Tell us what you think about services for children with autism!

[ClareTalkaboutAutism]

Hi all,

I am Clare, Policy and Public Affairs Officer for Ambitious about Autism (formerly TreeHouse), the national charity for children and young people with autism. We are running a survey seeking parents views of SEN policy and your experiences of it.

We would like as many parents and professionals as possible to complete it and the results will inform the campaigning work that we do. You can find the survey here: www.surveymonkey.com/s/SFFMGZ3

Please do take five mins to complete it and pass it on to anyone else you know who might be interested.

Will be sure to post our final response here too. If you have any questions please do get in touch.

Thanks in advance

Clare

You mean there are services for children with autism?! Well bugger me, you learn something new every day .

Ds got a diagnosis then we were left to it. Any support and advice we had we found ourselves. There wasn't a thing from the LEA or medical services that wasn't standardised and unfit for purpose. The scant few services we were offered were in fact damaging to him because he wasn't an Aspie stereotype.

Sorry, it just makes me very angry to think of what my ds went through and how much he suffered, and is still making up for .

My experience has been very similar to Streaky's. No help. No advice. No support. A one size fits all approach which consists of social stories and visual timetable.

What annoys me more than anything is that these 'experts' have nothing to give us, yet don't let us get on with it. So if you are trying to establish the sort of help your child needs at school, school and the EP etc will resent your interference despite the useless application of their generic strategies which clearly aren't helping.

Also, many of these services function without a need to know the child e.g. ASD outreach, EPs etc. Often they'll come in and give targets/strategies without even having met your child. That is a disgrace.

And the strategies are used for 'control' and not 'empowerment'. Equiipping a child with skills takes too long so let's just focus on those bits of their behaviour which annoy us.

Services? What is this word and what can it mean? Are there some? Ones that parents don't have to sue or go to tribunal to get? There's certainly none for adults in most parts of the country either. Makes one wonder what the Autism Act was all about, apart from a politically correct exercise.

Hi Clare!

Done

There aren't any

We have been very lucky so far - apart from being turned down for OT and having very sketchy SALT, DS has been given great help through Portage via a specialist teacher.

What worries me is what is going to happen from now. We will recieve Portage until the end of the reception year, then we will move to the inclusion support service. I have recently heard that this is being cut from 28 posts county wide to just 4 . This service looks after all disabled children in mainstream within our county (so a hell of a lot), and this is being reduced to give each person either a crippling workload or the whole service will be cut back.

Done.

Services?

Oh that bit where your told to do all the things your already doing and left to it.
The bit where the EP hasn't even met your dc... Yet can write a report about them.

The bit where you are left to explain what ASD means to your child and then have to fightfor simple no cost strategies that would allow your child to access an education or be able to use a toilet during the school day. To be met with a screaming banshee of an ill trained SENCO when you question these things.

And the services that are heaving under the weight of those trying to access them and yet are taking cuts left right and centre, oh and the charities that could help are having funding cut.

All we have recieved is portage waaaaaaaaaayyyyyyyyyyy back, and the early bird course. That's it... no handholding, no reassurance. Nuffin.... both have been stopped.

I am very concerned about the children coming into the system now, I don't see a good future waiting for them tbh

What services?

Have completed the survey.

done survey

Services? Do they exist?

Ds is 12, first started having difficulties at 2. I'm still waiting for someone to tell me about the existence of Early Bird, let alone offer it.

I haven't done the survey because it will just make me cross. Lost count of the number of similar feedbacks I've given but nobody takes any notice, so what's the point?

Streakybacon - we have the Earlybird programme in the City, but its only for city parents, as we live 100m from the city/county boundaries we cant access it.

zzzzz - possibly. I know you can't access Autism Outreach without a firm dx in these parts - I guess it will be the same in other areas too and for other services. All down to budgeting and justification, innit?

Mario - true, it's just not fair about boundaries. In my case I'd just like to have been told that the programme existed then I might have had a chance to fight for a place. Every other parent I know in this area has been offered it and most have done it - no idea why it was never mentioned to us .

But I think that's a large part of the problem with access to services - there just doesn't seem to be any consistency, not just from one LEA/NHS district to another, but within them. For example, I know no other family who has gone down the same diagnosis path as we did and nobody can explain it. Just bizarre.

I'm with you streaky! Sounds like you could even live not too far from us. We got DS's dx of Aspergers after being referred out of area in the end as no one is commissioned to diagnose school age children here and we just went round in circles with DS out of school until we stumbled on that fact and it all suddenly made sense.
Very hard to find out in any coordinated way what is available, and I don't mean financially, but just as importantly activities he could access etc. Unfortunately we are in a black hole, with several great support centres/charities but all a long drive away.
Luckily he is now in the most amazing special school but it will take a long time to make up for so much that happened to him.
I started to fill in the form - 5 mins more like an hour, but I wrote a lot! Then realised I could not send it as I haven't read the Green Paper properly. So saved my rants and will go back to it when I have informed myself properly!

zzzzz, yup

great that there is a new charity to speak out for our children with autism - perhaps it will have more teeth than the NAS, which seems so keen not to rock the boat that it never takes a position on ANYTHING!

It's a rebranding of Treehouse, so already very established.

I have 4 boys: ds1 has Asperger's, ds2 has dyspraxia (undiagnosed but accepted dx- cannot access OT for formal dx), ds3 has autism, ds4 has just been referred to CDC for assessment; I know he meets 2/3 triad areas as per DSM straight off, plus echolalia etc.

We get very little; SW wants to help but can't find anything we can access due to sheer bulk of SN children! We get DLA but not the HR mobility so we do not have a blue badge, SW said to apply to council as theyl;ve just changed lcoal rules and he will support us. I only found out about a school aplcement for ds1 at comp age (he is year 6) by talking to people on my MA in ASD course. Everything else I got on here.

Even the Psych support was useless- used to ask me for info as she ahd no ASD experience! (for ds1's eating disorder).

Boys both have statement,s autism outreach useful for ds3 but ds1's school forgot to apply with sufficient notice (about 8 months) for the new year so were refused for more-challenging ds1.

About to do EarlyBird Plus for ds3, starts May.

Mainly for DH's sake.