Aspies For Freedom

I have had my assessment at Lifespan and I am definetly on the spectrum.  They need some more information about the language delay to decide between HFA and Asperger's, we got that information and it seem's I was not using phrases or talking at all by 3 years old.  I will have the report in 2 weeks and they are going to prepare a statement for me for work, I will have involvement in that.  Anyone want to make recommendations for things I should consider.  I work in a residential home supporting adults with learning disability and keywork an non vocal autistic guy.

Congratz!

<erkolos> Foodfight!
<Czar> oooh! a foodfight!
Czar throws a pie at erkolos
erkolos throw Fruitcake at mel

Just something going on in the chatroom...

Heard a stupid comment the other day, someone at work said oh they believe that autistic people have physical characteristics oh that such bullshit, mmm! I kept my gob shut and kept the same blank expression just like edward scissorhands!

Congrats! Two weeks that will stretch and stretch... still, it's nice of them to tell you in advance. I hate it when professionals who work with people on the autistic spectrum leave things vague. Shouldn't they know better?

Congratulations I'm really glad that you got your diagnosis!
I can't help you with the recomendations though sorry.

To me the term makes more sense in explaining to others what I'm like - if I had a choice, the closet's where I'd be at social gatherings etc.

Ouch... the idea of doctors chewing on my teeth

Or that you talk for talking's sake, not for the sake of communication.

Wow, that's tough, all that having been missed, especially the epilepsy because that's kind of dangerous when people don't know. The mood thing MIGHT be related to fits though, sometimes they are.

At least you found something that works for you

Since they couldn't possibly know that you weren't just drunk, don't be too harsh on them for assuming that. On a night out it's kind of the usual thing to assume, even though unless you check someone's breath etc. you can't really tell.

I have just had my assessment report and I am officially High Functioning Autistic.  I also got hyperacusis and I have been referred to audiology.  It also being investigated that I may be having seizures.  It frustrating that I cannot tollerate or shut out noise as well as I used to.  I avoid places I usually love like pubs, clubs and gigs (I also avoid them because most people I know are avoiding me arseholes to them!).  I plan to Download festival in June so I hope I am sorted by then.  I have had some tips for the festival like taking an mp3 player with chilling music on it.  Finding someone to go with who can handle me is the next step.

Wow, I've got most on the list, too, Fruitcake. Allergies, asthma, gastro issues, PCOS (which includes the hormonal stuff), seizures, and I've got insulin resistance (mini-Diabetes) and osteoarthritis. For me, I am convinced that these are all immune issues though I'm not certain if they all center around a single component.

In myself, I suspect an IgA deficiency which would account for the allergies, asthma, and gastro issues. About 30% of auties get seizures. And the insulin resistance and PCOS are interrelated and most likely the osteoarthritis with that too.

The biggest thing with the seizures is they are worsened by STRESS because "stress" has a common component, GABA, as the cause for seizures. GABA goes down when stress rises, and less GABA can bring on seizure activity. So the biggest thing to help your seizures is to reduce your stress. Meditation, therapy, antianxiety medications, even antidepressants that are used for antianxiety, anything that will reduce your stress levels. Because the more stressed you get, the more engrained these seizures will likely become.

Can you tell me if you have any auditory symptoms during your seizures? If so, and if you get any auras to tell you in enough time one is coming on, putting on headphones with music might help lessen or even stop the seizure. I've noticed with seizures that comprise the auditory system, "distracting" the seizure can help.

Or if you can think of other symptoms like mood swings, whatever mood you're experiencing, if at the time you can try to make a conscious effort to distract yourself with another mood, even a memory, that may help the seizure stop. Sometimes I know with a sudden complex or petite that might not be possible. But if you can feel one coming on, distract yourself. And also try to notice when they do arise. Are you getting tired? Do you hit a level of extreme stress? Is there an environmental trigger? The more you can know about your seizures, the easier it may be to use behavioral methods to quell them. You can unlearn a seizure.

