Powerful Autism public service announcement

And here’s the captioned version, for those who need it.

(Sorry, I’m a bit of an accessibility wonk…)

It is really really good. Well done to all involved.

lisanavi: The term you’re looking for is “augmentative” or “assistive” communication (“AAC” for short).

Roger you make good points. I don’t think ASAN ignore this exactly and – as parent to a young child with issues like yours – I know that ‘neurodiversity’ doesn’t. I think the point of the PSA was that autistic people should have a say in how the conversation goes. Is that something you agree with by and large?

Kev,

What about autistics who want to be cured of their autism?Would they be able to have this choice, and make this decision of their own free will ? Would they be able to have a say in what direction the research would go ?

This would apply to adults as well as children.

There are people with intellectual disabilities who have accepted who they are,but believe their lives would be better if they did not have these disabilities.The same goes for autism.You can make all the accomidations,and promote all the acceptance you want,but this will not turn the person with an IQ of 35 into a college graduate.

This blogger

http://www.arttocureautism.com/art/2006/03/not_all_autism_.html
has one of the most realistic commentaries on neurodiversity I have read.

Here’s an excerpt:

I know lots of families with autistic kids, and I often visit the blogs of other parents of kids on the spectrum. The truth is I don’t even relate to some things I hear and read. My ten-year old son is low functioning. Essentially he is nonverbal. He does not attend school; we provide a one-to-one home floortime program. His sensory needs are huge and interrupt therapy constantly. He has only just begun to be interested in other kids his age as playmates. He is not working anywhere near his grade level. We are working on pre-school/kindergarten skills. I have to admit that I am jealous of the stories I read on other blogs: attending school, eating in restaurants, participating in sports, working on friendships, having conversations. I want my son to do all all these things. I don’t want to minimize other family’s challenges. I know all families with autism struggle with the disability, and it is painful. There is nothing easy about it. But I still wish my son could do the things that other children with the same “label” are able to do. So in my mind, not all autism is equal.

Then I wonder. Is that part of what the disagreement is about? Is the neurodiversity group speaking from the high-functioning end of the spectrum? Is the pro-cure group coming from the low-functioning end of the spectrum? Do we really understand each other? We are all talking about autism, but not all autism is equal.

She pretty much nails it,in my opinion.

While the neurodiversity movement has done an outstanding job in confronting,and debunking the anti-vaxers,they are most likely going to be expecting a backlash from “house autistics” like myself,who do not subscribe to what are ,for a lack of a better word,insane ideas like “autism pride”.

hmmm, have you been reading Kev’s blog as long as I have, Roger? He has said that he supports the point of view of autistics who want to be cured, and he would have to support his child if xe ever expressed such an opinion.

That said, I don’t want my own son’s autism cured. I want his developmental disabilities treated. While his autism contributes to his developmental disabilities, not all autistics have the same developmental disabilities he has. However, I’ll take a wild guess that an autistic that is able to communicate will come far closer to giving me an idea of what is going on with him than a professional or another parent with an autistic child will. Therefore, the verbal autistics should be included in the conversation. groups like autism speaks either don’t include them, or only include the ones that want to be cured. ASAN seems to be the opposite. I tend to like ASA, because while it has somewhat of a tarnished history, it seems to currently provide a conduit for a variety of opinions, which is a healthy way to go at it. In the autism world, groups like ASAN have a huge voice. Outside the autism world they don’t, as is evidenced by the people I talk to whose only exposure to autism is the television, magazines and my son. I am glad groups like ASAN are making PSAs such as this.

I also believe ASAN is exactly what it says it is. Autism Self Advocacy Network. They want those with Autism to be able to help themselves. I imagine that if someone with autism was given proper supports and still wanted to be cured, they might not agree with that person but they would still support him or her. Unfortunately, I can’t speak for them. I would hope this is true.

For someone like my son, who can’t talk, self advocacy is providing him with an effective form of communication that he can use, is willing to use, and that others can understand. currently we’re using a combination of sign and PECS. He also enjoys a special communication with those close to him, or those familiar with working with autistics with similar developmental levels who can often tell what he wants by his behaviors. There are older nonverbal children in his school program that have been able to use PECS to put together sentences and get their thoughts across.

There are members of the ‘neurodiversity’ group that are not considered high functioning. many of them are only able to communicate by typing, and cannot talk. lumping all autistics that support neurodiversity as high functioning is yet another form of stereotyping.

My son is severely autistic. He is in diapers. He cannot talk. He has trouble controlling his strength and playfully hits hard. Some of those that are against neurodiversity would say he belongs in an institution. While I won’t rule that out as a possibility, as someone who accepts my son for who he is, I will do all that I can to avoid that scenario, and if it must happen, I will try to find a place that will support him, rather than simply restrain him. That is what acceptance is. It’s not saying don’t support us, don’t treat us. It’s saying treat us as human beings who need supports. Just as we would accommodate the hearing impaired with sign and captioning; the blind with braille and audio, we should help and accommodate less socially acceptable disabilities as well.

