...

I really think that asking whoever diagnosed you for a referral to a neurologist might be an idea, because the epilepsy stuff is serious and there are several conditions that are known to cause both autistic symptoms (I have known a few people on the milder end of the spectrum who had  partial Agenesis of the Corpus Callosum, for example - the condition Kim Peeke, the "original rain man", was born with).

A problem with many general health (and educational) professionals especially in the UK is that the distric has very limited funds, and even severely autistic children often do not get anywhere near the support they require (or their families for that matter - social services are often involved because it's cheaper to accuse the parents of bad parenting than to fund special therapy and education).

So if someone is not only high-functioning but also an adult, the district often tends to be extremely reluctant to provide any support. After all, it is not an acute condition, developmental disorders improve over time, they don't suddenly get worse etc. So why spend money on someone who is so high-functioning that they have successfully held up a job and lead a successful social life for many years.

The fact that something as serious as epilepsy is involved can often end up being regarded as secondary when in fact it usually contributes majorly to the more problematic aspects of someone's autism

And the fact that you had such a clinic on your doorstep isn't at least a little lucky?

I agree though it sucks that they ended up getting funding just AFTER your referral, that's seriously bad timing.

Good - that this went undiscovered all your life is indeed scandalous!

Again though, how many people do you think have the "luxury" of an advocate in the first place? Those kinds of services (if you're talking about the NAS thing) are sadly not available in most parts of the country, and those who are unable to communicate their needs even just to get such an advocate just go on suffering in silence.

Very much so. But since you already understand that it's about money to some degree, you should probably keep that in mind when you're getting frustrated with the NHS.

Indeed - there are some supplements that might help, I think one is called DMG but I don't know if it's available in the UK. It is still disputed whether it has such effects but some have had a lot of success with it: http://content.nhiondemand.com/moh/media...mtyp=4  

[qupote]What you said about the real rainman, you hit the nail on the head there, I watched the documentary and something hit home with that.  I have a hell a lot of interests can absorb information like a sponge, I seem to do similiar stuff to him (but not to same extent in factual information).  I seem to able to do what he cannot better, I swear my left side of my brain does not connect properly with the right.  It was real spokey watching that, it got me all excited.
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I know, I feel that too... I know there is something about how I absorb information and can't access it consciously that I have found very similar to such descriptions. I dont have epilepsy though.

Me too but I need that trigger. (Visual is better) Without that, the information stays locked up. Only details on my current interest(s) and a certain amount of data I use in daily life is available to me consciously. Makes for nice surprises when I stumble across things (books etc.) I had not remembered I had, and that triggers a whole re-discovery of "lost" treasures because suddeny I remember lots of other things my brain somehow stored with that item.

I sometimes do, but again I couldn't repeat it if you asked me "What did I say about this subject when we last spoke?", yet if you said the same thing again but worded it differently, I would instantly recall the precise wording you used and would usually not be able to stop myself from correcting you.

For me only for spatial and some visual stuff. I can remember the layout of every place I've been to since I was about 1 1/2, the feel of the space around my body, where the doors and windows are, where the bathroom is etc.

Also the smells and textures and materials, what they tasted like (or would have tasted like, had I tasted them, e.g. my brain stores the fact that something is made from "wood" as the sensation of wood as I grew up to know it, taste, smell, texture and all), and certain visual aspects but always in fragments.

It's almost as if my brain only takes in one fragment at a time visually, and so it has learned to store things using other senses instead, spatially, with the sensory associations attached to the rough spatial shape of things.

That's one thing I realised lately, I always thought "But I do use gestures a lot". However, I use gestures almost like a sign language to keep myself on cue when I am talking. So if I am talking about a cup, I often end up shaping a cup with my hands and glancing at it briefly before continuing. I realise now that this may appear odd to others, but without it my sentences get muddled and trail off halfway through.

I read what Donna Williams said about "talking through objects" (using objects to represent things you are talking about, to help keep meaning in what she says) and I always thought "I could never do this, I couldn't keep track of what each object stands for!". But actually, it doesn't need to be a continuuous representation, it's enough just to have that brief visual feedback to the words coming out of my mouth.

Yup, me too, my Dad's medicine books (his interest is in medicine especially natural remedies, he is a barber and his older customers really appreciate the tips and remedies he sometimes gives away. Nothing dangerous, just stuff to rub on stiff joints etc.) were my favourite books before I got my set of encyclopaedias which were old-fashioned but well-illustrated.

I didn't have a speech delay (started at ca. 14 months, which my parents considered "very early") but only repeated stuff and didn't use speech for communication until I was around 3 1/2 to 4 (when I became aware of letters, and then it "clicked"). Although I still have trouble with sequencing sounds in speech, far, far less so in writing.

I was really, really lucky because I was enroled in a special education kindergarten for the next 1 1/2 years, a school for children with motor and visual disabilities, where basically every day was useful, sensory-oriented all-round "therapy". I was there as a "normal" child but with hindsight I dare not think about where I'd be at if it hadn't been for that time.

I always have phases where my brain is "chewing on" information and I just cannot take in any more information. I read but it doesn't make sense until much, much later. Then a few weeks later my brain starts forming conclusions to things I was never aware it was thinking about.

There are phases where I absorb and read non-stop, but cannot consciously process or respond. Other times I cannot absorb new things but can and almost "have to" express those newly formed views I had never known I was forming.

All my life I have worked best when part of my brain was occupied with noise, I can read so much bettter that way, and think better. As a child I used to hum and later sing to myself constantly, nowadays it's the MP3 player. (I did have a few audio cassettes that I loved to listen to over and over, but I go through phases where I can't take in audio stories, similar to how I am with reading sometimes)

LOL... that's quite characteristic of epilepsy (temporal lobe I think?) but it could be your PC!

