Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Archive for July 2007

Aspie Quotient

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So Steph pointed out to me last November that I could well be an aspie. I mused on it for a while and decided I probably had what are called shadowings of asperger’s – in other words you score very highly on the tests but don’t quite have the full blown syndrome. I’ve been musing over it ever since.

A couple of weeks ago I came across an online asperger’s test. I’d hitherto regarded taking the tests as pointless, as your preconceived opinion influences how you perceive yourself and answer the questions. But I thought what the hell. It was a bit of a bombshell to get the results. After I got the results I got into a glitch of having to try every different online test. Here they all are:

AQ Test

Example scores:

32-50 Scores over 32 are generally taken to indicate Asperger’s Syndrome or high-functioning autism, with more than 34 an “extreme” score.
24 Average math contest winner
21 Average male or female computer scientist
19 Average male scientist, and average male or female physicist
18 Average man
17 Average female scientist
15 Average woman, and average male or female biologist

I got 38. I panicked and took the test again trying to water down my results. I managed to revise it down to 35.

Aspie Quiz

Trait group Score Judgement
Motor difficulty 7.1 Above average
Perception difference 9.8 Above average
Aspie talent 9.9 Above average
Aspie disability 9.7 Above average
Social difference 9.5 Above average
Aspie instinct 9.3 Above average
Aspie communication 8.8 Above average
Neurotypical communication difficulty 8.7 Above average

Your Aspie score: 184 of 200
Your neurotypical (non-autistic) score: 18 of 200
You are very likely an Aspie.

The Geek Test

Your score suggests possible Asperger’s syndrome. You scored 35.

Empathy versus systemizing (Baron Cohen’s tests)

Systemizing quotient test

Example scores:

0 – 19 = low
20 – 39 = average (most women score about 24 and most men score about 30)
40 – 50 = above average (most people with Asperger Syndrome or high-functioning autism score in this range)
51 – 80 is very high (three times as many people with Asperger Syndrome score in this range, compared to typical men, and almost no women score in this range)
80 is maximum

Your score: 60. I took the test again trying to tone it down and scored 67. Doh.

Empathy quotient test

Example scores:

0 – 32 = low (most people with Asperger Syndrome or high-functioning autism score about 20)
33 – 52 = average (most women score about 47 and most men score about 42)
53 – 63 is above average
64 – 80 is very high
80 is maximum

Your score: 20. I took this again trying to tone down some of my answers and somehow failed to do that and scored a 12. Doh. Maybe it’s broken or something, or I was being careless… I wonder whether my self perception has been warped over this aspect of my personality in the last year. I can’t be neutral in answering these questions. My confidence about my social skills took a knock last year when I discovered my one/only close friend was on a totally different wavelength to the one I thought she was on and we fell out.

Autism Spectrum quotient test

Example scores:

0 – 10 = low
11 – 22 = average (most women score about 15 and most men score about 17)
23 – 31 = above average
32 – 50 is very high (most people with Asperger Syndrome or high-functioning autism score about 35)
50 is maximum

Your score: 42. On revision: 39

Mind in the eyes test

Example scores:

A typical score is in the range 22-30. If you scored over 30,
you are very accurate at decoding a person’s facial expressions
around their eyes. A score under 22 indicates you find this quite difficult.

Your score: 29. After doing so badly on the other tests, I was pleasantly surprised to do so well on this test. I felt I was guessing on a few of the images!

Even though I’m skeptical of this kind of testing, getting these test scores made it all real. Should I get a proper diagnosis, speak to a doctor? I really feel it would help my parents to understand me, and perhaps help to repair the poor relationship I have with my mother. It would help several other members of my family, particularly an uncle. It would give me the authority to speak out. Maybe.

But I’m afraid too. I’ve heard many stories of people with asperger’s syndrome having their babies taken away from them, for the most outrageous reasons – one merely because social workers argued the woman in question was “more likely to get post natal depression” than a neurotypical. That’s the level of prejudice that exists. Never mind that the best parent an aspie child can have is an aspie parent. I decided a long time ago that if one day I should have children like myself, I would not send them to school to be bullied like I was – yet I know of a case of an Asperger’s child being forcibly adopted because his parents refused to send him to state school because the poor child couldn’t cope there. Social workers are generally patronising, arrogant and dangerous to autistics. I’m not sure I want anyone in a position of power to know anything about me.


