Autism legislation

Taf · 29-10-2016, 17:05

Quote:

"In the beginning it was really hard, you literally get a diagnosis and you get handed a book - "This is autism" - and sent on your way with nothing. You're on your own.

It's really isolating and it was actually quite depressing. You see all the differences in your child and then you see other people's children and you think 'my children should be doing that' and 'my kid's not'.

We didn't get a book, or even a pamphlet. No help or advice either. We, and many other parents of autistic family members, have searched high and low for any help or advice. So what use would any legislation be?

Or would it simply allow councils to issue letters of "unfulfilled need" that seems to cover their backs completely as in our daughter's case?

http://www.bbc.co.uk/news/uk-wales-37804844

Kursk · 29-10-2016, 17:59

Quote:

Originally Posted by Taf

We didn't get a book, or even a pamphlet. No help or advice either. We, and many other parents of autistic family members, have searched high and low for any help or advice. So what use would any legislation be?

Or would it simply allow councils to issue letters of "unfulfilled need" that seems to cover their backs completely as in our daughter's case?

http://www.bbc.co.uk/news/uk-wales-37804844

With your experience, would you be able to write a book or pamphlet that might help others Taf?

Taf · 29-10-2016, 18:38

Autism is a spectrum, so what is good for one is no good for another IMHO. In fact it can be detrimental in some cases.

We used to have a Parents' Federation where we could meet and discuss individual needs with some professional input. But that went down the plughole when grants and support were removed. Attempts to bring it back to life on a voluntary basis were thwarted at every single turn.

During their schooldays, "integration" was the buzzword i.e. stick them all together and hope they come out alive. Alive but barely educated or helped in meaningful ways. But that seems to be the way for many pupils these days.

Outside of school-hours there was no support, respite or advice available. And once they are considered adult, they usually don't get to see any specialists at all.

pip08456 · 29-10-2016, 19:37

I've thought long and hard how to answer in this thread Taf. I and my whole family have at one time worked for the NHS dealing with Mental Health issues, myself for the shortest time possibly because at 15 I was too young and immature to cope.

My younger sister is the only one who still has a career and is very well qualified on mental health issues.

I was going to give you a history of attitudes from when I worked in a "Mental Hospital" (please don't be offended by the termination of it at the time).

I'm wondering if you think you wish me to have a word with her for you to be able to get in contact? I don't know if she'll be able to help you but I can ask if you wish.

A little bit of history on her, she trained as a mental health nusre at Calderstones hospital. Whalley, went on to take a degree in mental health, became a lecturer at Lancaster university, became the youngest menber of the RCN Disipliary Committee and is now Consultant Nurse Learning Disability, Preston PCT, and representative from the UK Learning Disability Consultant Nurse Network.

If you wish I'll have a word with a view to you being able to contact her.

Haven't read this but she was one of the editors and contributors.

https://www2.rcn.org.uk/__data/asset..._July_2006.pdf