Autism v. Other SN

[donkeyderby]

I am finding that locally, services for ASD children are expanding and improving. Can I stress right from the beginning that I do not begrudge this - the more help parents receive, the better and there are an awful lot of ASD kids being diagnosed out there who need specialist help. I also know that the services are not perfect and parents of ASD kids still suffer. I'm not trying to start a fight!!

However, there has not been an expansion in services for children with disabilities that do not fall into the ASD category, but still present similar management problems, notably behavioural issues.

Examples include: An ASD parent's group with lectures, email forum and regular meetings set up by Education: A monthly film showing at a local cinema that used to be for chldren with special needs and has morphed into one for ASD kids only: A siblings group run by the Carers Society that is now only for siblings of ASD kids. A reluctance to use PECS in local SLD school unless child is on the spectrum, despite proved efficacy of PECS for certain non-ASD kids. Pre-school Up to 30 hours per week per child ABA therapy funded by LA (though I think that's being withdrawn).

There is no local training available for managing challenging behaviour in SLD kids without ASD - something I know many are in need of. There are so many children with very autistic behaviours who do not exactly fit the profile of ASD, but whose parents struggle with many of the same issues and get no help.

For nearly a decade, I have repeatedly approached the local (LA funded) parents group to design some training around SLD and challenging behaviour but to no avail.

Any ideas how I can push our non-ASD kids up the agenda?

Is it worth approaching the local Mencap? They may know who to lobby for funding. Our local group got some money for horseriding last year from lottery money but it needed someone to apply for it. You are right - busy kids are usually happy kids - and more relaxed parents! The EDCM (every disable child matters) consulation is happening here so it is a good time to point out gaps in services.Good luck!

donkey - the issue may be LD's rather than ASD iyswim. My son is severely autistic with severe LD's and cannot access most of the autism specific events. In fact he can only access ones aimed at kids with LD's.

I've come to the conclusion that it's to do with cost. Staffing levels for children with SLD"s needs to be high and staff do need to be trained. SO it's hard to access. Just keep kicking up a stink. Crap about the PECS though, that is a bizarre decision.

Here everything I've access for ds1 has been for ASD & LD's. No need for an ASD dx.

I so agree with you Jute about the lack of help for LD's due to cost. The more the LD, and the more it imapacts on behaviour, the less likely any services will include our kids, autism or not. Our local autistic society used to refuse entry to severely autistic children and I have heard on another forum of other autistic societies throwing kids/adults out when their behaviour becomes too challenging.

Re. the services I mentioned, I think the worker who has headed ASD services has done a good job, but it hasn't benefited kids without a ASD diagnosis, in fact, in the case of the cinema club and siblings group, quite the opposite. I think LD's need their own champion.

Yes I agree.

The best stuff I've found locally has been organised by parents so for example one mum rang the local climbing centre and arranged for everyone to go she then asked the NAS to pay for it (which they have) maybe something similar could be organised and Mencap asked to pay for it. It certainly would have been open to anyone with a child with LD's ( I was banging on that it had to be accessible to everyone).

I find most of the organised autism stuff assumes a much higher level of functioning than ds1 has.

Maybe put a piece in the local paper asking for interested parents to contact you, that's been done locally too. To good effect.

"In our group, we don't intend to recruit helpers in any great numbers as it is for parents to attend all events with their kids,"

see this always counts me out as I have 3 children and cannot manage all 3 of them by myself.

The cinema club should be open to all & siblings group. Who funds it? I'd go along anyway!

Those who need it tend to bring DP workers to help. That's all we can do at present, as we are poorly funded, and not childcare provision or 'a service' as such. More of a mad bunfight but it's fun! We just try and provide a secure premises and look out for each other's kids. No professionals or paid workers involved and we are all knackered parents just trying to get something off the ground while looking after challenging kids.

Yes, I'm going to the cinema anyway! Willing local cinema thought it up and helped out by local SEN parents group.

google pagforspecialplay

the site isn't great, but it'll give you a few ideas - as we are all volunteers we don't update it often enough really...

we apply for money from everyhere tbh. we've had big lottery, awards4all, nominated as local mayor's charity for the year, local council funding pots, nominated as local golf club charity of the year etc etc.

there is an e-mail contact on there - not sure if it's mine or the general info one... should really know that i suppose...

we are listed on national volunteers web pages and the volunteer bureau sends us details of people who would like to help - we crb them and interview them etc...

quite a lot of our families have more than one sn child, and we like our activities to run on peer group activity basis (except for the panto and family festival obviously) to give both parents and kids some time apart.

our only problem is that for insurance purposes we have to have a parent or carer in the building, so although they get an hour off, they still can't go to tesco... it gives you and hour to have a coffee and put the world to rights knowing that someone else is teaching little johnny drumming or drama with his mates though...

don't talk to me about all committeed up - i've got one of those faces i think and have a real problem saying no....
last year i even ended up with a (second) job i didn't want, all because i made inappropriate 'keen' noises at the wrong moment. it took me four rmonths to resign because the first time they told me i needed longer to think about it... eh?

madwoman, I've got one of those faces too, but not the organisational skills to go with it! We actually have a charitable afterschool club and playscheme in town, (set up by parents - surprise surprise), and parents can get a break through that - if they can get a place of course. I'm on the committee of that too!! With the other group, we are not in the position to expand into charity status....yet. Watch this space though, we are working on it!

Thanks for the funding advice and link - wonderful - will give it a butcher's.