What happenend Next

[Tilly]

Documentary about two families whom have a severely autistic child. First aired in the '60's.

Not very comfortable viewing - but it's on now or can be found on demand.

Tilly

 

Ooops sorry about the double post - but it is late and the vodka is beginning to work

Edited May 28, 2008 by Tilly

[Tilly]

Just Bumping this.

If you have Virgin media it can be found on Catch up TV On Demand

Tilly

 

Sorry can't do links but you could try this

 

http://www.bbc.co.uk/iplayer/page/item/b00...ml?src=ip potpw

Edited June 1, 2008 by Tilly

[mossgrove]

iPlayer Link

 

Downloading now!

 

Simon

[Kinda]

I saw the programme and found it quite disturbing, which I think was related to the treatment from the American specialist. She seemed to think that autistic behaviour was due to being naughty and therfore the child should be reprimanded.

 

I felt sorry for the child's mother they showed being treated by this specialist as she defended her on the grounds that she got results in that her child ended up being able to talk, but I remain unconvinced.

 

I think the programme was also disturbing that it highlighted how little we knew then and really how little we have learnt now. Please correct me if you think I have it wrong since I would love to think we have made quantum leaps forward?

Edited June 2, 2008 by Kinda

[lorryw]

I didnt see the programme but have seen plenty over the years. I totally agree with Kinda, not much has changed and in many ways things are far worse. Autism has become a mini industry and there are even more dubious people around who want to take advantage of families.

When my son was first diagnosed in the 80s we were desperate for help and knowledge and could only find a few ancient books in the library.I clearly remember his doctor telling us she had only come across 2 other people with autism in the previous 10 years and they had both been placed in long term mental hospitals at the age of 6. I think this thought was always in the back of my mind and was determined that it would never happen No one seemed to know how to help him (or us) and we stumbled through, toilet training, coming to terms with him not speaking or sleeping and made it up as we went along. A friend was only saying the other day that in a strange way it was probably easier for us. Every child/adult with autism is so different (a quick scan of this forum proves that) and that alone discredits many of the self help books available.

I think forums like this are a godsend and finding people locally in a similar postion is 100 times better than any book. My best friend is a Mum in a similar position to us and we have propped each other up over the years

Im waffling now but basically nothing has really changed

[ScienceGeek]

Jeez. This is scary. She talks too loud and sounds scary.

Edited June 2, 2008 by ScienceGeek

[Kinda]

Yep certainly was scary and took the money in the end and went into adult therapy.

 

lorryw - I recognise exactly where you are coming from, I recently put my son's teacher in his special unit into google and it came up that the teacher is head of autism for the county.

 

Nobody had told us all those years ago that our son was considered autistic and we only stumbled on it by way of a friend. His statement of educational needs etc only mentioned dysphasia.

 

For me its very upsetting to think that we may have missed out on help had we known the actual conditon but having said that the state help has managed to get him a masters degree and a good job. The problem now is more one of managing relationships and emotions rather than academia.

 

Again the issue it raised was how helpless the parents were having to rely on so called experts, I just hope when I look back in 20 years time I don't regret too much of what we did.

 

Worrying?

 

Kinda

Edited June 2, 2008 by Kinda

[mossgrove]

I didnt see the programme but have seen plenty over the years. I totally agree with Kinda, not much has changed and in many ways things are far worse. Autism has become a mini industry and there are even more dubious people around who want to take advantage of families.

When my son was first diagnosed in the 80s we were desperate for help and knowledge and could only find a few ancient books in the library.I clearly remember his doctor telling us she had only come across 2 other people with autism in the previous 10 years and they had both been placed in long term mental hospitals at the age of 6. I think this thought was always in the back of my mind and was determined that it would never happen No one seemed to know how to help him (or us) and we stumbled through, toilet training, coming to terms with him not speaking or sleeping and made it up as we went along. A friend was only saying the other day that in a strange way it was probably easier for us. Every child/adult with autism is so different (a quick scan of this forum proves that) and that alone discredits many of the self help books available.

I think forums like this are a godsend and finding people locally in a similar postion is 100 times better than any book. My best friend is a Mum in a similar position to us and we have propped each other up over the years

Im waffling now but basically nothing has really changed

 

I think things have changed a lot in the last decade or so. The problem is that the need for services outstrips the supply several times over.