Written by alienrobotgirl

28 July, 2007 at 8:27 pm

Posted in Asperger's Syndrome

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I'm not back yet (part two)

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I guess part of the reason I disappeared over the last few months is that I was feeling fairly worn down with the whole thing. I wanted to find some sort of a solution to this problem, though ever since I started I’ve had the sinking feeling that it’s a part of my biology and hell, high water and wild horses aren’t going to do the slightest thing to change it. I’m not going to change the world or its eating habits either. The best I can do is try and spread the word as far and wide as possible so at least some of the most inquisitive, resourceful, and open minded people are able to figure out the causes of their ill health. Instead I got tied up in the minutiae of trying to help every individual try to figure out the cause of every little reaction they had so they could avoid doing the elimination diet and testing things properly.

People always have to do their own thing. People hate doing the elimination diet. People make exceptions for their favourite foods, or foods they think are nutritious. They take vitamin megadoses, or vitamins they’ve been told to avoid. They take probiotics that half the time make them ill. They try chelation therapy and when they react to the DMSO they think it’s because they’re moving mercury out of their bodies. They try to eliminate one chemical at a time and get locked into an either/or mentality. They make endless mistakes with what they can and cannot eat. They bitch about food not being tasty. They bitch about not having anything to eat. They become obsessed with eating foods that they should be using caution with, and then don’t understand they’re self-medicating their addictions. They become enamoured of the dubious “you need to eat more salicylates not less” theory of salicylate intolerance. They give their good money to bad quacktitioners who sell them NAET, hypnotism, acupuncture, and homeopathic cures. Belief is a very powerful thing. At the first sign of becoming sick, they bottle it and start using non-failsafe medications and herbal remedies. If they get sick, they blame the elimination diet and decide salicylates must be good for them instead of acknowledging the fact that their body is in turmoil and needs at least three months to reset. And they never, ever question the idea that fruits and vegetables are good for you – that the “wonderful antioxidants” they contain are the exact same reactive compounds that are making them ill.

This is pretty much why I needed the mental holiday. Not because I’m upset or having a rant about what is inevitable and a part of human nature and what we all have to go through (I went through it all too), but because I was so tired of going over old ground. When I have to say something more than about three times, I start to feel stupid and embarrassed at having had to say it again. I never know when I’m patronising people or talking over their heads. It’s just the way I’m built. Aspergers. I’d make a bad teacher.

That’s why when I get back on the case I’ll have to try hard to restrain myself from unnecessary posts and interactions with people in order to give myself enough time to get the information website updated and completed. Now I come back to look at it, I can see tons of errors and things I want to change. For example, salicylate, amine, and glutamate intolerance isn’t merely about detox or inactivation of the compounds involved. It’s also about inflammatory processes, about genes that effect neurotransmitters, and a kind of a sensitivity I can’t quite explain but seems to be integral to autism, asperger’s, ADHD, fibromyalgia, and other related conditions. I think it’s something that deserves a “syndrome” title – like “food chemical intolerance syndrome” – or “feingold syndrome”, except it isn’t necessarily ultimately about food, but an integral weakness or difference that is expressed when exposed to certain chemical, atmospheric, environmental, emotional, and food triggers.

I think it’s genetic, or at the very least congenital. I don’t think anymore that in some people might have anything to do with vitamin deficiencies, or with toxins like mercury, or with gut flora, or any other vague possibility that people have theorised. I think it is primarily a modern syndrome. I think it has something to do with our evolutionary diet being low in chemicals, and our evolving in a highly pressured, dangerous environment in which survival of the fittest is survival of the brainiest. I think it has something to do with eating a diet consisting almost entirely of fatty, fresh meat and bland root vegetables, and that’s why we do very well on this diet and very badly on a modern “healthy” diet. I couldn’t care less what various native tribes eat in obscure regions of the world where these genes probably haven’t propagated, as I think it’s fairly irrelevant. Dr Price did not in any case study the health of people beyond their ability to fend off infections and the quality of their bone development. This syndrome is far more subtle than that.

