Aspies For Freedom

Great article!

NBC and Newsweek were very nasty in running the "autism epidemic" stories last February (even not including the "the issue was for my birthday, so it is extra bad" points). They should be ashamed, as should be the CDC. Autism is not a disease! It's only devastating and financial trouble if you're ignorant! Autism Speaks, as a name, doesn't make any sense! Ugh!

The $2.5 million should have been taken away from the CDC! Newsweek should have not printed that article! And NBC should have not ran that either! (As a matter of fact, why couldn't NBC talk about Mary Worth, kidney thieves, or mutant KFC things if they wanted to run a myth? Was it for the publicity? It obviously was.) And then Newsweek does not run an apology and prints biased pro-cure squat in the letters? The pro-cure get glorified more, when they don't even deserve it? NBC rubs their nasty intentions in with "Report the facts. Respect the truth."? Seems like that's what happened!

What about feeding these people their own bullshit.  If they have children / relatives with autism then its probably becasuse they carry the gene themselves.  If they get their way theyll find themselves atop their own pyre.

Kathie, there are so many important points on which I totally agree with you. I'm a Mum in a family in which I believe everyone is somewhere on the autistic spectrum, but we have all evaded diagnosis. You were sceptical about the professional opinion about early developmental windows of opportunity with regard to cerebral palsy. I have had a similar experience with speech pathology and one of my kids who had a temporary speech impediment. Against strong pressure from teachers I decided to not seek evaluation or treatment for my child, and, as one would expect from the statistics, my child just grew out of the speech problem in short time. No need for the professional evaluations and waiting lists and time-consuming intervention involving parents and expensive professionals. I saved the Australian taxpayer a lot of money, my child a possible dent in self-esteem, and saved myself a lot of bother and time. I have no knowledge of the effectiveness of speech pathology for specifically autistic speech problems, but I have found a really alarming professional disregard for proper scientific evaluation of one particular speech pathology intervention.

I read Mr Bruer's very enlightening book a few years ago. It's a pity that book isn't more widely read. Unfortunately Mr Bruer's evidence and argument goes against the strong tide of popular and professional opinion in Australia. A couple of years ago Fiona Stanley was given the Australian of the Year award. She is a staunch "early intervention" advocate who is popular with the media, and is so popular that she is going to have a hospital named after her.

This is a link to the organisation that Mr Bruer is a president of
http://www.jsmf.org/
There's a special section at this site for "Bad neuro-journalism"

I think the solution to the peddling of unproven ideas about child development and interventions would be the popularisation of the idea of evidence-based practice as practiced by the Cochrane Collaboration. I believe every parent or school leaver should be made aware of these ideas and data bases that are freely accessible to the public.

This is a link to the Cochrane Collaboration.
http://www.cochrane.org/index0.htm

I couldn't agree with you more, Monastic, but the problem with the idea of lobbying the govt or pro-cure groups is that they won't pay any attention to the opinions of one person. They are only going to take or cause seriously if they think we represent substantial numbers of people. That is why we need to form communities and act collectively before we can expect our opinions to be taken seriously.

Gareth set up a local group at his college last year. The group consisted of students there who were on the spectrum.

The college let him advertise, and let them use a room to meet up.

Some places will let you advertise for free, like libraries often have posters for local events up.
Some newspapers will put a little piece about new groups too.
Would it be an AFF group, or other?

monastic said "I've got a theory that quite a few of the homeless are possibly autistic. I understand it is hard to maintain bills, housing and employment (because it is difficult for me) and some of these few may have fell on hard times."

You are right, it is thought that many people end up homeless from not receiving the services they need. They did an experiment in the UK. An undercover journalist posed as a homeless person with schizophrenia, he went to doctors, and benefits agencies to ask for help, and he was ignored and dismissed as his behaviour was unusual, they didn't want him even in the doctors surgery. He was simply talking in a repetitive, detached manner, he wasn't violent in any way.

Good luck with setting up a group, if we can help in anyway, pm me.

Amy, that experiment that you described could be as applicable to AS as to schizophrenia. I think the people who ignored the journo acting probably had the attitude that the person's problems were mental health issues rather than social issues. But it is worth remembering that it was only acting, in a contrived scenario. Myself I don't recognise any of my own characteristics in homeless people. I think alcoholism, drug and substance abuse, brain damage and schizophrenia account for most of them.

Monastic, do you really think aspies want or need sympathy and talk? My guess is that adult aspies would prefer to have an advocate group that can help them with legal protection from workplace discrimination, mistreatment from "the helping professions", and govt and institutional abuse. I don't see much point in providing tea and sympathy after everyone has let the powers that be screw over the vulnerable person. I once joked on AI that I'd never join any group who called themself a "support group" because when I need support I visit the bra department of my local Myers or Target store.

Though, of course, alcohol and substance dependence can co-exist with, and aggravate, ASD.

In the United Kingdom it was recently discovered that mental health service users were 58 times more likely to die before the age of 50 than those who have never accessed mental health services.

What conclusions might we draw from this observation?

Stella

Stella wrote

Could in theory, but I've never seen such a thing myself.

I have seen it co-exist with a relative.

I think a group can be anything, support, ideas, practical help, it can evolve as the needs of the members do.

The study also suggests that those families that have Autism in them are more psychologically susceptible to social influences like drinking or gambling and not that alcohol causes Autism.

People who are impressionable, sensitive and easily stressed out often turn to drugs or alcohol or self harm/abuse to cope with life.

I don't mean to be rude, Stella, but those studies are really quite meaningless, at least as far as I can tell from the abstracts. The second one was of a group of only 24 subjects, and we don't know how they were chosen. Were the subjects chosen in a random fashion, or were only abnormal children of alco mums chosen fro this study? I myself am very sceptical about the whole Fetal Alcohol Syndrome thing, for a number of reasons. Firstly, though I don't drink while pregnant, I find it extremely hard to believe that drinking during pregancy is not a very common thing, considering how alcohol-soaked Australian society is, so I would expect that every fourth Aussie child should have the very distinctive FAS facial features, but they certainly do not. Secondly, the experts on this syndrome are still unable to establish a relationship between dosage and damage, they are unwilling to say if there is any safe level of exposure, and thirdly, the experts are now trying to sell the idea that FAS is associated with or a cause of autism, which just doesn't make sense when you look at all of the evidence that autism is generally inherited genetically.

What was the first study supposed to show? That there can be alcoholism in autistic families? As I pointed out already, I know a few non-alcoholic aspies who have had relationships with or married alcoholics (I have no idea why), so that idea isn't news to me. I'd be very surprised if there was no alcoholism in aspie families, because you find alcos in many families. It's commonplace. Binge drinking is an essential feature of Australian working-class and youth culture. It's the main leisure activity of many people.

Some aspies do get help, and do get DLA, it might be the case that those who are more likely to get help have been diagnosed at a young age, and are already in the system. Whereas those who get diagnosed late have a harder time.
Or maybe its just luck either way.

You can't draw any conclusions from this, because it is just an association between two things. To draw conclusions about causal relationships between things you need to do research to se what causes what and how.