Can I ask about autism if your children are older please?

[Melty]

My lovely nephew (5.8) was diagnosed with autism about a year ago. (It was fairly obvious to us though for a long time before that. It just took a very long time for the "system" to help. West of Ireland.. )
He is a beautiful child, fairly non verbal, very affectionate once he is comfortable with someone and seems bright enough. Seems to be pretty good with words and figures, has been able to read those big adverts on the side of the road for ages. Surprises us sometimes with stuff he comes out with - he will often say a very complicated sentence (for a 5 yr old) in context, but of course we could never get him to repeat it again! Likes his routine, and gets upset if it changes.
His biggest problems have been verbal communication and toilet training. He is only just using asking for the toilet for wees, poos are still a problem.
His parents, after a long (and exhausting) battle managed to get him into a mainstream school with autism support facilities, where he is doing very well. (There is a special stream for ASD)
He is loved very much by all of our family.

My question is, how do children on the spectrum cope when they are older. How do they cope with integration into society. Will he be able to live independently for instance. (I realise that every child is different, and no two experiences with be the same but would be grateful for feedback)
He was a much wanted IVF baby after 7 years of ttc.
He has no siblings, and his mum (my sis in law) has verbalised that she worries about what will happen to him when they are gone. I imagine that is a common worry for parents of children sith SEN.

Sorry that was so long, thanks for reading.

If it helps any of the parents reading this, both I and my dh are on the autism spectrum, and so is our ds. All of us have other disabilities/conditions as well.

DS has good friends, a good social life, plays rugby at national level and was school prefect and head of house for his school. He's just back from touring Europe with a group of friends and putting in his university application. All from a start where he was a bundle of aggression with little language, big stims and no interest whatsoever in talking with others or interacting with them on his terms. He's had his down moments and his struggles, but if anything those have given him such an insight into understanding other people.

As parents on the autism spectrum, we made that difference. So did his school (not a special school).

I think it's hugely important to realise that many people on the autism spectrum have great gifts as friends, colleagues, parents and partners, and that the future isn't guaranteed to be bleak.

Much more to be done to support parents and to enable young people to cope (especially those with other disabilities/differences on top of the autism, e.g. lack of speech, learning difficulties etc). But there is now much new research and much new hope that we can make a big difference to youngsters as they grow and develop.

I can't believe the responses on here. Thank you so much for all being so honest.
I don't think it will be easy for my brother and his wife, they certainly have not had it easy so far. Support in the Republic of Ireland is pretty appalling for special needs, and communication between various departments doesn't seem to happen. Every step of the way so far has been a battle. (The school they have gotten my nephew into is right around the corner from my parents, but we only found out by accident that the special needs section of it exists. They seem not to want to tell you useful information, but if you find out and ask about it, you get, "Oh yes, thats right, you need to fill in this particular form. Or "Oh, sure why would we mention it, thats not our department, thats x department".

If you don't mention something, they wont tell you about it! It beggars belief.
Thank God for the brilliant teachers and amazing headmaster in the school. They really are special, and have made such a difference to to DN, and becaue of the, to DB and DSis-in-Law.

DN had mobility problems, delayed walking with an unsteady gait, and hypermobile joints. Asked for a referral to paed physio, filled in reams of paperwork, told eventally there was a 2 year wait.
After all of of this, and it took about 3 months to get that far, found out there wasn't a community paed physo for the west of Ireland. "That position is currently vacant"

So they went privately, which to be honest was a struggle for them financially but you do what you need to do.
Same with speech therapy. They have spent thousands on a private speech therapist.
Odd technique, seems to involve wearing headphones and listening to classical music. Is that familiar to anyone?
( The only difference it seems to have made (to me anyway), is he loves Little Einsteins )
My brother took part in an appeal recently where they collected used mobile phones for Irish Autism, and got an iPad out of it. (They needed to collect 165! so they got one for DN with some incredible generosity, and managed to get one for the school too) I'm still collecting if anyone is interested- I put a post on the charities board under my name. DN, in the way of small children and technology, is pretty amazing at finding his way around it.
I , at the grand old age of 44, am just working my way around my first smart phone!

zzzzz I have ordered that book, thank you for the suggestion.
Wannabe thanks for your story. It is good to hear about things that don't go according to plan as well as the things that worked out. It helps get a balanced view. We dont know what the future holds but DN is loved so much by everyone, that regardless for what happens, I am sure we will be ok one way or another.

Ds is sixteen, we were told when he was diagnosed at three that he'd never be independent. He has made huge progress, he was non verbal until seven, he acquired normal speech, didn't talk for years (selective mutism) and now is just starting to speak again.He had extreme challenging behaviour and now he's an absolute delight most of the time and is never aggressive or destructive just grumpy. He sussed toilet training at seven, when he was ready I think because he decided and did it whereas I had many failed attempts previously.
I'm just accepting now that he won't be independent but will ensure that his care is secured long before I'm gone and he has older siblings who adore him so he will always have someone there to oversee his care too.

