My son was just diagnosed with high functioning autism. I know that the online autism world is full of woo-woo cures and causes and I want to avoid wasting my time on these places. I want to read and share thoughts with intelligent and rational parents of autistic children and not have to deal with the anti-vaccine nutters out there.
Basically I’m looking for a SDMB for parents of autistic children.
Any recommendations?
I don’t have any recommendations myself, but I do know that there are Doper parents with children with autism. I’ve PMed a couple of them to make sure they can’t miss this thread. Since I don’t know what time zone they’re in, it might be a bit before they can get in here. 
Thanks WhyNot and ratatoskK. That AANE site seems like a good start.
I don’t really use on line resources. There should be plenty of good ones and i posted one below. I work for a Fortune 100 company with a very active employee autism group and resources, and that’s what I rely on.
First off, you are now in a club that you never wanted to join, but it’s full of really helpful people that have been there, done that, and deal with it every day. I know it can be very overwhelming, but don’t be shy about sending up a flare for help. Other parents are usually very willing to have a quick call and share experiences and thoughts.
Second, not sure your work situation but check around (HR) to see if there is a work support group. Also, what benefits insurance may provide.
Third, check out Autism Speaks and look through the 100 day kit. I didn’t follow it per say, but it’s got a lot of good information and I should look at it again.
Fourth, even with government cutbacks, there are government related autism resources in your State. At least here in Washington, it is a long wait so try to get started.
Fifth, the Children’s Hospital in your area probably has an autism center. I would get connected with them. There may be other neurological issues or sleep issues or other austism related things that they can help diagnose. They will certainly have a parent support group, education sessions, recommendations for other groups, etc.
Sixth, there is a lot of mis-information out there. Christ almighty, you should have seen the emails and boards light up on the whole repudiation of the vaccination cause for autism. The vaxers are still out there and looney as ever.
How old is your son? What State are you in? Good news is if he is high functioning, I guess that means he has some speech and communication skills, and you start focusing on how to reach him (and get help) then he’s got a bright outlook.
Best of luck and feel free to IM me.
thanks WhyNot for pinging me on this thread.
Good luck.
Thanks China Guy for your thoughts. I’ve been putting off coming back to this thread as I’m still trying to get my head around this, but I know that you put a lot of work into your response and I owe you a reply.
My boy is 4 and a half. He’s generally a happy little boy that adores Lego and imagination play using action figures, Lego men, etc. He’s bright, notices everything, speaks well and has a very good vocabulary. He also has attention problems and problems following tasks without instructions being repeated.
We had him evaluated at 4 because the pre-school flagged him with developmental, social, and gross/fine motor delays. The pediatrician evaluated him by talking with him and getting him to follow along with a story book and asking things like “why is the little girl in the story doing that” and “Does she look happy or sad?”. He aced this and our doctor told us that our boy was the human equivalent to a lab puppy and would grow into himself. He made available the option to rebook should things not change, but he didn’t think that would be needed. We, the parents, were very relieved and rested knowing our little boy was “normal”.
He didn’t improve. We brought him back for another eval to the same pediatrician, and he was more concerned after this second eval. The doctor actually come out to our son’s pre-school for 2 hours and observed him playing and interacting with other children.
After that he called us to tell us his diagnosis has changed and saw autistism as a real possibility, mainly due to social and behavioral clues. Our boy “parallel plays” and doesn’t participate with the other children. During group activities he appears lost and wanting to join in with the fun but not knowing how to contribute. He doesn’t seem to empathize with others feelings nor follow simple social rules like saying goodbye to his friends.
The pediatrician won’t make a final diagnosis as he wants to refer us to another pediatrician/psychiatrist team that specializes in diagnosing autism, but he told us that it’s almost certain that he is autistic. On the plus side he said that our boy is high functioning, and with therapy and behavioral teachings there’s a good chance that he could be “mainstream”.
We have been referred already to our provincial health care system for speech and occupational therapy, and the pre-school is applying for a personal teaching assistant to help during the day. We do have good insurance, but our doctor suggested giving the public system a try first as they can do good work. Also, because he was diagnosed before public school age his therapists go through the public health care system, even after he joins school. If he was diagnosed next year while attending public school his therapy would be the responsibility of the public school system, which is much more overworked and underfunded.
If it’s HFA or Aspergers, then with therapy we hope he’ll have a chance to live a good life (?). I guess in the end we should count ourselves lucky as we know others have it much worse.
The other part in this is that my wife and I have been trying for years to have a second, and she was actually due to start a drug course this month. Our doctor told us that autism may have an inherited genetic link and the odds could be as high as 10% of a second autistic child. Again, we should be counting ourselves lucky to have one little boy who loves his mommy and daddy.
For what it’s worth, I think you all will be fine. You’re switched on, recognize the challenge, and getting help. Your son at least has speech and doesn’t have to struggle with that. IMHO he is high functioning. It’s highly likely that he will mainstream. Heck, Bill Gates is likely to be Aspergers.
Austism diagnosis simply speaking goes down a behavioral checklist. Enough boxes are checked and there’s your diagnosis. Of course, if you compare your son with neurotypical peer, some of these behavioral differences will be obvious. In my case, we have twin girls so there has been a obvious benchmark from day one.
There is no identified cause. That said, in the high tech industry, austism is something like 1:80 versus the rest of the US at 1:115ish. The thinking being you take two people on the autism borderline and chances are much higher that their kids will be on the spectrum.
Here is a videothat may be difficult to watch (it was emotional for me) but it’s a feel good story about Carly Fleischmann. It should give you some insight and I don’t want to give any more spoilers than that.
Again, there will be days you might be paralyzed and not know how to get started. Or in my case, know how to get started but actually starting was overwhelming. Ask another parent or an austism support group for help. My experience is that someone out there will respond practically immediately and help you get over that hump. Good luck.
I’ll watch the video at home when I can be alone with my feelings. Thanks for that.
Also, it’s interesting that you mention that borderlines seem to have a higher percentage chance than normal. My wife’s father is, IMHO, borderline to outright Aspergers and my wife says that in her readings about adult Aspergers that she seems to fit right in there as well. I’m in high tech and I’m introverted. The poor kid had the odds stacked against him.
Thanks again. You’re good people.