I visualised noise before one for a minute or so, was freaked by noise and had was hit with a migraine that lasted 5 days, no meds would stop it, I kept freaking at all noise then I was diagnosed with sinitus and glue ear.  I noticed that noise, bright lights trigger it and too much exposure to enviromental noise.  Yep stress trigger's them too.  I have been much calmer since I went off sick from work.  I am using music on my mp3 to distract me from noise that offends.  I am doing yoga, off later today.  I try to make sure I eat regularly.  It gets worse before a period.  I have had a good response with my gastro issues since ommitting gluten and yeast plus taking anti-candida supplements.  However I cut out diary when I was diagnosed with sinitus (had a good response on execma, sinuses and I don't get many spots) however I am unsure about soya milk.  My impairments have got worse, my hormones are pairshaped, my cycle has gone off track (usually very regular).  I have connected my mood's to hormones all along but the professional did not seem interested, I want to see a gyno.  

I am seeing my GP on Monday, they will have the report.  When I mention these things she says I have read too much into it.  As opposed to listening to my body and talking to over people who understand and highlight me to things I can not explain.  My advocate says we can arrange a meeting with my healthcare professional's to discuss my issues, my impairments and how my condition affects me so that they have a better understanding.  

I believe my hypercusis is connected to epilpsey, noise is triggering attacks of panic that make me catatonic.  I believe complex partial seizures.  There are patterns to these episodes, before illness, before periods, in noisy enviroments, certain lights (I hate the big Tesco now, I shop at the market and go to the tesco express - quick shops), certain TV programmes.

I would definitely bring up the subject of PCOS. It's very common as far as being a disorder. Approximately  5-10% of the female population suffer from some variant. For PCOS, you're right, you'll definitely want to see your gyno because I've noticed many GPs either dismiss its symptoms despite acknowledging the disorder exists and others simply don't know enough to recognize it. These days they can look at a combination of levels of your leutenizing hormone and follicle stimulating hormone to diagnose it assuredly. After that, they will suggest treatments. For me, my doctor put me on birth control, more specifically the 3 month depo-provera shot because it has a more constant effect than the pills. It's not a perfect solution; women aren't supposed to be on birth control and it creates its own problems. But until a better solution comes up, it's the lesser of two evils. Many PCOSers will also develop insulin-related problems and so many, instead of taking the birth control route, will take insulin pills which improves not only the insulin issues but the PCOS as well. There is some suspicion that insulin-related issues, no matter their subtlety, are the cause of PCOS-- or at least many of its variants. (Btw, if you do get dxed with PCOS and start taking birth control, but SURE you're taking 1000mg of Calcium supplements per day, because without the estrogen, you'll be depleting the calcium in your bones and could be dooming yourself to early osteoporosis. Also make sure it's a calcium supplement with vitamins K and D added in because straight calcium just goes right through the gut and isn't absorbed; K and D help facilitate its absorption when it's in a nonnatural form.)

I have a question about your hyperacusis. Is it constant or is it only obvious to you when you're stressed or tired? I ask this because I get this when I am stressed or tired. It seems as though the whole world has suddenly turned the volume up and my ear drums have become that much more reactive.

When I am stressed, hormonal, tired, exposed to too much noise or when I am ill.  Certain noises are constant, I cannot go to any noisy places.  I can never cope with noise that vibrates (most noteably noise of my housemate moving around on his wheely desk chair above me and his base sytem on the floor - he is away for 3 weeks at the moment and usally checks if I am in before he puts on his music and tries to sit still on his chair he is understanding of my issues).  I cannot stand the high pitched noise of my african housemates and the banging of the firedoor as people go in and out of the kitchen.

It is clear my enviroment is making me worse, I was going to work to escape it which improved my mental health but did me no favours for getting out of here.  I was so 'cabbaged' when I got to work that I could not function and was falling asleep on the job.  I was also getting stressed by colleagues telling me what to say and do, being way too negative and judgemental.

Yeah, Fruitcake, I second this and definitely recommend the soulcysters forum. It's huge and has SOOOO much great information on PCOS, related issues, and how to get dxed and deal with doctors. It's the best PCOS forum I've found.