28 Nov 2007

The United Nations and Autism

How far we still have to go.

I just read a press release from the United Nations on a 'World Autism Day Resolution';

Member States should break the “barrier of shame” of people suffering from autism and raise international awareness of the importance of early diagnosis and treatment of the brain disorder, which was estimated to affect 35 million people worldwide, Nassir Abdulaziz Al-Nasser, Permanent Representative of Qatar to the United Nations, urged this afternoon during a Headquarters press conference.

Qatar shares the concerns of a number of countries about the high rate of autism in children in all regions of the world,” Mr. Al-Nasser said.
(My emphasis.)

Well, I'm not sure what 'barrier of shame' means in this context. Perhaps he is trying to adopt the social model of disability and explain that people are treated shamefully for their autistic differences and suffer from a lack of acceptance, understanding and accommodation.

There are calls for the UN to designate April 2nd as a UN autism awareness day. It's a shame that these efforts are appropriated by organisations like the badly named Autism Speaks.

Joining the Ambassador today was Bob Wright, co-founder of Autism Speaks, a United States-based non-governmental organization that works to raise awareness of autism and fund research for its causes, prevention and treatment. “Combating autism is going to require worldwide effort. It is not politically, geographically or economically centred. It is an equal destroyer,” he said.
(My emphasis.)

This is the organisation the UN chose to represent the interests of autistic people. Autism Speaks make no secret of their eugenic aims and trumps them at every opportunity. Notice that they make no mention of funding services, training, or living support for autistic people. This is the group that proudly displays a photo of Bob Wright and James Watson on it's website, along with a quote from Watson saying, 'Autism is the worst thing that can happen to a family.'

It's claimed that;

In the United States, children diagnosed before the age of three and then properly treated had a 50 per cent chance of graduating from public school at an appropriate age level. However, many African-American and Hispanic children, and children from non-English-speaking households, were not diagnosed until age seven.

Many children who are diagnosed very young as autistic, particularly as mildly autistic, lose the label as they get older. It is important to help all children as early as possible so that they receive the understanding and appropriate education (not treatment) they deserve and so their parents can learn how best to interact with them and encourage their communication. Many children, like Duncan, are unlikely to be able to graduate from a school at age appropriate level, no matter what 'treatments' I could have foisted on him when he was younger, and he was diagnosed at just over 2 years old.

Suzanne Wright, also co-founder of Autism Speaks, said 1.5 million people had the complex brain disorder in the United States, and a new child was diagnosed with it every 20 minutes. An immediate global response was needed to address the epidemic, she urged.

Ah yes, the 'autism epidemic'. That would be the epidemic which dates from the time the diagnostic criteria were widened to encompass many more people, the epidemic that coincides with the falling numbers of people labelled as 'retarded' or 'learning disabled', ie diagnostic substitution. It's disingenuous of this organisation to harp on about a non-existent epidemic, which they must know is false, to raise their profile and funding.

And get that scary statistic about another one 'diagnosed every 20 minutes', they're like Body Snatchers...

Also during the press conference, Jacqueline Aidenbaum Brandt, a mother of an autistic son, shed light on her personal experiences, including the misconception society had of the brain disorder and the concerns of parents of autistic children. She said people often mistook an autistic child for an unruly or poorly behaved one, blaming the parent instead of the disorder for the child’s behaviour. Caring for an autistic child was complex, as parents were left to grapple with whether the child would one day be independent, and how he or she would be cared for after the parents had died or were no longer able to do so.

It's a pain when strangers are critical, misinformed and lacking understanding about autism. Autism Speaks make no efforts to help here, choosing to paint autism as entirely horrible, devastating and the 'worst thing that can happen to a family.' The NAS however have at least made some good efforts to educate the public in the UK with its 'Think Differently' Campaign.'

The mum quoted above worries about her son's future, perhaps she will be canvassing the charity that claims to speak for autism, about whether they intend to change their emphasis somehow to supporting autistic adults to live as independently as possible.

13 comments:

abfh said...

In the context of Autism Speaks, the "barrier of shame" refers not to society's treatment of autistic people but to the unwillingness of many parents and grandparents to acknowledge that their child has special needs. I wrote a post about this in April:

Autism Speaks and Stigma

Patrick said...

Righton Sharon, thanks for pointing out that even the U.N. has gotten some bad guidance from the apparently eugenic minded creeps already.

CS said...

It's a shame the Wrights are polluting the UN because the UN is doing some good work.

See this:

http://www.un.org/disabilities/

kristina said...

In the same vein is Bob Wright's letter to the NY Post in which he claims that 50% of children can be mainstreamed if they start EI---here is his letter---with more military language ("Early diagnosis and intervention are the best weapons we have in the fight against a disorder that is growing in prevalence and continues to confound our best scientific minds").

Ed said...

To add to what Kristina said:
In military language Bob Wright sees he refers to as the "autism epidemic" as being caused by WMDs.
While he claims that they have already been launched (or that they are hiding in our carpets and we are breathing the air) he has already joined with others to launch his own counter attack without really getting any kind of lawful permission based on real proof.(Because forgiveness is easier to attain than permission?)

