Do all the autism "support" interventions for kids actually work?

Some progress could be made with the way children are supported. Research seems to hinge more on cure than lifestyle support. The support tends to fall back on various treatments, depending on the reviews and cost, which supposedly achieve, if not a cure, some magic solution to survival in adulthood.

There is an added danger with parents groups that they address autism/aspergers "by proxy". It tends to be about the parents, and while it is true that parents and siblings are affected, often very seriously affected by having a child on the spectrum, its the child that needs help. With the best will in the world, parents put everything into making it possible for their AS kids to grow up safely, but that does entail looking on it as a cure rather than a preparation for life.

Therefore it is understandable that parents believe that somehow the process will create a happy, settled and independent adult.

Trouble is the evidence isn't there yet. The Government initiative (that's now gone floppy) "Leading Rewarding and Fulfilling Lives" was partly aimed at determining the numbers of adults affected and the way they are affected. Its not going to happen if health authorities cannot distinguish adult autism from learning disability.

We know very little, in real terms, about the consequences of autistic spectrum on adults. As I've already said above, we still don't have a handle on the numbers who go on to develop other psychological problems (who are treated for those problems ratgher than A S), or the numbers with depression, suicides, alcoholics, people in and out of prison. Its a huge problem.

Parents groups encounter a few able asperger adults and whinge about them threatening resources for supporting children. They should be relieved if they are seeing adults who are able, even if they think that's a misleading impression. The alcoholics, the drop outs, the offenders, the mental illness cases, they were people's children once, and even if aspergers or autism wasn't diagnosed then, the parents I'm sure hoped for better outcomes.

I know I'll be unpopular for saying this, but many parents groups are being quite selfish. It tends to be about them not the kids on the spectrum.

I've said on another thread about social stories that we need to look at ways to make things easier for youing people to manage, than trying to force a magic cure.

I've suggested things like encouraging them to use nods in place of eyte reactions, or to punctuate their speech with "emoticon" phrases that enable them to better convey the emotion behind their speech their eyes and faces cannot convey. Help young people become better adults by giving them the means to compete with their peers on something approaching a level playing field.

But crutches for health workers, like Social Stories, don't work because they show people to have a weakness they cannot resolve, its like blame culture. Cannot anyone wake up to the fact that reminding AS kids of what they cannot do and suggesting fighting to achieve the impossible is a cure is not a kindness! 

If only it was as simple as just "those of us receiving adult diagnosies since we're often considered as not being on the scale at all, or even if we are, the fact that we've managed so far in life means we should go on as we are and not divert services from young people"

Consider all those who go on to depression, or psychiatric complications, or suicide.

Alcoholics - a great many alcoholics on analysis have proved to have Aspergers.

In trouble with the law.

Down and out, homeless, in hostels

What's the point in spending all resources on children if you then disregard the welfare of so many adults (including those diagnosed as children now adults)?

It is not something you grow out of. The ability to manage may improve with age for some .....many others pay a high cost.

We seem to be stuck in a rut because the support processes haven't grasped that autism isn't something you grow out of!

The point of the recent Government initiative on living better lives was to get local authorities to provide for adults on the spectrum, but it clearly isn't happening. There's just a gulf between the two "generations". Everything stops at transition.

Part of the problem is that Parents Groups, which run most of everything for autism, are about parents rather than the kids with autism. And once we get past transition, there aren't any pressure groups. NAS has tried to create local social meetings and on-line local groups has had mixed success if at all (NAS please comment if I've unfairly generalised).

All the momentum has gone into parents' groups. Many of these don't provide membership for the kids, and when they reach transition they continue only to be represented by their parents, and as there is little provision for after transition in these groups, many of these parents drop out. I have belonged to parents groups where I have to pay as a professional (which is true) but no account taken of the fact I have Aspergers. And you see young men and women still going to parents groups as kind of specimens with their parents.

Hence there is also a notion that the help given to kids provides a solution, even though the help currently dilutes considerably, even disappears, after transition age.

One of the arguments for the support infrastructure for children is it protects them from the harm done by bullying. But the bullying still goes on. It is difficult to comprehend whether enough thought has gone into whether support is beneficial.

Most of the scientists are looking for a cure. No-one seems that concerned about making lifestyles easier.

And I do so agree with DaisyGirl about after University. I was a disability coordinator ion the academic side in a university for ten years, supporting colleagues as well as directly supporting people on the spectrum with their studies. I saw people flourish and vastly improve in the course of three years at university.

Then they graduate....support vanishes, and all the benefits of university are lost.

I think it is cynical and criminal to delude oneself into thinking that support only up to transition is of any benefit for life.

I was just wondering about this because ALL of the resources for autism seem to be directed toward support strategies for children, yet it is far easier to cope with Asperger's when a child and at University than it is after University (in general). (I am not saying it is easy, I had a terrible time as a child, with no support at all, but this experience is so insignificant compared to how absolutely awful it is as an adult after University, and there is absolutely NO HELP.)

As Asperger's cannot be cured I wondered if the resources would be better spent in helping adults with specialised really focused advice/support etc. rather than on "social skills" etc. support strategies for children.

quote"Has anyone out there had all this SUPPORT as a kid and is now able to function in the adult (post University) world without having crippling anxiety/loneliness/depression/OCD/eating disorders etc. ?"

yes and no, it depends on the aspects of life. I don't think it is an all or nothing question, I found I coped well in higher education and in business under a function role were I knew the perimeters. Stepping outside this comfort area, due to circumstances of life brought by an overwhelming situation, made my condition regress into more the rigid traits of aspergers, which were getting released previously. So my conclusion, is it depends on the aspects of the environment platform, benefical or unbenefical.

Hi, I was diagnosed with Aspergers when I was 17 (got referred to CAHMs for it aged 16 though). I had about four or five months of 'support' before I was cut from the programme as I'd hit 18.

All the sessions did was reassure me that my way of thinking was 'acceptable' to someone with my condition, but didn't do much asides from suggest a bunch of things that may help (i.e. a hammock, playing music at night to drown out sounds, secure routines etc) and a diagnosis to give to Uni.

Unfortunately, it still means I struggle with servere anxiety and OCD at verying times, more often than not, once a day at least. All the other skills (learning to face read, mimicking 'normal' behaviour) were learned through enduring the hell that is UK education. Uni's been a lot more enjoyable so far, but only because I'm allowed to manage my own  time more.