The headphones plus music is called auditory integration training (ait). It has been miraculous for some (there's a book about Georgie someone who responded really well) and doesn't work at all for others (ds1 ) my friend's dd was noticeably calmer after it. She was very hypersensitive to sound though.

I personally think that behaviour is definitely the thing to work on as it's that above anything else that limits access to life. Ds1's behaviour used to be extremely challenging in that he couldn't wait at all (not at all), and everything had to be exactly right or he woukd lose the plot. He had no understanding of consequences so no way to reason with him.

Fast forward a few years and he is much more manageable. So I can take him and the dog to the beach alone (would have been impossible a few years ago). Okay he'll still run into the cafe kitchen but I can say 'get out or no surfing' and he will.

Some of his friend's are far more able than him in terms of language and understanding and speech but far more challenging in terms of behaviours and often anxieties and accessing the world is actually harder for them.

We spent the early years desperately worried about speech - when it was entirely the wrong thing to worry about. I'm glad we did a lot of work on imitation (ds1 couldn't imitate at all - so couldn't learn anything by observation - it's the key I think to why his autism is so severe) but i'm not sure a lot of the other stuff had that much effect. He's always been keen to communicate though so it's always been relatively easy to teach him things like pecs, then Makaton and now LAMP as he's always been motivated by that.

Oh this is the book about AIT

www.amazon.co.uk/Sound-Miracle-Childs-Triumph-Autism/dp/0964483815/ref=sr_1_10?ie=UTF8&qid=1321435189&sr=8-10

A friend of mine's daughter has just qualified as a doctor,she is doing really well.She is also Aspie.

DD asked me if she thought she could be a surgeon if she was Aspie, I said that it shouldn't be a problem as she wouldn't need to worry too much about her social skills as her patients would be asleep :o

Luckily she did see the humour in it....:)

Having AS is fine if you are happy. Now, we're not all happy 100% of the time so that doesn't mean always happy. My sister who has AS and is 53, is perfectly fine much of the time but goes through phases of unhappiness which can lead to depression. However, she has no insight into her "condition" (for want of a better word), has no strategies and little support. I suppose therefore that, if you deal as best as possible with the problems then your DCs have a good chance. Most of the time my sister couldn't care less about being different, good or bad, and is perfectly happy. We have sometimes made the mistake of labelling her unhappy because we are projecting our own expectations, but there are certainly times when she is very unhappy. By the time we've all talked about it to each other and someone decides to try to help her, she's moved on and is oblivious! Mind you, it has got worse as she's got older. Her oddness is really extreme now but I believe she has done one of the best things to cope (for her) which is to live in a foreign country. She is the "strange" English woman, people assume that much of the missed social cues etc are language or cultural differences. She seems to fit in very well there and she is not the first AS person I have heard of this working for (reasonably).

"Fast forward a few years and he is much more manageable. So I can take him and the dog to the beach alone (would have been impossible a few years ago). Okay he'll still run into the cafe kitchen but I can say 'get out or no surfing' and he will.

Some of his friend's are far more able than him in terms of language and understanding and speech but far more challenging in terms of behaviours and often anxieties and accessing the world is actually harder for them."

Saintly, this is exactly the same as ds. He still has trouble with things like queuing but I can now take him along to the field with me and he will sit on a log while I sort out the horses, whereas before I couldn't leave his side for a second as he would be running off towards the gate - and the road with the nasty blind corner and the bus route. Sometimes I had to leave him in the car which made me a nervous wreck and I would keep running back to check on him so I never got anything done!
On the face of it the children at his school who can talk are 'less disabled' than ds but they can be quite volatile and very hard to handle so it is much harder for their parents to include them in family outings etc.

I have just typed a large complaint to SS regarding the lack of assistance they have given to us in assistance with DD3. You need to fight for everything to get any help for ASD kids.

I tend to find books more helpful. I have just ordered a set of books on Amazon including "The Red Beast" to help with her anger ishoos. Tried NAS, but I felt that they concentrated too much on the kids having a "disability" rather than trying to focus on strategies to help the kids.

Maybe just the group I was in, but it made me feel depressed and painted a very bleak outlook of ASD. There are hundreds of kids and adults that are coping as well as they can, and can hold down successful jobs and families etc.But NAS made me feel as if I was going to condemn my DD to permanent 24/7 care for rest of her life.Yes I know that happend,but made it seem it will apply to all kids. Focused more on what she can't do rather than what she can.

Having said that he is currently screaming his head off because his brothers aren't home yet (after school clubs) :sigh:

We've found what works and what doesn't now - so we have a fairly good idea before setting out what will happen. In the younger days we just seemed to get failure after failure. For example now I wouldn't even try Legoland - it would be pointless, but in the early days we would have given it a go. But I know ds1 well enough to know that say climbing, would be worth trying. Sometimes we give things we don't think will work a go, but always organise an escape route.

Rather belatedly - Amberlight, that was a brilliant post.

All of you, I wish there was a like button for your posts.