asd: post dx what help did you get?

[notactuallyme]

Locally we have a brilliant charity help line, and some parents groups, but nothing like courses for parents. No point asking school (thinking ep or autissm outreach) as he is doing okay there, and likes the structure. Nas courses nowhere near us.any private courses anyone knows of?

We didn't get anything relevant or of value. I didn't even find out about Earlybird etc until many years down the line when I realised that other parents had been referred. I did a lot of the NAS courses which I found out about for myself. Also got onto local mailing lists - Contact A Family and independent charities, so I found out about relevant training through them.

I joined a support group but it wasn't very good. It was during the week when children were at school so only for parents. Very rare to have activities organised for the kids. I soon outgrew it as my knowledge of ASD went beyond the people running the group.

You might have to commit to travel if you really want training. Some of the NAS courses (Help2 especially) are very good for specific issues like social stories, sensory sensitivities, anger etc.

Does the NAS website not list local training providers? It's a long time since I used the site so not up to date with how they function.

Oh and ds had nothing at all through school, apart from a couple of irrelevant social skills groups, but no practical help which was what he actually needed. We ended up home educating four years ago as it was easier to go it alone than deal with damaging interference from the people who claimed to understand ASD but hadn't a flippin' clue in practical terms.

We've got no involvement with NAS now either as they had nothing worthwhile to offer.

when DD received the dx, we already had Salt. we did not receive any other help after dx. we only ever had Salt (DD's s&l is severely delayed).

however, nursery already put a lot of support in before dx and had also applied for SA before DD was diagnosed.

Thanks - seems we are not alone then. I have just paid to join Nas. So far all the courses are in wales or scotland, but will keep checking. I just want to ask a 'professional' sometimes, but we got signed off, and to be fair,he is 'well supported at home' (we're not tho! [Grin] )

Look up Ambitious About Autism!

Thanks! At work now, but will do.

Exactly. Like you have this person you are trying to raise well, and in a way where they will be happy and part of the wider world, but no real guidance. i would love to find something for dh to access other than books and me! .

lots of recommendations from DDs Paed Psych, unfortunately none have been followed up as the LA support services have shut down pending a restructuring of the service

local parent support group, fb groups, Autism Concern and MNSN have kept us going this past year

you guys rock

Thanks all - I have found a parents group. What I want is some yes and no type training really! Is this okay to allow? Is this 9 year old boy or aspergers? Etc.

They weren't chucking help at us, we had to go out there and demand it. We got a home visiting teacher 3 times a week from diagnosis (at 2.5 eldest and 3 youngest) until they started full time school, statements for them both, SALT (useless!) erm, paed appts, lots of info about support groups (which we didn't bother with) a suggestion we send them to something called "opportunity class" which was just every young child with any form of disability whatsoever gathered together in a playgroup

Think that's about it really.

Over the years we've researched and demanded accessed services as required - eg camhs right now for eldest. Which is a whole other story! which reminds me! I'll update re camhs cos you guys were really helpful.

so it's not just my area then! Interesting to hear about your parenting decision - I am trying to go with the flow, but every so often I have to decide if something is okay, or needs to be stopped - eg he would, if he could, opt out of sitting at the table with the other dcs at meals. This is getting worse. From a dislike of bananas, I now realise he can't stand chewing noises, the sight of meat (dh is not a veggie), the smell or texture of certain foods etc. He builds little barriers with cereal boxes.

I would say we have had no professional support at all!
School is on board though but they have funding problems ie don't want his ASD dx to cost them anything. He is 12yrs and I think it will be a constant battle to get more support at school which he will need.
Mumsnet and NAS has been the best support and advice to us.
Thanks to you all I have learnt a lot this past year

Hothead, I will try that book, thank you. I. Think I can't let him evolve too far away from 'normal' if you see what I mean? Ie allow him to develop habits in the wrong direction.

Thanks hothead we only got dx in march so not even gone for statement yet not sure what to do as we were told they were going to change to a new system?
We were also told statements are for primary schools?
Ds is ASD but HF and in MS school that has just changed to an academy. He is struggling but at the moment just keeping his head above water! No other schools near would suit him and he will not get on a coach either.
I think I will be spending the next year in a battle to get him support.