 

Autism is now something that many people in the wider community are aware of, particularly around Aspergers/HFA which was almost unknown then (Hence only two cases of Autism having been dealt with by your doctor, he almost certainly has several cases in his practice now).

 

Many children at the so-called higher functioning end of the spectrum went through the whole of the school system with no support at all and institutionalisation of people with more severe difficulties was routine.

 

That is not to say that everything is well. it plainly isn't as a quick scan of this forum will reveal. The abscence of suport after education has finished is a national scandal. But I do think there is a slowly-improving understanding of what needs to be done.

 

 

Simon

[Kinda]

Hi Mossgrove

 

Interesting post but how has the treatment moved forward. I agree with you that the identification is better but the treatment, remain unconvinced especially when there is another post regarding so called "cures" and parents spending a lot of money in the pursuit of a "cure".

 

Kinda

[Tilly]

I think the programme was also disturbing that it highlighted how little we knew then and really how little we have learnt now. Please correct me if you think I have it wrong since I would love to think we have made quantum leaps forward?

 

I agree with most of what you say Kinda, one of the sad things for me was when the girls mother (Vera) talked about how she fantasised suicide and also taking dd (Iris) with her - I know many people have had these thoughts and unfortunately there have been parents who have taken such tragic measures. Heartbreaking to think that 40 years on people still feel as desperate.

I think it was very brave of Vera to share her honest thoughts i.e. she wanted to give her other children a more normal life and that is why she placed Iris in residence. Although I respect Vera's thoughts I don't necessarily agree with her actions but at the the time there may have been no respite etc. Lets hope it makes agencies aware that people do struggle big time and respite is needed and can be a godsend to a lot of families.

 

Tilly

[lorryw]

We are currently in a horrible situation. My son left school 4 years ago and we still havent any day service for him. The NAS has turned its back on us and we are now left to get on with it. Our social worker is keen for us to have Direct payments, but who on earth do we get to work with him. He can be unpredictable and self harm which leads (due to mismanagement of behaviours by so called experts) to aggressive behaviour

We feel trapped but know that it would destroy our son and us to place him in residential care. All we want is for him to be safely and happily occupied from 9 to 3, Monday to Friday but it seems that is just never going to happen

[mossgrove]

Hi Mossgrove

 

Interesting post but how has the treatment moved forward. I agree with you that the identification is better but the treatment, remain unconvinced especially when there is another post regarding so called "cures" and parents spending a lot of money in the pursuit of a "cure".

 

Kinda

 

It depends on what you mean by treatment. As Autism is not an ilness that has a cure you need to be clear about what you expect from a 'treatment'

 

To give some practical examples there is much more support available in education. Not enough perhaps but better than none. For some children who have co-morbid ADHD there are a range of drug tratments available. Services exist like Autism outreach and Portage, more undertanding of the nature of Autism has made it easier for parents to claim DLA, and the flow of information has improved markedly at least partly thanks to forums like this.

 

Not eveything in the garden is green by any stretch. Autism is still not curable but there is an increasing understranduing abiout why we shouldn't be thinking of it in terms of cures.

 

Simon

[Tilly]

We are currently in a horrible situation. My son left school 4 years ago and we still havent any day service for him. The NAS has turned its back on us and we are now left to get on with it. Our social worker is keen for us to have Direct payments, but who on earth do we get to work with him. He can be unpredictable and self harm which leads (due to mismanagement of behaviours by so called experts) to aggressive behaviour

We feel trapped but know that it would destroy our son and us to place him in residential care. All we want is for him to be safely and happily occupied from 9 to 3, Monday to Friday but it seems that is just never going to happen

 

The brother of Philip in the documentary stressed on the very thing you are talking about. He said that there are agencies for school age children and then the help dramatically drops. He wants to see continuous support/care for people from "the crib to the grave".

 

Tilly

[Kinda]

Hi Simon

 

I agree that there won't be a "cure" just better understanding and some specific help to overcome the difficulties associated with AS. Thanks for the reply and of course you are correct in what you say but I think for me specific help from the state and help we paid for helped teach my son how to talk.

 

I think though had there been more help that he would have progressed better and all we can hope for is more help for the children and students. I still think that the education system does not understand AS and today with all the information available this is unforgivable, its almost like they "play" at it to appease their legal obligation under the law rather than a concerted effort to provide specific help.