Rearranging accessibility: more on invisible disability accommodations

I wrote a post a while ago titled Stop and think: invisible access for invisible disabilities. It was a personal narrative of some of my experience with chronic fatigue syndrome. In it I mentioned a couple of accessibility problems that I had encountered repeatedly. So I thought I’d go into a bit more detail about some accommodations for people with all sorts of invisible disabilities.

The overriding principle here is: Anyone you encounter may have an invisible disability. They may not wish to disclose and explain that disability to every single person they meet; sometimes, getting out of the house is hard enough, and it’s too exhausting to contemplate spending another and yet another five minutes explaining and defending their (often quite simple) needs. In addition, they have a right to medical privacy. You can do your bit to make their difficult lives a little easier by considering invisible disability access in the various aspects of your life.

This is in no way an exhaustive list. Many items are based on my own experience, or that of others in the forums I frequent. Add your own!

Individuals:

- If you see someone who’s lost, don’t just point them to a sign and walk off – you don’t know whether they can read it. Give them verbal directions, or offer to show them their location. You don’t know whether the person has minimal sight or can’t read. If they are still completely at sea and you think there may be more to the story, ask if they need more help – perhaps they’ve become separated from a carer?

- Give people a break. The person annoying you may not be drunk, high or wilfully irksome; they may have a movement disorder (like cerebral palsy), autism, an illness affecting their memory or speech or cognition, a mental illness. Protect yourself if need be, of course, but be patient with minor irritations. Realise that the world has all kinds of people in it, and they all deserve access to public spaces.

Filed under: Life, autism, disability, education, health

Ghouls

I haven’t posted here about the Virginia Tech massacre, because I had nothing adequate to say. I got in an argument about guns over at LP, and that was one reason I didn’t write on it here either. Sadly No! summed up most contributions aptly as everybody thumping their usual tubs and bellowing that “this massacre proves that I was right all along!” (paraphrase). Even the best contributions had some whiff of furthering established agendas about them, and I didn’t want to add any more to that than was already out there.

But when some ghoul starts linking the massacre to Cho’s alleged autism diagnosis, and then further goes on to thump their discredited vaccination-causes-autism tub, (therefore Vaccines Are The Real Killers) I can’t stay silent.

Thankfully, Orac (Respectful Insolence) has the rebuttal covered:

Never mind that blaming autism for the rampage is bad enough, but Moses has to compound the vileness by implying that vaccines can turn children into killers. Never mind that there is no good evidence that the mercury in thimerosal in vaccines in any way contributes to the development of autism or autism spectrum disorders. Never mind that the latest statistics from, for example, California show no decrease and, indeed, a continued increase, in its autism caseload in 3-5 year olds in the first quarter of 2007, now four years since thimerosal was removed from all childhood vaccines other than the flu vaccine, when by now, if mercury causes autism, we should have seen a huge decrease in the caseload. Never mind that there’s lots of other evidence that shows no link between vaccines and autism.

Thimerosal has been utterly discredited as the cause of autism, and removed from vaccines in the West for years now, yet still autism cases are on the rise. When are these pseuds and quacks going to give up on this bullshit?

Filed under: Science, autism, moral panics, peeves, skeptics

Social skills: over-rated?

(Updated: forgot the damn link) Twisty thinks so, after describing her own lack of compliance with social conformity:

It is an asset, not to mention a joy and a relief, to be unencumbered by social skills. What are they, after all, but a set of arbitrarily-conceived customs meant to sort people into classes, the more conveniently to be dominated by those whose mastery of the arbitrary customs is superior? I’m sure I need not point out to you, O my fellow blamers, that the stability of patriarchy as a system of social control relies on the mass assimilation of these customs. Customs are the currency of culture; the more you absorb, the greater your rewards. But closer examination reveals them to be nothing but taboos and commandments designed to restrict human conduct to a finite set of ritualized mannerisms constrained by foul ideals of deference, appeasement, and conformity.

“Attractiveness” is one of those mannerisms. You know what? Fuck attractiveness and the establishmentarian horse it rode in on.

So, back to the question posed by Person X, “is there anything about being a geek that makes a person more attractive?”

I am happy to say, no there isn’t, and isn’t that nice.

For the so-far unTwistified, be aware that she uses hyperbole and polemic like scalpels in her rhetoric. If you are confronted by some of her statements, you’re meant to be, and whining about it over there in discussions is counterproductive to say the least.

As the parent of children on the Autistic Spectrum, (and displaying more than a few ASD traits myself), I find a post like this most bracing. I might go outside and spin on the lawn for a while.

Filed under: Sociology, autism, relationships

So, my kids really are mutants

From Newsweek – Autism: New Findings in from Big Gene Study

So what are the preliminary findings?
What this shows is that there are rare chromosomal changes, what we call copy number variations, [associated with autism] rather than a single base pair or DNA sequence.

What does that mean?
Humans often have common genetic variations that are linked to disease. The thinking has been that this model should apply to autism as well, and it does—common genetic variations do contribute to autism. But we’ve also discovered that a significant proportion of ASD results from rare mutations that are specific to people with ASD, and don’t occur in normal people. Finding rare mutations is a huge scientific challenge because it requires an intense, expensive genome investigation.

Haven’t scientists known for a long time that autistic spectrum disorders are genetic?
Yes. We know, based on family and twin studies, that autism is the most heritable of any neuropsychiatric disorder.

So, the togster is a big mutant and the tigling is a little mutant, a reversal of their current heights that they may well get a kick from. Me and mr tog are probably little mutants too, consistent with the heredity factor. (All humans – and other organisms – are mutants to some degree of course, as DNA replication is never 100% perfect. This is the sine qua non of evolution – variation in the genome.)

Seriously, the more work like this is done the less crap pseudoscience there will be about vaccinations, “refrigerator-mothers” and parents who just can’t discipline their weird kids properly. I, for one, welcome our new mutant overlords.

Filed under: Science, autism, family

Growing Up Different: Temple Grandin’s experiences with autism (and mine)

The whole article speaks to me about my experiences raising my autistic son, but this section especially:

AUTISTIC TACTILE PROBLEMS

I pulled away when people tried to hug me, because being touched sent an overwhelming tidal wave of stimulation through my body. I wanted to feel the comforting feeling of being held, but then when somebody held me, the effect on my nervous system was overwhelming.

Small itches and scratches that most people ignored were torture. A scratchy petticoat was like sandpaper rubbing my skin raw. Hair washing was also awful. When mother scrubbed my hair, my scalp hurt. I also had problems with adapting to new types of clothes. It took several days for me to stop feeling a new type of clothing on my body; whereas a normal person adapts to the change from pants to a dress in five minutes. Many people with autism prefer soft cotton against the skin. I also liked long pants, because I disliked the feeling of my legs touching each other.

Filed under: Life, autism, family

Interesting autism research

Autism risk linked to older fathers – study:

Children fathered by men at age 40 and older have a higher risk of developing autism, possibly because of mutations or other genetic changes, according to new research.

The study “provides the first convincing evidence that advanced paternal age is a risk factor for autism spectrum disorder,” said the authors from Mount Sinai School of Medicine, New York, and the Institute of Psychiatry, King’s College London.

My son has high-functioning autism, and my daughter has Semantic-Pragmatic Disorder, also on the Autistic Spectrum. My husband was 44 the year my son was born.

That wasn’t one of the things that worried me about our age difference at the time.

Filed under: autism, family, health