Anyway sorry for hijacking your thread!

Actually it was probably about age 2 that I can remember layouts back to. Before that I don't really remember much that was more than ca. 1 meter away from me (I remember my 4 or 5 baby toys, the feel, shapes, sounds etc.) but my first memory is from when I was ca. 6 months old, my bed was sort of in the communal area or living room/hall, and my Dad was going to work* rushing from left to right (this was later confirmed as being he correct layout) without coming to my cot/bed as he normally did, making me angry.

* The Swiss and our obsession with work - When I was older, my mother and I also had this ritual in the evening where I would stand on my table looking out the window (I guess not the best thing to teach a child... but then until I discovered books I was very passive and would never have done something forbidden or dangerous anyway. Well, apart from running blindly into traffic. But indoors I was very passive) to spot my Dad coming back from work.

Experiencing smells that other people can't smell can I believe have a number of different explanations. It could be temporal lobe epilepsy or it could be a heightened sense of smell due to the greatly heightened sensitivity of all the senses that many autistic people have. I think it may also be true that normal people can have hypersensitive senses of smell and vision in association with migranes. I myself sometimes have this in association with bad headaches. Perhaps the most unsusal explanation that I know of to explain sensing smells that others can't detect is an unusual form of synaesthesia. I have a number of different forms of synaesthesia, a mostly harmless neurological condition that is sometimes found in autistic people. Very occasionally I experience synaesthesia triggered purely by a particular strong emotion. This can in my case result in tasting a phantom flavour or smelling a phantom smell. You probably won't read anything about this form of synaesthesia in the scientific literature as the scientists appear to be still discovering new forms of synaesthesia.

One of our kids sometimes complains about smells that others can't detect. This child has always had very sensitive senses (as do many other intellectually gifted people, according to what I have read) and has at least 2 forms of synaesthesia. Someone else that I know (offline) is known to complain about smells that others aren't aware of. This person is a self-diagnosed aspie, is sensory-sensitive and also has a history of epilepsy. I believe the famous writer Lewis Carroll had a habit of complaining about smells. He is thought to have been an aspie, had migranes and also may have had temporal lobe epilepsy.

I've read that autistic people who have epilepsy sometimes start having seizures at the time of puberty, so don't assume that you would have needed to have had epilepsy since childhood to be a genuine epileptic. Should you find out that you do have the condition, don't be surprised if the applicable drug treatments are worse than the condition itself. I believe anti-epilepsy drugs are powerful stuff with side effects (drowsiness, impaired mental functioning, weight gain???). I know that good doctors don't prescribe these drugs casually.

What do you mean by more aware of myself? I must say a lot of this was stuff I had to think about (although again my brain does the thinking and then lets me have the result) and figure out, with the help of others at times*.

I've had more than 3 years to think it through, and a lot of it I only "discovered" when I sat down and let my fingers do the talking.

* One thing that helped me understand those systems of my brain was Email consultancy with Donna Williams, I don't know if she still does it but her site is here: http://www.donnawilliams.net/ but it's not working at the moment.

If you do do this always make sure you ask her precisely what you want answers to otherwise precious time is 'wasted' with answers to things you didn't ask about

Sounds like some sort of seizure and then a panic attack as a result. I get those panic attacks from drops in blood sugar (reactive hypoglycaemia) and certain additives in processed foods. I just can't figure out WHICH ones.

If you can afford it (unfortunately they are mostly from the USA and shipping is a killer!) try a weighted blanket.
http://www.specialneedstoys.com/uk/viewp...bnavID=143

As far as autism is concerned you're pretty "normal"

Thinking about pressure makes me "swoon"

Indeed, a lot of stuff I wasn't even aware that I hadn't been able to do (when crossing the road, keeping track of cars on one side while looking the other way for example) until they suddenly clicked in my mid to late Twenties.

Indeed, a lot of stuff you can't know it works differently for most people unless someone tells you, right?

Yes I can imagine that would make things difficult - having adjustable radiators in each room helps to some degree but you can't sit in your own room all day!

That sounds great, good luck with that

Sounds like a good idea, especially since you could use the sensory toys yourself in your spare time

And it's worrying that they assigned someone else already, unless the person who normally covers is away? (Might have taken the week off before Easter due to school holdiays)

Indeed, a lot of stuff I wasn't even aware that I hadn't been able to do (when crossing the road, keeping track of cars on one side while looking the other way for example) until they suddenly clicked in my mid to late Twenties.

Indeed, a lot of stuff you can't know it works differently for most people unless someone tells you, right?

Yes I can imagine that would make things difficult - having adjustable radiators in each room helps to some degree but you can't sit in your own room all day!

That sounds great, good luck with that

Sounds like a good idea, especially since you could use the sensory toys yourself in your spare time

And it's worrying that they assigned someone else already, unless the person who normally covers is away? (Might have taken the week off before Easter due to school holdiays)

Oops sorry for the double post

Gee that's lovely (not)

Hooray, another blue-y!!!
(Sorry for the enthusiasm but a lot of people seem to be reddies or brown-ies)

It might be the light/fluorescent or other lamps indoors that creates a problem... blue has that effect on me because I am oversensitive to yellow and undersensitive to blue. I can see 3D a lot of the time with the right tint, even blue-grey does the trick.

I fluctuate between purples and blues but it's mostly blues, especially hues of light and dark blues in contrast. Blue just calms me instantly, it's amazing.

And reflective stuff... I used to have this lovely bear that the insurance sent all kids at 6 or so when you learn to ride a bike... I could stare it it forever, and had to have it with me all the time... I remembered it recently when my phone got a bit of rain on it... I had to cover the back of my phone in holographic stickers to stop myself spittling on my phone...