did anyone see this article about autism activists in the observer this weekend?

[Heathcliffscathy]

v provocative article...i wondered what you all thought...

here

[Blu]

To be brave, and start?

I thought that interms of v high functioning autistic adult, they made some v powerful points, about people accepting them on their own terms.

BUT I thought it potentially confused the picture a lot in terms of severely autistic children who really are not able to live in the wider world independently, and I think if I was the parents of a severely autistic child, I would be furious at some of the vague implications that it is the management of autistic young people that causes some of the rpoblems.

[Heathcliffscathy]

it never explicitly said by their parents tho. i thought that too. but i guess my take on it was informed by the antipsychiatric reading i've done which gives a totally different take on schizophrenia to the one that most people hold i.e. that it is a label given to a set of behaviours in individuals that society as a whole cannot and will not tolerate and therefore uses chemical koshes (sp?) to remove from the public eye. NOT equating autism with schizophrenia, just wondering about the medicalisation of psychological-social-physical conditions that are not at all understood by the medical community nor by most of us. blu you've just said what is disputed by i think dr lesser in the article i think i.e. you're high functioning you have no right to pass comment on autism in general as it's different for you and you can function fine in society...he disputes that strongly...

just interesting to think of us all on the same continuum with autism one part of that....and to look at the way autistics see the world as something different rather than damaging. i know that is cold comfort to the mother of an autistic child who's life is hell, but is that not to a large extent because society is totally unaccepting/unaccommodating and uncomprehending of the condition and therefore it is impossible for the family to get the kind of support and help needed.

don't want to stir up terrible row, and am really sorry if even posting the link and what i've already said has pissed anyone off....but i found the article really fascinating....

[Heathcliffscathy]

that should read different rather than damaged

[Blu]

I know - about my view being the one he disputes...but what do you do if your child's autism is in reality a physical - possibly mortal - danger to themselves and potentially others?

Will read it again more slowly.

[coppertop]

I agree with Blu's post. The autistic spectrum is so vast that what may be true for one section it will not necessarily be right for others. My two boys are high-functioning so I can understand the pov of the people in the article. I doubt I would see autism as some kind of gift though if my sons were at the opposite end of the spectrum.

[Heathcliffscathy]

sorry: i wasn't having a go blu!!!! i've just read the website gettingthetruthout.com and actually it explains it better than the article does....it's saying that both autistic people and their parents are victims of a society that medicalises and tries to 'cure' anything it doesn't understand.

[aloha]

I honestly don't think anyone tries to 'cure' austism these days.

[Blu]

no, no, I know you weren't having a go...

[baka]

My sons's difficulties with life and living have nothing to do with society and the way they view him really. His problems stem from his compulsions, lack of langauge (which = cognitive difficulties) and complete lack of understanding of danger.

I like the stuff Jim Sinclair writes and have a lot of respect for him- and I know a number of people who attended Autscape. I found Jim Sinclairs "don't mourn for me" incredibly moving (worth 100 welcome to effing Holland's) I have no problem with adults with HFA not seeing their autism as a problem, being themselves etc and expecting society to make some accomodations.

Some do assume (incorrectly imo) that thier experience is the same as a child with severe autism (having said that Jim Sinclair didn't talk until his teen iirc so he should know what it's like). However if you read/listen to stuff by adults who are still severely affected - eg Lucy Blackman, Roz Balckburn, they see their autism as a PITA because it gets in the way of who they want to be. Both are driven by compulsions which make normal life and independent life an impossibility. Roz Blackburn may be able to stand up in front of several hundred people and give an excellent, amusing and well delivered speech, but she's still in nappies (mind you I don't think she minds much about that- I think she;'s just pissed pff that SS are in charge of her care). Even Donna Williams who is very famous in the autism world and very outspoken does not exactly celebrate her autism. I heard her say 2 weeks ago that it was in many ways a hinderence.

I always say I have no problem with my son's autism- just with the fact that he will probably never live independently. I wouldn't care how autistic he was if I thought he would be able to exercise control over his life and do what he wanted. I said that to Donna Williams and she wasn't offended, just told me not to assume that he would never live independently.

[baka]

Actually a lot of American organisations do talk about "recovery" ie cure. There are organisations "CAN- cure autism now" and DAN 'defeat autism now'. I can understand why those names would annoy someone who was HFA - but I think they miss the point a little. A lot of people who would be using those services (and I would consider a DAN dr, although we haven't ever seen one) aren't really trying to cure- they're trying to make their children high functioning- ie like the people who are doing the complaining. Having said that maybe people do start off aiming for a cure until reality gets in the way.