As I have always said, we are all affected by food chemicals beyond a certain point, and that point isn’t particularly high, but some people are particularly badly affected by them and they are different in some fundamental way that cannot be summed up and pinpointed with one gene, or two, or three, but perhaps a small, correlating group of genes. Is autism caused by food chemicals? Or do food chemicals affect autistics particularly badly? Is our inherent hypersensitivity to our environment caused by the food chemicals, or does this inherent hypersensitivity make us sensitive to the food chemicals? Is the hypersensitivity just a different unrelated aspect of the genes involved? Who knows?

Written by alienrobotgirl

27 July, 2007 at 5:18 pm

I'm not back yet (part one)

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A fellow blogger contacted me last week asking where I was… Which has reminded me that I actually have a blog and has given me enough of a kick up the ass that I’ve found time to update it.

Where have I been the last five months? Renovating a house. Nearly three years ago we bought a pretty little cottage in the peak district. We bought the cottage as a fixer-upper. It needed some serious fixing – more than we had originally budgeted for, including a new roof. We decided to put in for planning permission for an extension, which took months and months to go through the system. Eventually it was refused.

Because he doesn’t drive (epilepsy), I’ve spent the last couple of years driving my partner to Sheffield and working from his office. Until last year I was working for him doing programming and graphic design work, but I quit working for him so I could get back to writing – my ambition has always been to be a sci-fi/fantasy/horror novelist. But this all coincided with me going on the failsafe diet, and a downturn in my partner’s epilepsy, and a sequence of family crises including a hospitalisation and a bereavement. Also, I was still working in my partner’s office which is open plan. To be frank, you can’t write a novel in an open plan office surrounded by neurotypical people who think you are the office oddball. To quote Virginia Woolf, “a woman must have money and a room of her own if she is to write fiction”. Instead I spent most of last year trying to get my health back on track, investigating and attempting to fix my food chemical intolerance, and trying to communicate the concept of the failsafe diet to a rather reluctant and ostrich-like Weston A. Price Foundation.

Following the planning refusal, we decided we needed to move house to somewhere bigger, and closer to my partner’s work. That way there’d be no more hour-there, hour-back commute, and I’d be able to work from home and actually do something constructive. We knew that if we sold our house in its current condition we’d lose money, because a new roof doesn’t really add any value to the sale price. For some reason people want immaterial things like artex-free magnolia walls instead…

The whole thing crept up on me. One day I was sat there blogging, the next day the removal boxes arrived and I started packing. We have too many books. It took me a couple of weeks just to empty our two sheds of books in order to move our kitchen utensils in there (we also have too many kitchen utensils). Then I was launched into a kitchen refurbishment, followed by more packing and unpacking, followed by an entire replaster of the house, new doors, carpentry work, and the entire downstairs floor had to be tiled. After the work was done I had to decorate. My laptop even broke for a while because of all of the dust.

The decorating took weeks. I had to seal all the plaster, then it took another three coats of paint to cover (Dulux Once should be renamed Dulux Twice in my opinion). Painting ceilings is exhausting! The tasks and snags just go on and on. At one point I had a list of about thirty tasks I needed to do, all of which would take me about half a day each. You do one job and it usually makes a snag, you fix the snag and in the process make another snag.

In the middle of all of this we were trying to shop for and buy a house. We found a rather attractive four bedroom Edwardian property in Sheffield. So, more packing, moving, unpacking, chaos, blah, blah… Amusingly we forgot to take the washing machine with us. Then I was commuting back to the peak district to finish the decorating and dressing the cottage (and do the washing). I finally finished it last week and it’s on the market now. Today we received the ironic and unexpected news that the planning permission for the extension to the cottage had been granted on appeal. But it isn’t over yet, I’m currently in the middle of decorating what will be my new study in the new house. I can’t wait, it will be wonderful to have a room of one’s own.

When I have had a chance to sit down and relax during the last few months, all I’ve wanted to do is slob out in front of the television. I suppose I could have kept up the blogging if I really wanted to, but I needed a mental holiday. It’s how I work. I deal with one thing at the time. I let it consume me and obsess me, and then I move on to the next thing. I don’t multitask. I should have gotten around to posting a message on my blog saying where I was, but at least I managed to post something to the FailsafeNT group.

Written by alienrobotgirl

27 July, 2007 at 5:17 pm

Posted in Personal Diary