aurtisim

[charliesmum]

My 12 year old son has only been diagnosed with aurtisim for 2 years .We've been through hell and high water with him and the lack of communication and help from medical people .The dammage is already set within my son now through years of mental scars from abuse and miss treatment from others because of his problems .I get no help with him and now as hes reaching teenage he is becoming harder to handle .Is there any body out there who knows what we are going through and could help ?? where do we go to find help for him ?

My cousin has a 5-year old son with autism. He has had "A.B.A" (Applied Behaviour Analysis) therapy, with some success. Here is a helpful Web site that I found:
members.tripod.com/~RSaffran/aba.html

best of luck!

For info on ABA contact PEACH at www.peach.org.uk
There are organisations that specialise in ABA for "older" kids. PACE also worth contacting although they campaign rather than represent and NAS has parent-to-parent, befriending for the chld and an advocacy service. There's lots more but you may already know all about this as he is 12. Also suggest you visit the Special Needs section on Mumsnet

Well just an update on home life , We now have 2 Autistic childern Bens younger sister age 11 has if i can spell it Pathalogical demand avoidance syndrome and ADHD, hey a double whammy eh! Ben has become very and i mean very violent towards us it isnt the first time i have took a punch or two Ellie is a wind up merchant which is part of her disorder she is on Ritalin which is a god send i dont know how i coped before with her, she is stilll gobby and a real hand full but not anything as bad as she was , We now get DLA woohoo its a strain taken away as you know these kids are obsessional and it helps pay for all those gadgets to do with radio controled cars etc and the odd holliday for them . It got that bad 2 weeks ago that i ended up on seditives i cant cope with Ben love him to bits but i cant cope ive called the social servises they dont want to know ive called the disabled kids nurse who is brilliant but i get her answer phone all the time my parents have told me they wish to adopt him !!!!!! what bloody answer is that he will only feel rejected by me wouldnt he ,Ive took on the school to help him with the bullying but its still going on . and im sorry if this sounds all daft all over the place but its the seditives they maky my eyes/head wierd. has any one any stratergies to help us any thing at all ?????

I'm really sorry you're having such a hard time.

There is a website called paains.org.uk - the forum on there seems to offer a lot of helpful advice and support to parents with autistic children. My own son is on the spectrum but is younger (aged 4) and is high-functioning, so I don't have any direct relevant experience.

Sorry I can't be more help,

Charliesmum, have you thought of trying medicaiton with Ben? There is one called Risperidone, its different to Ritalin. There's been some research that shows its helpful for individuals with ASD (New England Journal of Medcine I think). Its supposed to deal with agression and anxiety. Might be worth a try if your not anti-medication. Otherwise I think you've had a sh#tty time but glad you're getting DLA now.

Davros , ive heard of Rispiridol , my brother in law works in a school for naughty agressive kids and he has told me that even the ones who throw furniture about that happens to of been bolted to the floor are reduced to zombies and cannot function at all on the stuff they just wander about red faced glazed over , Ben is 13 and well you know all about hormones i cannot help him understand why he feels the way he does he is very violent but i dont want him on that stuff as he has little to no personality as it is im sure that stuff would just cripple him .As for my daughter , well shes a different kettle of fish all together she needs her ritalin dosage upping as i belive they become tollerant to it after a while and when she comes in from school, you know it its like having quads with her her fave is to stand naked on her window ledge with the lights on ...........its hardly a wonder she gets hasstle off others but ive tryed all sorts of window coverings im looking for a frosted effect one but up to now im still looking. Thanks any way for all your advise im up for any ideas as im at a loss now .

charliesmum- I think you can demand that SS carry out a care assessment. They should be able to provide you with direct payments (davros may know more) to allow you to employ someone to help out. My friend is currently going to appeal so i can let you know how she gets on. other friends have been given direct payments fairly easily- may be worth enquiring about (of course the friend going to appeal is the one who needs it most- typical huh?)

Quite understand about the risperidone (risperdal is the same I think). Jimjams is right, you can request an assessment by Soc Svs and, if they decide you need help and how much, you can then opt to get direct payments. They cannot refuse to pay you direct if you ask for this. In my borough, and I don't know if its the same everywhere, setting up the direct payments is quite complicated and quite a lot of admin but fine once you get started. Really don't know what else to suggest unfortunately, sorry its all so sh#te

I've just read this post, and I need some advice???? my son is now almost 17months old, he was prem by 6weeks, he has a CHD (4 heart defects), an exomphalos at birth(intestines outside the belly) 7th nerve palsy(facial stroke) overlapping toes(loses balance), and last friday at his developemental check I was told he had a lower end autistic spetrum disorder. How old before a child can be diagnosed? What should I be looking out for? What else can I do now? I receive DLA and CA, as he keeps me up most of the night, he will not sleep for more than a couple of hours at a time. He is on DUOCAL to increase his weight, he is just 10kilos this week. He uses just 3words, mam,baba, and anne. And will hit you if he wants something. I have a 9year old and 7 year old, they are both healthy.

who dxed survivour? It is rare to be dxed at 17 months- and very unusual to be given anything other than something broad like "communication disorder on the autistic spectrum". Was it a paed who dxed?

If it has been dxed by a pead the first thing I would investigate is whether there is an NAS Early Bird programme near you. Very worth going on if there is. Do you get portage? You can self refer if you don't. Are they going to give OT or SALT? You sound a bit as if you have been dxed and dumpe d (which I hope you haven't).

At 17 months one of the most obvious signs of autism would be lack of pointing (although the normal range of development is up to 18 months so its a bit early). There is another thread with a long list somewhere. It's near the top of here
www.mumsnet.com/Talk?topicid=8&threadid=15401&stamp=031217182543

Hi JJB's we were seen by a paediatric Registrar at a developmental Review at Cedar House, St. Michaels, which is part of Chase farm hospital. She told me we would be seen in 6months, in the mean time we see a dietitian and speech therapist bi-monthly. Next one is at the end of January. I will ask about the Early bird programme, HV is very pratical. Sorry but I've not heard of portage? SALT probably as we are under the speech therapist because of his facial palsy. Pointing is not something he does, but then he had no strength before his heart op, to do anything. Once he had the op, he has improved, he is walking, can now chew. But there is no speech, and he does ignore me alot, and he is never still. The paedi did say it was too early to diagnose, but there were signs........ It's nearly xmas, theres not much i can do until after the holidays.