Spare a moment for Autism please

[Lotster]

I posted here a little while ago about the Autism Bill, lots of you emailed your MP's for the "I Exist" campaign to demand better services for adults with autism... the Autism Bill now has the public backing of both the Conservative and Liberal Democrat parties.

The support of the Conservative and Liberal Democrat parties is a fantastic boost for the Autism Bill, with both parties committed to supporting the parliamentary vote if any of their MPs chooses to take it forward. This fantastic news makes it all the more important that you contact your MP and ask that they enter the Private Members' Bill ballot.
Please email your MP today as the ballot opens tomorrow.

If you want to have a look at how your local authority is ranked, have a look at the Authority Progress Tables
Mine isn't doing so well.

You can also listen to an I Exist podcast on the NAS website.

Oh, and give as a bump.

Not really surprised to see Essex in red either.

They are just a shite county council.

Redbridge too, pile if shite.
Apparently autism isnot real according to most involved in care in my area.

And my GP today told me that my boys will grow out of autism, and will be, in his words, 'normal by the time they are adults'.
To which I told him that most adults I know are not normal as I understand the definition of the word normal to be to me.
That silenced him, now he thinks I am a nutter. I told him that I wanted my children to be able to jump queues in his waiting room, and he should allow all people with autism to do this. I did not get apositive to that. Apparently all people are impatient these days
It has been such an exhausting day.
Got a meeting with my 5 year old ds's (asd) form teacher tomorrow. She does not think that my ds needs a timetable in the classroom. I feel so tired all the time now. I can not remember the last time I could actually sit down and not have to think about the effect autism has on my childrens lives. I have this until they are adults, and beyond by the looks of it.

Deeeja - I wonder how you GP can possibly know this...

WatchtheWorld that's appalling poor lad.

bump

Sumbit?

From NAS:

Today we have made legal history! The Autism Bill has made it through its last parliamentary stage, and will now become the Autism Act 2009: the first-ever disability-specific law for England.

The Act will guarantee a future Adult Autism Strategy that will introduce a range of legal duties to improve local services. We will of course continue to campaign until the strategy makes a real difference to people affected by autism.

You, our members and campaigners, and the wider coalition of autism organisations across the UK, have all been vital to achieving this landmark victory. Thank you!

www.autism.org.uk/autismact2009

Dorset is Red

Mmm, an adult strategy. Reminds me of the LA duties regarding equality etc.... A good idea in principle but will it change anything really? I've no doubt that it might help a few people but when there is no consistency of assessment, or diagnostic services, poor provision in terms of support or strategy and low levels of awareness amongst GPs and teachers, it might well be too late for most children by the time they're adults.

It's good for NAS publicity but I genuinely can't see what real difference it will make. Like LA equality obligations, I'm sure it will all look good on paper. I feel that tackling the issues much earlier (at pre-school and primary school) is the only way to give children an equal chance to progress with their peers. But I'm sure that would be a much tough option to get through in a bill

No stats for our area, but given that I know they only deliver services to adults or children with LD (as defined by IQ under 60 IIRC) then that is fairly damning in itself. Our MP always says he will vote as asked by me if he can attend, and when I pull up if he did- he never has.

Deeeeja- the chap who ran (now retired) my MA gave a talk to GP's on autism; he asked who knew what it was, few raised their hands but he picked one that did. @Is it soemthing to do with the ears as it begins with Aut'.

FFS

Debs there should be consistency of DX in 2011 following the NICE report, though I suspect actualaction will take years: it is in process though.

I've given up on LEA intervention here (and SSD at any level)- will be pulling ds1 from school at 11 until he is offered a place at the AS unit. His TA seems to think that will be easy enough to obtain, I seriously doubt it but we can no longer cope with his behaviour from being in MS so it is that or put him in residential which will be so wrong for a child as HF as him.

Peachy - yes perhaps there will be theoretical consistency in dx but NICE guidelines are not always followed and are not obligatory - merely good practice.

Further, it is the process rather than the decision which causes most problems. The unavailability of OT, SALT and properly trained professionals is unlikely to change. Neither is the lack of crossover communication between schools and health professionals.

Sorry don't mean to have a go just feeling angry at the moment

Hopefully something positive will come out of it.

Now we need a bill to improve chances for disabled children who are not ASD but who have just as many and complex needs.

We do indeed DD, though I think asking teh NAS to organise that would be bizarre- cerebra perhaps?

Debs you are right of course but at least if forexample sensory stuff is included (from what I can gather apossibility) then we arestarting to outlinewhere a child with asd might bebefit

I wasn't asking NAS to organise it. I can't imagine who will though

I know DD< but the link is to an ANS initiative.

I was wondering who would prganise it if it were to encompass all SN kids- physically as well as LD (I wonder many things whilst waiting for school taxi LOL0 and the truth is, there aren't many peoplewith an evverall interest is there?

BIBIC did some work on SN and crime a few eyars back so that covered SN generally but that's not their main role, cerebra / mencap don't covere PD without LD.....

???

Maybe that's what we need, a Union for famillies of chidlren with any form of SN. Anyone in LOL?

Count me in !!!!! I think families often encounter the same problems with access to services, inconsistent provision and problems with education.... let's roll

I think that it will make a difference. It may take a while to feed through but at the moment we are in a situation where, in many areas, adults with ASD get completely ignored and officially "do not exist". So this means that some LAs can get away with constantly stalling, reassessing, delaying provision for children knowing that once the child hits 18 then the "problem" will go away. Now it looks like they will not be able to get away with this. They wil have to provide services to diagnose adults and they will not want adults who have been pushed around the system since birth suddenly getting diagnosed and saying (possibly in court) "see I (or my parents) told you so". So hopefully they will take childrens SNs more seriously now.