RnB or JakB or Davors gave some figures- think its about 5% of children with autism recover totally.

[Blu]

Have now looked at much of 'gettingThe truthOut' - and I think it is an amazing site. I have long agreed with what is said about imagery of autistic people, and the description or expectation of peopel witin a v narrow norm. This is v much in line with radical disability politics across a range of disabilities. Politically, I agree completely. Of course hand-flapping and block-watching should be embraced as the behavior of an individual on their own terms. I think there is a slight muddiness between talking about the patronising 'charity' view of the world, medicalised categoraisation of people, etc, and the ethical decisions that are necesary when dealing with things which really ARE anti-social - like deadly self-harm, (which in any case may not be the free choice of the individual, but an unwanted side-effect of an action) or harm to others.

Very illuminating post, baka - thank you.

[baka]

Just read the getting the truth out website and funnily enough when I saw the picture of the communication board I thought something along the lines of "but that's good it allows communication" whcih is what the author of the site then goes onto say. Have only skim read so far, but I will go back and read it all when I have the time. it looks interesting. I probably won;t agree with everything it says - but I think that I will probably agree that the author feeliing that way is perfectly valid iyswim.

[baka]

ha ha agree with her about the nappies as well. Ds1 was trained early (at just under 5- he's one of the few who is toilet trained in his school), but it always amazed me at how horrified so many people were about the nappies. Really it was the least of his problems.

[PeachyPlumPudding]

Yes, for a person with AS such as Sam they have a very real point. It doesn't help much for anyone more severe though does it? We have the NAS unit for the area directly opposite. Sometimes the noises that come from there are depressingly familiar and Dh and I glance at each other and say 'goodness, they ahve Sam's twin in today'. Mostly though, there is little correlation between Sam and the clients there-certainly Sam is very confused that he has the same disorder. The gulf between severe and HF is amazing really.

Of course, it's a double edged sword: separating the two would make it even harder for us to get support for Sam, something we already struggle massively with. And it's not to say Sam doesn't have his own problems: I worked with young adults with ASD for a while many years ago, and Sam is far more violent than the majority of our clients then. But I do feel that he has a lot to offer if only people could get past what he's not. he's not sociable, descriptive, emotionally aware or ginving. but he IS highly intelligent, clear minded, analytical. In fact Sam is like many a job description, with the added bonus that the more times he does something, the better it gets (coming from someone with an attention span of 3 minutes [grin).

I don't know. How about a website asking people to look beyond the problems and at the individual? That goes for physical disability, mental health, the lot. (And mingers like me too I guess ).

You know what? I have just decided I like the article. Why? Coz it got us all thinking. And surely that's good.

[pixel]

I very much doubt that my son cares what society thinks of him, or is even aware that others may have an opinion about his behaviour. If he ever gets to the stage where these things concern him, I'll be overjoyed.

I agree that society in general should be more tolerant and understanding of people whose behaviour seems 'odd' and not automatically assume they must be stupid or weird. However I do resent being portrayed as a 'grieving' parent, weeping and wailing over my son's condition and making his life difficult. It may seem strange to some but I do actually enjoy his company. He is sweet natured and has a good sense of fun. But, I do have to try to help him to live in the same world as everybody else. I'd love someone to tell me how to do this without trying to change any aspects of his autism.

These HF activists raise some valid points about wanting to be accepted as they are and allowed to deal with their lives in their own way. That's fine for them. I'm just assuming that most of them wouldn't walk out of the house and get run over by the first car that comes along if left to their own devices.

[jenk1]

for me this is strange, as a few of you know i was diagnosed with AS this year and i have always personally felt that there is "nothing wrong" in the way i think,feel,act,have obsessions etc and that im comfortable with it and i dont care what other people think, but then im HFA and in autism thats more severe in say my sons case, he is in some ways like a toddler, he,s 9 but we cant let him out to play with the other kids on the street without one of us watching him cos he runs into the road and stops to pick up things that take his fancy, etc now for him i dont see his autism as a gift i mostly see how it makes him struggle and that DOES make me sad as a parent, but im not weeping and wailing though, i hope im making sense its like i feel im contradicting myself because i dont see it as a problem for me but i do for my son, hope this comes across in the right way its meant to, IYSWIM