Is this really going to happen?

[oracle]

deleted

Edited November 3, 2006 by oracle

[mandyque]

I can't see it to be honest, knowledge and education may have increased but you can't get blood out of a stone. Most of the ASD kids I know are going to be very dependent on carers for the rest of their lives and no amount of awareness will change that.

[elaine1]

I think yr fears are correct Carole. i have a friend whose son is 18 he has AS too and he is very bright. he is a puter wiz, but he cannot get a job, he fails at interview every time even when it is explained to the interviwer that he has AS, eye contact etc, he still dosent get it.

 

he is well capable of doing these jobs but is never given a chance.

[Flora]

Carole,

 

I'd be interested to know if that was the case.

 

All the time I'm hearing the same message; whether from the LEA or schools, that ASD kids are being well provided for, are going to continue to be well provided for throughout their life, and that this 'provision' is exactly the same as everyone else gets (ie NT mainstream). The thing is, that's what they're SAYING, but in reality this is not what I actually SEE. I feel that the school my son attends is just trying to squeeze him through his last year of primary knowing that come July he will no longer be their responsibility. I am now cynical enough to believe that if/when he goes to secondary school it will be exactly the same; they'll make sure he just sqeezes through until he leaves and is no longer their problem (I won't let this happen, but it COULD happen); by then he'll be an adult and the only person responsible for him will be himself which means ulitmately me. I think this is the same for all of us with kids with ASD. What do we do about it? We are trying in our different ways to change the system; but while the 'system' and it's representatives are persisting in the belief that the present provision is working then what we do and say is like water off a duck's back. It's easy to remain unflinching when all you have to do is stand there and argue 'black is white', especially when the very people who are able to prove that 'black is black' are too busy trying to care for, and in many cases educate, their kids!!

 

Let me know if there's anything I can do to help find out what the 4% figure actually represents; I doubt a simple phone call to the NAS would give the answer!!

 

Lauren

[ceecee]

Elaine1

 

That is sad and wrong.It shows no understanding of AS.Things like this make me really cross.He is excellent on the computer.Yet he has poor eye contact in an interview.It's ridiculous.His eye contact doesn't interfere with his ability to do the job.Many people with As including me will struggle in an interview but it does not mean they cannot do the job.What happened to equal opportunites???

[lorryw]

Hello Carole,

I really feel that the stuff is going to hit the fan in the next five to ten years. I feel that SS are closing their eyes to the up coming situation. In my area we have absolutely no provision for ASD and autism whatsoever. We currently have a small trickle of children approaching adulthood who will require some kind of day care service.

Currently children leaving school are being directed to a special needs 6th form set within a huge complex. The children are housed in old huts at the back of the College and reports I have had paint a picture of glorified baby sitting. The size and structure of the place are daunting for an NT child never mind one coping with ASD.

The problem is that parents are taking this option for their children because after that nothing. The option of direct payment is available to find a carer yourself which is what we have been offered for our son. They are viewing this in a very short term way. He needs structure and daily activities, it isnt rocket science but it costs money and that sadly is the main issue.

Lorainexx

[LizK]

No, I don't think it is that simple, there must be a range with some kids with AS living independent lives but others struggling and needing support. I can only speak from my own personal experience but I do think it's possible. My H has AS traits, has a university degree and is in a successful job, his cousin who has AS works very successfully in IT. H and I both see people in our professions who likely have undiagnosed AS. I know a lady with three sons with AS and two of the three have found that their difficulties have improved as they moved through secondary school and matured and she has high hopes they will lead independent lives. Her third child though is likely to need long term support

 

