help with support for new autism diagnosis

[cass66]

Hi, a friend of mine has just had her son diagnosed with autism. he's 12 and currently at main stream senior school in Leeds.

She is totally overwhelmed with the whole thing, although relieved to get a diagnosis after so long. She works full time and is separated from his father.

Can anyone recommend useful websites/support groups (esp if local to Leeds) or networks or books or other resources please. (she's not on mumsnet).

Also, he has trouble sleeping (I presume a problem with being unable to 'switch off'). Any ideas to help??

thanks, Cass.

Hi cass66. Even if she was expecting the diagnosis it can be a very hard thing to get your head round. The basic starting point would be www.nas.org.uk (it should have links to local support groups/resources etc). There is a very informative website by an adult writer/artist with autism - www.donnawilliams.net.

Book wise - jessica kingsley press or winslow publications have a lot of books relevant to parents of kids with ASD. In particular Freaks, Geeks and Aspergers and Martian in the Playground may be useful. The city library should have a reasonable number of books on the topic too.

In terms of sleeping - I suppose it partly depends on whether he actually needs the sleep or not - if he doesn't need the sleep, then I guess it's more a case of encouraging him to occupy himself quietly in his room! alternatively sometimes a paediatrician will prescribe medication such as melatonin to help with sleep.

Hi cass66. Is your friend currently getting DLA (Disability Living Allowance) for her son? If not it may be worth her getting the forms. When I was given my sons ASD DX I was advised by the Paed to apply (I haven't yet) and to contact a local run charity for help completing them as apparently there is a specific way they should be worded.

I hope your friend gets the support she needs.

Forgot to say. My DS also has trouble sleeping and I understand it is very common with ASD. We cope by encouraging him to read or listen to the radio (with headphones) to help him relax - and we get a little longer in bed. But this took years to get to this stage and is very exhausting.

The following website is for Early Support and is aimed at ages 0-5. There doesn't seem to be anything aimed at the ages above this which provides all info in one place.

BUT it is still applicable for families with older children in many ways and I would recommend ordering the materials through the link to the order form. I got mine the other day - very quick & delivered in days.

The materials are FREE and delivered to your home.

www.earlysupport.org.uk/decMaterialsZone/modResourcesLibrary/HtmlRenderer/Materials%20home.html

All I can think of for the sleeping is the various things I do with my 2 sons.

Encourage changing into pyjamas that bit earlier in the evening, relaxing in bed from earlier, no pressure to sleep, just chill in bed.

No confrontations about school stuff etc, just keep the interactions kind and supportive, also nice and simple.

Sit with laptop/book/cup of tea in the bedroom as a friendly person until he is happy for her to go away.

I had a phase of sitting in the dark near my son's bed. We'd talk and I would deliberately speak more slowly and gently than normal. I'd yawn deliberately too! I had a comfy chair and would relax deeply too. We'd discuss his favourite topics, very child led. I'd put a hot water bottle at the end of his bed, his feet and my feet would get warm on it. And my son used to have a thing about touching feet in an affectionate way anyway.

HTH