Autism resources

[Lillypond]

My DS has just been diagnosed and although I can't cope with doing too much at the moment I'd like to get involved in something constructive.

Can anyone recommend a good book explaining what autism actually is? Nothing too heavy or about about problems in teanage years, just something to help me understand what is going on in his mind and why he does these strange things.

The other thing I'd quite like to do is make a visual timetable. I've got the board and velcro etc but need to print off some symbols. Can anyone recommend a website with free symbols to print off? I've been looking at the software for PECS and would consider buying that if it was better than what I could get for free. Or does anyone have a clipart package they would recommend that has appropriate pictures. I like craft so this seems like a good way to ease myself in to 'planet autism'.

Thanks in advance

Lillypond, Boardmaker (by Mayer Johnson)is an excellent piece of software for making visual timetables etc, etc. It should be all you ever need. It is however fairly pricey- a couple of hundred pounds at least(to schools that is anyway. It might be cheaper for individuals to buy. Maybe you could purchase it through your LEA.
Can't think of any books off the top of my head. The only thing I would say is that read something that is fairly short and factual. Every child on the spectrum is different (just as any child is different) and I know I have worked my self into a state reading about what might happen or what others have experienced.
Hope things get better for you-I know how you feel. It sounds like you are taking a good approach to things- slow and steady while you absorb all of this

Lillypond, does your son have an LEA support worker or portage home visitor, they would probably have access to this and be prepared to put together schedule for you. If you son is already at school this will make his day so much easier it would def be worth their while. If your son is non verbal they would also prob be able to help with a PECS (Picture Exchange Communication System) when he and you are ready.

Lilypond- what "end" of the spectrum is your ds. Mike Attwood is good for high functioning and Aspereger's. If more severe then something like Lorna Wing's books are good (for an overall view). Once you've settled into autism I would recommend George and Sam by Charlotte Moore- but not whilst you are still feeling raw.

Jessicsa Kingsley is one of the best source of resources- may be worth browsing to see if anything takes your fancy. I found Stella Waterhouse;s book "a positive approach to autism" very useful in the early days- especailly for understanding sensory issues, but it's not really a light read- it's quite heavy going.

newscot - at the price of Boardmaker. It's probably excellent but unfortunately way out of my price range. How would I go about contacting my LEA? DS has only just started nursery and the paed. hasn't contacted them yet.

Ellis - Haven't set up portage yet but might do soon. DS is verbal and does request things so I don't think he 'needs' to use symbols. I do think he would benefit from having a timetable though. Nothing to extreme, just breakfast; wash and dress; morning activity; nursery; etc... I might also do a 'bathroom board' with all the steps of going to the toilet, as if you say to DS 'go to the bathroom and do a wee' he will stand just inside the door and wee in his pants. He is very litteral .

Jimjams - As I understand DS is at the mild end, but not AS or HFA. The paed. thinks he may have learning disabilities as well but we don't know yet. I'll have a look at stuff by Mike Attwood - Thanks. BTW isn't there also a Tony Attwood? Or am I thinking of soemthing different?

sorry I meant Tony Attwood, but Mike mike mike -agh forgotton his name has also produced a great book for the higher functioning end of the spectrum....

STANTON! Mike Stanton!

LOL - Thought they might be brothers or something. I'll have a look on amazon. Thanks

lillypond, I presume your son's nursery is an LEA one?. If so, they should be able to put you in touch with someone. In fact you should be getting help anyway especially now your son has a diagnosis. The LEA may have some licencing deal with Boardmakers company whereby parents can access CD's of the program at reduced prices. Early days yet but I hope the help you need starts to fall into place soon. I taught in a nursery that provided autistic specific provision based on the TEACH method with communication focused around PECS (this is also good for verbal kids as it gives kids a scaffold on which to build their language).
Sorry for brief and slightly muddled message but it is tricky to find time with work and 2 young children (DD1 has hf asd)

Thanks newscot - DS was ill today so I kept him home, but I'll try to bring this up with his teacher on Monday.

This book is "heavy" lillypond but not that heavy. "Children with Starving Brains" by Dr Jacqueline McCandless. Its my bible at the mo. Everything you ever wanted to know about what is going on in "our" kids bodies and brains. You can get it pretty cheap on Amazon.com. It is the only and definitive book of its kind out there right now.

Thanks mamadadawahwah - I'll have a look on amazon

There is a book by a paediatrician in LA who treats autistic children. It is actually a book about vaccinations (What your doctor may not tell you about vaccinations by Dr. Stephanie Cave) but she also discusses the types of treatment that she uses on her patients who have been diagnosed with autism.

HTH

Thanks jabberwocky, I'll look it up.

Lillypond, I strongly recommend you start asking questions about accessing the NAS Earlybird programme. It will help you sort out what/how you need to do visual schedules etc. Social Stories might also be interesting (Carol Gray, Amazon/JK). I also recommend you look at Different Roads to Learning (I think its www.diffroads.com but not sure) as they have some great stuff. You might not want to order from the USA yet but just looking at what they've got might give you some ideas and some of the books etc are available on Amazon. The NAS website also has some good stuff. If there is an NAS branch near you, you might be able to borrow books without buying them. What area do you live in? This may be critical in the long term

Davros - thanks for all the tips. I'll go and have a look now.

We're in Mitcham (SW London/Surrey). We apparantly have above average supply of SALT's here, although I suppose that might not mean it's adequate. As for other therapies, I have no idea.

www.difflearn.com

Look I hope you lot don't mind, but I overheard dh recently express concerns on the telephone to a friend that ds could be autistic. Please could you tell me what to look out for so I can reassure myself? Thanks.

How old is he Rhubarb?

20 months.

I see, is that good then? All he does is point and grunt. He only walked 6 weeks ago. He get absolutely furious at times, really frustrated and he can't tell us why. He bangs his head on the table, floor, anything. He bites, he scratches people, he screams very loudly. Sometimes he will even act as though we are not there, as though he can't see us at all. I dunno, but my instincts just say that something is not quite right.

Rhubarb, you must be worried. Poor you. You need to tell us more (not that I am a diagnostician) but we need to know more about your son to say anything more.

Does he/did he follow your finger when placed in front of him. does he follow what you are looking at or when you say "look"?

DS points, but he wasn't doing it at 20 months. He's 3.8 yr's now and he's only started doing it recently.

If you're worried about his development in general maybe you should get him refered to a Paediatrician.

My son at 20 mos wasnt too interested in what i was doing. He didnt point. He didnt follow what i was looking at. He would play on his own a lot, but it wasnt really playing, it was fidgeting. Does your son have good imaginative play? Does he get excited when he sees you and does he get cross when you leave him on his own?

My son didnt care at 20 mos. I could have left him and he wouldnt mind.

mamadada - I don't think my DS even knew who I was at 20 mths