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autism article

14 replies

JJ · 27/09/2003 09:45

There's a very thought provoking article on autism in Salon. Planet Autism

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janh · 27/09/2003 11:13

Blimey, JJ. I just read it and feel too overwhelmed to read the related links yet.

I get the impression, from Jimjams particularly, that even though provision is patchy here and parents often have to push for what their children need, there is much more help available here than in the US, because of the NHS/Welfare State presumably. (His comment about not mentioning autism in the Emergency Room because HMO's don't cover it was telling.)

Jimjams · 27/09/2003 11:16

Yes well that was depressing. This is why I don't think more than a month ahead. (don't think ds1 is that severe though)

janh · 27/09/2003 11:32

I've read "Faith in the baby" now and feel better...

janh · 27/09/2003 11:32

jimjams, read Faith in the baby, it will make you feel much better too, promise.

Jimjams · 27/09/2003 11:46

nah Faith in the baby is depressing as well. That kid was way ahead of ds1 at the same age.

Actually disagree about help as well. In the US autistic kids all seem to get SALT. Even those with parents in welfare (they just get it tice a week rather than 3 times). Also these days (so not really relevant to the article) most seem to get access to ABA as a teaching tool.

Think I'll stop reading now.

janh · 27/09/2003 12:02

Oh - sorry, jimjams - shows how much I don't know...

OTOH your DS is affectionate and does relate to people?

fio2 · 27/09/2003 12:25

Sorry havent read the article but jimjams dont get down about it please. I have been on that specialchild site soooo many times reading up on rare syndromes I could explode without reading another article Please be happy jimjams, did your SALT session go okay BTW?

aloha · 27/09/2003 13:15

There's an nteresting,moving, well written and (I think) less depressing article in this month's Vogue by a mother of an autistic child.

hmb · 27/09/2003 14:29

Don't want to come across as a pollyanna type, Jimjams, and I know that you (rightly) get fed up of people making crass and silly comments, but your ds sounds as if he has made some very substantial improvements over the last few months. And ASDers do have very idiosyncratic learning curves. I just with that you could get him the SALT he needs....if only there was any sense in NHS provision

JJ · 27/09/2003 17:34

Oh, I'm so sorry I depressed everyone.

Jimjams, I think (can't really remember anything atm) you said that your son might not benefit from ABA, but... if you'd like, I can email my sister in law (husband's sister) who has a son the same age as yours with autism (some of the things you describe about yours sound similar to hers) and get you guys in touch. She set up an ABA program for her son (not state funded, unfortunately). She's just recently helped me out with some things-- as she was talking, I thought of you (esp with a game designed to help kids accept that certain things are "impossible" sometimes) and I'm going to email her soon for advice about my son's speech problems. (Thanks for the Babytalk recommendation, by the way.) I'm not very close to her and haven't been able to get to Chicago to see my nephews for over two years, so can't give you a great deal of detail. I'm sorry if I haven't offered this before! I think I had in my mind that you weren't looking for ABA ... sometimes I get very very confused. My brother in law (sister's husband) was also an ABA therapist and might be able to make recommendations, if you'd like?

I like my sister in law, but she's a bit ott. Her first reaction to my worrying about my son's speech was "have him evaluated by a speech therapist". And I was just looking for a bit of reassurance. My brother in law is a bit more calm and "big picture", for lack of a better word.

About the gov't support: some states' birth to three (sometimes five) programs are excellent. That is the absolute only thing where the US beats the UK in social safety net. My insurance does not cover what they see as developmental issues (eg speech therapy). And I've got great insurance. For all its faults, I think the UK has an amazing social conscience which is evident in the spirit, if not always the practice, of its social services. (That being said, I've had to stop reading posts about the lack thereof because I end up wanting to go punch people hard in private and painful places.)

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JJ · 27/09/2003 17:50

Just getting a bit paranoid, but to clarify:
my sister in law (who I do like) has always been a bit ott, pre- and post- kids. I was just saying that she's like that. Always has been, probably always will be. It has nothing to do with her having an autistic son.

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Jimjams · 27/09/2003 19:43

Thanks everyone. Sorry bad day today- well not really more like a bad night last night- ds1 was awake from 1.10am until gone 5am- on top of a similar night on Wednesday, so I'm exhausted.

Thanks for your offer JJ, but you are right I'm not really looking at an ABA programme as I think it would be wrong for our ds1. I think it's just one of those "I should be doing more" panic attacks that happen every so often. Davros has been giving me useful ABA methods to use at home annyway and I've ordered a book she recommended.

Fio I well remember the awfulnes in trawling websites trying to find out what was wrong. Everything kind of pointed to autism althogu he didn't line things up and wasn't bothered by change (hooray) and then I found hyperlexia and though "eureka he's not autistic he's got hyperlexia" and then of course found out that that is just a possible symptom of autism. Horrible time. Keep smiling though...... There is someone in ds2's swimming group going through the same thing at the moment.

Jimjams · 27/09/2003 19:46

oh and SALT went well thanks fio. She brought cars......

Clarinet60 · 20/10/2003 13:58

The article is really moving.
I'm sorry you've been having a bad day.
Words can't really express any of it, can they?
Thinking about you all anyway.

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