The figure of 4% seems overly bleak but I wonder what is actually represents? Is is lower functioning autism or everyone on the spectrum? I think there are a lot of adults out there with undiagnosed AS who have 'coped' with university and are in full time emplyment. I say 'coped' as I also think a proportion of these suffer from low grade depression or anxiety because their AS has never been diagnosed or recognised and conforming to societies norms causing unhappiness and anxiety. I have a friend who works in adult psychiatry who says that this is just starting to becoem recognised in his speciality, that up until now it was almost as if ASD only affected children and therefore not an issue for adult psychiatrists but there is a gradual awareness amongst a few that it affects people for their whole lives and that is may be an underlying problem in some people presenting with mental health problems

 

Anyway rambling there............. The attitudes you came across do seem hideously naive. Whilst some adults with AS or ASD may function fine in later life there is bound to be a significant proportion that don't. As I said above it's this misunderstanding that somehow ASD 'disappears' once you reach 18

 

Lx

[call me jaded]

I am so annoyed that there isn't national data. MY LA are so panicking about the 'influx' at primary level that they haven't looked further.

 

My own personal intention is that my son should live independently and we have already started to plan how that will happen. Needless to say SS will have no hand in it.

[mossgrove]

I have a problem with the NAS survey.

 

It was based on interviews with members of the National Autistic Society who had adult children with a diagnosis of Autism, rather than a survey of people with Autism.

 

In research terms this survey is not representative of all people with Autism. Adults with Autism who have a diagnosis, have parents that have joined the NAS and are active within it, and have responded to a survey are more likely to be people who have experienced significant amounts of dificulty in their adult lives.

 

Where someone Aspergers/Autism is able to hold down a job etc. they are more likely to be self-contained within their own lives and not have parents active within the NAS and filling in questionnaires on their behalf.

 

The second issue is diagnosis. Over the last few years I have come across a number of people who I am pretty certain have AS (Some of them are on this forum) and tha majority of them work. They may have been unable to realise ther full potential,they may beneft from a greater level of support, but I would say more than half do work. There was no such thing as a diagnosis of Autism for people who are now in the workforce unless that had what is variously described now as 'classic', 'Kanner' or 'low-functioning' autism. Aspergers was not recognised at all until years after I and people my age left school. Because they do not have a diagnosis they are excluded from the figures.

 

Some of these are people I have only come into contact with because they work, so I am sure there is a hidden problem, and I wouldn't even go as far as to say that half of people with Autism/AS are inemployment but I am convinced that the 4% figure is much too low.

 

Where this becomes a problem is that the raw statistic had become detached from the limitations of the survey that spawned it, and is now being repeated everywhere as if it gives the whole picture. The fact that it is evidently inaccurate when observed by many decision-makers means it is dismissed and everyone assumes that it only refers to 'severely affected' adults and children with (in particular)Aspergers will be fine when they grow up, which in turn leads to (in many areas) no services at all being available to help people with Autism into the world of work.

 

I agree that it is naive in the extreme to assume that children who need a high level of support throughout their school careers will somehow come out of education as fully-rounded individuals who can take their place ithe world of work without support, but I do think we are doing a children a disservice if we base our decsions on the fact that only 4% of them will be able to work.A far greater proportion of our children than 4% will want to work when they grow up (probebly a majority), and I think it is right that systems be put in place that reflect that.

 

Whatever the shortcomings in the education system, there is no denying that there is a lot of provision out there, not always appropriate or available to all, but it is there, certainly when you compare it to the level of provision for young adults with AS. This has been likened to 'falling off a cliff' and I an see why.

 

The challenge for the years ahead is for society to recognise that adults with ASD's have an enourmous amount to contribute, and to put systems and support in place to allow that to happen. Lack of resources is often used as a justification for not supplying these services, but the cost of NOT providing these services is enormous, as people who could work but do not get the chance to will remain on benefits for the rest of their lives instead of paying taxes and contributing to the wider economy.

 

In research terms there needs to be a much more detailed look at what is happening on the ground, what is in place in various areas, follow-up of Autistic children no longer in education, identifying stragies that work and those that done't etc. and the resources need to be put in place to deliver on what is required.

 

Until then many children who want to enter the world of wrk will continue to 'fall through the cracks'.

 

 

Simon