Roger, I think that the notion of cure for neurodiversity advocates is not what you think it is.

I don’t see a *need* for my child to be cured, xe seems fine and perfect to me – but maybe thats a fathers doting eye – but if xe ever wanted to be cured (and obviously such a thing would have to exist first) then I would do all I could to help xyr. I don’t think I’ve ever met a neurodiversity advocate who advocates not letting people fulfil their wishes. Such a thing (an autistic person self advocating and being denied by someone else) goes against the very core of neurodiversity.

So what about my earlier question Roger, don’t you think its right that autistic people have a participative voice in the autism debates(s)?

Roger, I’ve been involved with various people in the neurodiversity movement since 2003 and I can say, hand on heart I’ve never heard anyone say they would hold an autistic person desiring a cure in low regard. I’d also have no truck with a movement that excluded low functioning autistics as my child is low functioning/severely autistic.

Could you show me a link or two of the sort of thing you’re describing going on?

Of course I do,but from what I have observed,a large per centage of the neurodiversity movement is not willing to listen to autistics who do not believe as they do.

I don’t think this is true. In fact, many ND autistics engage Mitchell, Cresp, Crosby on a regular basis, even though this is clearly not a good use of anyone’s time.

Many claim to speak for all autistics,when clearly they never can.

I’ve seen this claim before, and yet no one has been able to produce an instance of an ND autistic claiming to speak for all autistics.

One problem is,obviously,the higher functioning autistics,and mostly non autistic aspies,at that,have dominated the discussion far too long.

Autistics who actively oppose neurodiversity are intellectually high functioning too. Do you see why this is?

I don’t think this is true. In fact, many ND autistics engage Mitchell, Cresp, Crosby on a regular basis, even though this is clearly not a good use of anyone’s time.

Clearly,we are never going to get anywhere,with an attitude like that.If ever an issue called for open debate,and listening to all sides,this is it.

My first exposure to neurodiversity was reading message boards like Wrong Planet,and Aspies For Frreedom,and reading news stories about Autistic Pride Day,an idea I still offensive.I once tried posting over at AFF,and I was banned,because they said I was fear mongering,by portraying autism as being worse than it really was.This proved to be a recurring theme,in every neurodiversity blog,video,what have you,I have seen.

Even if they do not practice censorship.

Roger, I’ve been involved with various people in the neurodiversity movement since 2003 and I can say, hand on heart I’ve never heard anyone say they would hold an autistic person desiring a cure in low regard. I’d also have no truck with a movement that excluded low functioning autistics as my child is low functioning/severely autistic.

Could you show me a link or two of the sort of thing you’re describing going on?

Well how about this:

The defining characteristic of a curebie is a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil.

http://autisticbfh.blogspot.com/2006/09/defining-curebie-ism.html

It is this seeming denial of severe disability,be it low functioning autism,or autism,with mitochondrial disease,that is my number one complaint with many people who advocate neurodiversity.

Certain neurodiversity activists,and bloggers,will claim that the way autistics are treated by society is worse than anything that autistics will experience from their disease.

This is as good an example as any

http://autismcrisis.blogspot.com/2007/02/autism-advocates-do-not-take-autism.html

I say that’s bull.Yes some of the statements Ms.Dawson cites are pretty horrendous,but no more so than being a child who has been eloping,who has just come around from a state of semiconciousness,and found they have wandered for miles,and are completely lost.Seizures,stroke like episodes,self mutilation (Which you rarely outgrow.),destroying furniture,electronics etc,and not being able to stop yourself at the time.severe social isolation,and lack of verbal skills.Nope,none of these are as bad as people saying you’re worthless.

Sticks and stones,and all that.Many autistics,myself included,have such emotional impairments, that we are unaffectedd by what people say about us.

I see things like the stink that was raised a few years ago over the video “Autism Every Day” and the “Don’t Speak For Me” campaign as a prime example of neurodiversity denying how severe autism can be.I’ve seen “Autism Every Day”,and I find it pretty mild compared to how I acted as a child.I see this latest video as more of the same.The message I took away from “Autism Every Day” was not that it portrayed autism unrealistically,but that the parents who were complaining about their children,clearly were not getting the right kind of services,and support,or enough of it.

Autism for me is part of a complex medical syndrome,I cannot separate one from the other.Those who say their autism is an integral part of them,ought to be able to understand this.Infections, seizures,and metabolic strokes,all make my autism worse,and all are frequent occurrences.It varies greatly in severity.One feeds upon the other.There is no joy in in,to quote one blog,I find especially unreadable.This is why I am pro-cure.