Autism and the Government

exactly stranger it winds me up so much that the same facilitys arent there for us when they should be i mean yes people should have the same facilites opn the NHS for them at the end of the day we are talking about children here

They'd just go private if it was a child of theirs.

well thats it we had to wait 10 weeks for an appointment to come through to see the consultant and then still had to wait for the appt date its riduculous we,ve only just got her appt for the speech therapist and thats still not till the end of this month and this we were told was because there isnt enough doctors for the amount of kids with autism have you heard anything like it ? its disgusting and this is down to the government again making cuts all the time with the NHS but it would be so different if it was one of their children though xx

longman said:

It is different for children of school age. The parents have responsibility and schools have powers. 

But there's only so much a parent can do if the GP is refusing to listen. In my brother's case, my parents were told that my brother is just a spoilt brat. Yet, my parents never treated my sister or I any differently and we turned out fine. All the school did was exclude him. He was then sent to a school for children with behaviour problems and was then diagnosed at the age of 11 with AS.

This was the mid 1990s. I would now the system has changed.

just a worry i wonder what will coem out of the loical elections i dont know who will have power where i live but i hope it pans out well

The Major

well said scorpion and wolfbear its right it is a joke the way you have been treated its disgusting sometimes i worry that my little girl will get the right support for her but i know we will fight tooth and nail to make sure she does but going on your story wolfbear you can tell how much you have fought its so wrong like scorpion said we need to get more militant and make these people learn and most of all listen xxxx

Here, here!

Someone give that man a job!

Or better yet, give him a baseball bat!

(That's a JOKE by the way!)

But, on a more serious note, I have been thinking it's about time we as a community got militant, stood up, insisted we be counted, and our value to society, as a whole, be recognised!

well said kalojaro thats exactly my point people need to be taught about autism and not when its to late i agree that maybe booklets should be given out in schools for people and lets face it if people new about this then you would have been able to be diagnosed in primary what is they say "early detection is best " and it is xxxx

I had many classic symptoms of autism as a child. I was quiet, lived in my own world, couldn't interact with other children, was scolded for being too 'mature', I used to bite others at the playgroup and I would 'act out' at any change. i.e. when I went from nursery to reception, I screamed, kicked, bit, threw up and was generally traumatised, the school was forced to intergrate me into a full school day slowly over a month or so, they had to intergrate me into a school routine again in year 5 after the Juniors school was turned into a primary. Each time I was dealt with by the deputy head who was in charge of SEN.

If I had been diagnosed in primary, I wouldn't have had to suffer the depression, anxiety and the fear of suicidal thoughts throughout high school, all of which my high school passed off as a side effect of my parents divorce the year before I enrolled because my primary hadn't informed them of my 'issues'. By this stage I'd learned to hide my emotions, thoughts and feelings so well even my own parents didn't know how stressed and depressed I'd become. It took a breakdown over Maths AS homework (trying to complete a months worth of revision that night because I felt it had to be done) in year 11 for me to finally get reffered to CAHMs, who then diagnosed me with Aspergers Syndrome.

There is no awarness of the varieties of autism. I didn't know my high school even had an Autistic Unit until after the diagnosis. All the 'normal' kids are kept seperate from the autistic kids and none have any idea of what autism is beyond 'spazz'.

I will honestly say that I'd rather have been diagnosed in primary than growing up thinking I was wrong and that it was solely my fault. If people were made aware of autism through other ways, like leaflets being given out at assemblys in schools for parents to read, rather than documentaries on TV which mostly presents the most extreme behaviours, then maybe more kids can get the help and support they need.

It is different for children of school age. The parents have responsibility and schools have powers. But at the same time there is an infrastructure to ensure things are done properly and the right support is given. Often the child may not be informed until older as to the outcome of diagnosis - and we see this debate in discussions here. It is an arrangement between the parents and the education service.

If it is spotted at school age there is a system, albeit with a lot of imperfections not to mention postcode variations. And even then many go undiagnosed.

The problem for adults is that such decisions do not normally involve the parents. The educational body, especially HE is accountable to the adult individual, not the parents. At the same time there is none of the support infrastructure available to school age students.

Something obviously needs to be done to make it easier to advise adults in further and higher education of the possibility of AS, but at the moment there is no mechanism in place to facilitate this.

i hear what your saying longman but i think we should be made aware of it and people should be taught about autism and how to spot it knowing what i know now the signs and traits are very important and should be taught to be people if it wasnt for my sister and brother in law we would not of known about our little girl especially this early on because we didnt have a clue about the traits of autism until they told us and then all the signs all fell into place which then we asked for an assessment for her and it really upsets me that i didnt know this myself and i think people should be taught this xxx

In respect of what Goatworshipper says about education staff spotting autism there really is a tricky dilemma there. 

There seem to be no barriers to making a student aware they might have dyslexia, though having done so as a tutor in HE that's a painful enough process, and you need to be prepared to commit time to a student to support them through diagnosis. Some students get very affronted at the mere suggestion, even though we only attempt this when there is a clear benefit to the student and we've taken advice beforehand.

The trouble is with autism/aspergers is you can spot it, but we are no allowed to take any action, or at least not without considerable consultation when there is an urgent need, which it rarely comes to.

The problem is that an AS diagnosis can be very traumatic, and there is a real risk of suicide. Although two years retired now, I've kept my hand in and the position hasn't much changed.

A further problem is that some students hide their diagnosis when coming into HE (it is true also I think in FE but harder to conceal because of school references). So staff have a pretty good idea someone is on the spectrum, but aren't allowed to ask. You can understand school leavers wanting to hide it - there is a fear that fellow students will find out and that their studies may be diverted onto yet more social stories (isn't there an age after which that sort of counselling framework ceases to be relevant?!).

I suspect this is why a lot of young people don't get spotted in school, FE College or University is that staff are still struggling to get the right information and the right support. I have been through a diagnosis situation with a student but we weren't allowed to say anything directly, he had to be steered to an appropriate external councillor. It is a really tricky process. And it only happened because we were really struggling to support the student otherwise.

Can't that be said about all other congenital (congenital meaning the disability is either present at birth or soon after) disabilities?

i agree labour did seem to care but then as you say there was not much else done it annoys me so much and then you are being refferred to different places you have to wait weeks to recieve your appt and then when you do get it you have to wait another 6 weeks before the appt itself and while were all waiting for this to happen our children could have had possibly weeks of working with these people it just holds us back even more i get so frustrated i think goat that its disgusting that no one in your schools had picked up on your dyslexia it just shows what i,m on about when i say more people should be aware of all the traits and signs it makes me so mad xxx

I work in Education (FE), and in all fairness the Government/LEA constantly requires our staff to train in disability awareness frequently. AS/Autism is always one of the main disabilitys discussed.

However know one trains our staff to spot it.

Im 29 and looking at getting an assesment soon, I got diagnosed with dyslexia at age 24. If I'm truthfull I feel very annoyed that neither primary, secondary, college or uni picked any of it up. I discovered I was dyslexic through studying music and the brain, and watching embaressing bodies made my alarm bells ring with autism. So I can fully understand your frustration with not enough measures being in place for early detection.

Indeed, the last government brought in the Autism Bill (which is now law, and deals primarily with improving recognition and support of adults with autism), but since then not a lot has happened.

Of course, the government and local authorities blame the current economic climate, but they could all still, at the very least, be seen to be doing a lot more.

i dont know why but it looks like the only govenment that cared was the labour govenment with tony bair as pm now there was an austim freindly and aiware govenment

sorry about spelling i have AS

The Major