Two Children Diagnosed With Autism A Week In My Borough

[JakB]

At my LEA meeting today I was having a broader chat with a senior SEN officer who told me that two children a week are currently being diagnosed as being on the autistic spectrum in my borough. Obviously, there is a distinct lack of provision for these children and I was talking to her about working with her to try an raise awareness of the situation higher up in government. Shocking, isn't it? (or am I just naive?)

[Jimjams]

just idealistic (but I'd be happy to join in trying to make the govt understand the issue- clearly they don't)

[JakB]

Well, parent power, and all that Jimjams?!!!! (my parent power is currently disappearing down a bottle of red wine). Seriously, though, LEAs are struggling to cope with the influx of children coming through. Does no harm to shout about it in a rational way, that is. BTW, PACE have a new handbook coming out about parents with children on the autistic spectrum and campaigning. I've got a proof copy and it's very good.

[beccaboo]

I was told by a professional recently that a few years ago there were 250 children in this borough with a dx. Now there are 750. I guess that's a good couple of primary school's worth? I don't know how much the provision has changed to accommodate this, but I reckon not that much....

JakB, what would you ask for if the govt were willing to provide exactly what parents wanted (dream on.. ) What would most parents want? I'm guessing ABA nurseries maybe, more special schools, more training for mainstream staff?

I know I'm sounding like a scratched record, but I still can't believe the way that you're given the dx and then booted out on the street. Everything you read says that early intervention is key, but it seems to me that there is virtually no intervention available unless you have a lot of money and are prepared to do an awful lot of research yourself.

[Jimjams]

There's also AIM (autism in mind) - campaigning for the same sort of stuff (actually specifically for more specialist provision for high functioning children and better and increased adult services). There is the autism maifesto due to be in place in 2013 or something hideous- but at current rates of change its pie in the sky.

[beccaboo]

Wow Socci that's surprising. There are loads of children of that age with a dx here. I went to an Early Bird introductory meeting this morning and it's over subsribed, they're going to run an extra course. There was one woman with a 2.6 year old with a dx.

[coppertop]

AIM has its own e-mail forum/list if you're interested in joining forces with them? They do a lot of behind-the-scenes stuff.

[JakB]

Yeah, what I've certainly realised during this particular battle to do with DD is that there just isn't enough expertise out there. There aren't enough teachers who specialist in autism available to teach at Special Schools. There isn't enough training full stop and there isn't enough funding to provide more specialist places. Beccaboo, I think that when you first get that diagnosis and your child is tiny (DD was diagnosed at 2 and 3 months) you want immediate intervention, don't you? You want to do all you can, not to 'cure' your child's autism (don't believe in this at all as a premise) but to maximise potential from an early age. Wouldn't it be fantastic to get a diagnosis and then have signposts to a specialist nursery plus home-teaching from trained therapists with funding available? (idealistic, I know). Instead, you have to go out there and find out what's available, self-fund a programme if you decide to start one etc etc... And not all parents are in a position to do that. DD's godfather gave us a cheque to help us start DD's programme. Whatever people throw at you (in the past few months I've heard statements like, 'There's alot of expertise in the school, blah teacher has had autistic children in her class'. Well, yes, but I have witnessed blah teacher with that severely autistic child held in his chair with no meaningful participation in the class at all ('We can't get through to him,' she told me). That's teaching autistic children effectively, is it? I believe you need very specific teaching for a child with autism that takes very specific training. It's not rocket science but it does take a particular approach and there just isn't enough experience out there

[Jimjams]

Precisely jakb. DS1's NHS SALT told me she couldn't do anything with him because "he's not interested in anything". Shortly afterwards we brought on board his private SALT with several years hands on experience in an ASD specific school- and she found there was plenty that interested him (eg changed feed the monster (he doesn't even know what a monster is) to put in the washing machine- and hey presto we could practice 2 key word receptive language). Her view was that for an autistic child he was relatively easy to work with. So currently a lot of people who you are passed to do not have enough hands on experience to be any use. Before I get accues of beng angry and having issues with professionals can I point out that my post is critisising the system as it is, rather than any individuals.

[JakB]

Absolutely. There are brilliant professionals (DD's speech therapists- she's had two now- are like Gods) and professionals who need to go on a two week residential holiday with 20 severely autistic children . Only then would they have any idea...

[Jimjams]

ah yes I've heard of that technique (wasn't it a special school doing that- they have changed a lot!). Ds1's mainstream school tried a variant- they had a "rule" apparently. You asked an ASD child once and if they didn't do it then you forced them (never mind length of time to process etc). In ds1's case they tried this with bead threading- tried to physically force him to do it- he headbutted his LSA. Even the HT said she wasn't surprised if he was being held down.

[beccaboo]

JakB, it WOULD be fantastic - and the fact that it wasn't there only added to our bewilderment. You can be left feeling that your child's fate is entirely within your hands, and that a lack of progress is somehow your own 'fault'. That's how we felt anyway.

There's nowt wrong with idealism imho - it's what gets things done. Ds gets help from the LEA at his ms nursery - a trained practitioner goes in once a week to work with him. I discovered this week that this is the only London borough that offers such a service. Apparently this is all due to one woman, who runs the service - she campaigned to the LEA/council and eventually was given the funding to set it up.

[beccaboo]

Socci, have you felt that people want you to just deal with it/accept it? I sometimes think there's an undercurrent of that - it was particularly obvious with a gastro paed we saw. He made me feel we were in denial because we were pushing to sort out ds' problems - not in a horrible way, he was nice, but it was like he was sighing under his breath iykwim.