post diagnosis support - help!

[eatyourveg]

There is a SALT coming here tomorrow to ask me about post diagnosis support for parents of newly diagnosed ASD children. He wants to set up a website for parents and is wanting to know what sort of content parents would want on it before making a case to put to the LEA to request funding. Any ideas? It would predominantly be a service for parents in West Kent but any suggestions gratefully received.Thanks

For me, the best PD help was speaking to other parents in a group with children the same age as DS2. There were proffesionals shadowing the children while the parents talked to each other, and we also had 30 mins away from the children in a different room where a proffesional spoke to us about any concerns we had. It was all very relaxed.

For me,counselling would have helped if it was offered as soon as ASD was mentioned. We were told in may that she would be diagnosed and are still waiting for any support or respite. By the time the diagnosis is made i will have come to terms with it by myself and gone through the painful part alone with no help . I think support should come sooner than post-diagnosis.

don't forget the needs of parents of kids who don't get a diagnosis of ASD, but still have receptive/expressing language delay/ social communication/behaviour issues.

Agree with Starlight - the years of waiting ( and I mean years in our case) are very hard! We needed support and information on what best to do to help our child when he was 2 or 3 and turned down for Salt because he had no language, when he was turned down for assessment because he was too delayed. However if this long wait had not occured ( and ds had been dx at 3 not nearly 8) I think parent groups run by various experts (the basics of asd, how to encourage language and comunicate with preverbal dcs, how to teach copying and skills, how to be your childs advocate and how to find help- manageing challenging behaviour, those sort of things.
The best help would be to give targeted support very early on - preferably before diagnosis. At 3 not 10!!

thanks for this, I read it all off to him and he took copious notes. I told him the number one need was a friendly face with a cup of tea and a box of Kleenex preferably from another parent who had been there done that had the t-shirt and had emerged fairly sane and he is now considering having a list of parents willing to offer such services. I did of course also suggest this place as a wealth of info and support.