Recently diagnosed with autism - need advice on therapies etc.

[Homsa]

After a year of uncertainty, my DS (just turned 3) was finally diagnosed with autism last month. He will start at a nursery for autistic children at the local CDC in September, for 2.5 hours three mornings a week. They use the TEACCH programme there.
I was wondering what kind of help kids in other areas are getting, and if you're supplementing this with any therapies at home. And if so, how did you go about organising this and do you get any extra funding?

We did Gf free for a year following results from Sunderland. Initially it did make a difference, ds was far more accepting of a wider food variety and seemed to be less remote. After a year on th e diet we introduced gluten back to his diet with no ill effects.

I attended Earlybird at my cdc and found it useful for meeting people in the same position. In my area the course is only offered to children who are likley to need an sn placement at school age.

We use visual methoods a great deal. I find visual timetabling actually works better with my more able youngest son than his older brother as he has more need to know what is happening and gets frustrated more quickly.
We also use signing, Makaton and Paget Gorman and have found this helps focus the childrens attention when they are being spoken too.

Most of all though I have found a good school placement that helps a child reach their potential and supports parents to be a Godsend.

Hi

My son as also recently dx'd, but we knew it years ago he's 6.5 tho) my youngest ahs just been referred by HV also, but don't think it's AS tho he does seem to have traits- will wait and see.

ABA has a good reputation, definitely worth a look. We use the BIBIC approach (www.bibic.org.uk), which is different in that it does an assessment and then targets therapies- which are activities, excerceises etc you do at home- to the child regardless of DX. Their fundraising team helped us obtain funding, and I would recommend it as useful for us (the support system also)

Thanks again, lots of good information here!

Davros, I've ordered the book you recommended. I've actually just finished "Let me hear your voice" by the same author, which I found really inspiring. Has anyone else read that, and did you find it an accurate description of a home ABA programme? I thought the way the programme was introduced was really harsh, do they still do it that way? (reminded me of an exorcism tbh)

mamadadawahwah, thanks for the links, I will check them out. that was interesting that your DS used to wake up laughing in the middle of the night. Mine is a really good sleeper, but every once in a while (maybe once or twice a month) we wakes up in a really weird state, crying inconsolably and wanting me to hold his feet, which appear to be incredibly painful. There don't seem to be any triggers for this, or at least I haven't been able to spot any. I used to think these were growing pains, but now I'm not so sure. DH thinks it's some weird neurological state that's connected with his autism.

This is the first I've heard about the Sunderland test, good to know there is such a thing!

Jimjams, what you're saying sounds very sensible. I think I will give these things a try eventually, just to be on the safe side, but it's not a priority atm. He's already taking cod liver oil, but I can't say I've noticed a difference. But then again, you can't really be sure, can you? (unless it's as obvious as with your DS's headbanging) DS has actually improved quite a lot in recent months (this started before we started giving him the fish oils) - he's become much calmer, more "connected", stims less, is even saying a few words now. Had I been trying any interventions, I would probably have attributed this change to them.

yes that's something to be careful of. Inour case any successful biomed interventions have been very dramatic and sudden (within days) and easily scorable. Not kind of vague getting a bit more focussed.

Biomed is more likely to be of use if your son has a history of eat infections, eczema, lots of antibiotics, bad reaction to jabs etc.

Homsa, another good book re: biomed, if someone hasnt already suggested it is Jacqueline McCandless' "Children with Starving Brains". get it on amazon pretty cheap. Its my bible though there are few new ones out. We follow her "protocol" and havent gone wrong yet.

Our boys improvements werent wow like, but are gradual. We look back now over the last six months or so and that is when we really see the improvements. For starters, he is beginning to learn much better from his aba sessions, limited as they are.

LOng way to go and its a "marathon, not a sprint", its expensive and its frustrating but for us, its been a godsend in terms of reduced behaviours sleep and general health particularly digestive health.

The feet thing, well I would guess that a reflexologist would tell you more abou this than me, its all connected. We had our boy at a relexologist and a cranial osteopath, both of which were very interesting in what they told us.

NHS can start you off on tests but you must ask for them, sometimes demand them. We had a whole host of blood/urine tests done, some of which were useless, but the vitamin and lead were of interest as were the amino acids. They will do a thyroid test but wont tell you about ts3 (important marker) unless there is a real problem with it, a big problem.

WE have all our tests done either at Dr Heard or through IWDL both in the UK. We discovered our boy has immense gut problems and in particular has a low resistance to measles, which is as bad as having high receptors to measles.

Anwyway, i gave you the link to "treatingautism.com" and they can help you immeasurably if you wanted to go down this road.

I of course, highly recommend it.