To say that early intervention is good not only requires that you ask yourself how early is early, (to really be socially conscious) it is important to (before recommending it to others) consider weather their standards of social conciousness is the same as your own. If there is a campaign to accomplish something you are against (especially if it is a big campaign) its important to think about how your recommendations to others might promote the very campaign you are against.

If the cure autism campaign didn't already have troops all over the world that had bought their propaganda about needing to defend ourselves against autism, they would not be asking the U.N. for support.

The thing is that the U.S. had to be sold on the wars in the middle east first. The U.S. needs to wake up and see how the marketing stratagy that is selling this war against autism in the U.S. has already been effective.

That includes all sutlties (sp.) such as who is funding Autism Speaks or supporting them in other ways. We need to get a firm stand from the ASA along with any and all U.S. autism groups and/or charities that are promoting a national and/or international campaign. We need to ask these fence riders this:"This is the agenda of autism speaks and some others that may be promoted by the United Nations. We need to know weather you support their agenda (which has now been made quite clear) so that we can decide weather we want to support you!"

Club 166 said...

I've never been a huge fan of the U.N. (they seem much better at talking than actually doing anything).

This resolution just furthers my low opinion of them.

Joe

Sharon said...

Abfh, thanks for the link. That's a great post of yours and I'd recommend that more people read it.
It was wishful thinking on my part that the shameful thing is society's treatment of disabled people.

Patrick and CS, do you think there is a way of alerting the UN to self-advocacy groups? It seems the least they should do if they want to highlight autism issues.

Thanks for linking to Wright's letter Kristina. He does like his fighting words.

Sharon said...

Hi Ed and thanks for your comments.
You make a good analogy with the hidden WMD's and all the theories of autism causation.

I have real problems with the emphasis on early intervention. I do think that children who show signs of developmental delay should be assessed promptly and the appropriate education made available. I dispute the theories that if you get to them early enough, you might reverse their autism somehow.

There is a marketing campaign against autism, and it does seem to be modeled on the justifications for war in the middle east. I would like to see more activity promoting the acceptance and accommodation view points and less on the war/defeat/cure ethos.

Joe, the UN has its flaws as a huge organisation, but I do think it has done a lot of good. I know too little to say for sure however, though their actions in Srebrenica and in Rwanda count very much against them.
I would prefer that we try to open their eyes to the other POV on autism issues, if at all possible.

Bozewani said...

Well, society has always ostracized me because I am autistic, however I have the minuscule of minuscule miracles to have friends who care about me, so that is my own reprieve from constant and incessant alienation.

Yet, I am happy to be myself and I always have been maltreated by society, so I learned I had to change it, be the change you want to see in the world. People always say that I am a very deep complicated person, but somehow I deduced that is their cryptic answer for "I can't help you".

Besides many times when I do ask for help, pogermine, Ayuda por favor, help me, all I get is silence and I all get is simple quiet, so I a ended up being excessively self-reliant, it's the only thing I have, and only talking to people on needs and business basis.

Of course, it's a form of apartheid, because society, no matter how much it preaches "all men are created equal" certainly does not behave in such a way. I am working on that issue.

Early intervention is bureomedical bullshit, all we need is unconditional love, that is the only thing that works, but do you believe in it?

Of course everything is so stratifed in our society, and everything is in the words of Gordon Gekko "Greed is good" and all for the bottom line.

I say, United Nations(which I am going to intern in), keep going but while I applaud your herculean efforts to understand people like me, I am wondering about your tactics.

Roman said...

Oh, I recently saw your allusions to Srebrenica and Rwanda, and as a human rights activist, I had to have a caustic and cynical, and ironic laugh. Like I said I appreciate them trying but I doubt if they are going to
1.) manifest their actions into something practical
2.) follow the right procedures in encouraging others to manifest their actions in accordance to their wishes.

Sharon said...

Bozewani, thank you for writing here. Society certainly does ostracise the autistic and those who are different. It is hard to have to rely on yourself so much, when we all would so so much better if we were appreciated, understood and supported when we need it.

I'm happy to hear you will be working as an intern in the UN. I hope you will be able enlighten some people about what autism really is and what is really needed. I agree with you, it is NOT early intervention.

Roman, there is certainly a huge problem in getting practical, useful help.

Della said...

Hello,

I work for Plum Sun Valley and we have a fabulous interview with Bob and Suzanna Wright discussing the progress being made with autism. Here is the link:
http://sunvalley.plumtv.com/videos/austism_awareness_day


We hope you enjoy.

Sharon said...

Della, did you even read any of what I posted? If so, you missed my point in spectacular fashion. You consider that interview with the Wrights "fabulous." I call it scary. They sat there pontificating about how sad and awful autism is, promoting their website which is all about treatment, not help. They even propose to put film of babies up for people to compare their own babies to?! That seems to be very strange to me.

Bob said, "These people need extensive amounts of therapy, it's expensive, it's difficult..."

That is not true. Parents are made to feel at fault for not following this line. Autistic children need to be parented and educated, not therapy.

"Christian gets 40 hours [of therapy] a week in school and between 15 and 30 at the weekend."
Poor child!

Says Bob, "We'd like to see identification of a cause and a cure."

Says Suzanne, "I want to march up main street and say, 'Autism is over!'"

Yes that's right, they want to rid the world of people like my son, and Della says that's fabulous?!

I don't like those people or their message, or that horrible puzzle piece shirt she wore- yuk!