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.

watching with bated breath - I lie awake at night thinking about this, and no-one nor any book has every really shed any light on what might happen. Is that out of kindness ?
I really hope your thread gets some replies Melty

Me too.
I worry too, because its Ireland. Funding for special needs has been decimated, as there is no public money for much else either.
I have another nephew who has DS, but he has a brother and sister who would kill you rather than let anything happen to him. I expect that will continue as he gets older. Its just poor J, being an only child.

While he has lovely cousins, I know I am not as close to my cousins as an adult, (We used to be close as children) and can't imagine becoming a support person for any of them.

i was going to post the same question this week so will be very interested in replies :0)

My dd is 12 and was non verbal when she was young. We have worked very hard and she is in mainstream senior school now. It has been a long and very hard struggle. We have kept her in mainstream as we want her to live as normal a life as possible. So we are pushing for her to be part of a normal life. Her social skills are weak and the level of her education isn't great but she copes. I can imagine her living a normal life as she continues to make dramatic improvements. She will probably work outside in a garden centre or in a park as she loves that kind of work. Probably live close by but would be fine on her own.

I worried so much when she was younger now not so much. I think she could easily be independent something I couldn't even hope for in the past. What I would say is that she is a girl and girls tend to have very different issues from boys. She seems much more able to fit in that the boys who seem to be completely oblivious to peer pressure.

Also my dd is adopted so we are completely different from her birth family, she has a very different life from the one she would have had if she had been bought up by her birth family, who I would say were on the ASD spectrum. Many children with ASD have one or both parents who are also on the spectrum and so those with parents who aren't also have a much better outcome as they see their parents socialising, going out and mixing with other people. I believe this is one of the most important things that your ASD child see you socialising and gains confidence from that.

As you said Melty each child is different and some children develop rapidly after an initial slow start. Others make very little progress or seem to go backwards. It can be down to intervention and how much effort the family and school can put it. So it really is about how well he does over the next few years that will determin his outcome. I wish my dd had a relative as caring as you so hopefully you can help your nephew by taking a very active part in his life which could help change his outcome.

I'm not sure if I have answered your question as I don't know my dds outcome as an adult, but I am very hopeful that she will be get married and have an independent but chaotic life.

My son is 14 now. Non verbal at 4... extremely verbal (tho sometimes hard to understand as he sounds slurred) at 14, and has moderate learning difficulties along side his autism. he is in special school but in the last 2 years has started integrating into mainstream (we have a great set up..special school in grounds of mainstream) for a few things.

If you'd asked me when he was 6, I'd have said the outlook was pretty bleak.. he was so in a world of his own.. happy, quite affectionate but on a different planet.

Now..well he is always going to be autistic, he is always going to have learning difficulties, BUT the future doesn't seem so scary because we are getting there one day at a time, if that makes sense? I used to panic about what would happen when he's grown up.. now we are nearly there but knowing that I can't predict, can't make things perfect but can prepare him as best as we CAN to be as independent as possible..that helps.

He has come far further than we anticipated but will not be a fully independent adult, I envisage a semi independent living with support needed.. and I am going to make damn sure that he is on every list, FOR support. Getting in the system is important.. we have direct payments for my DS so that he can experience every day activities with someone other than us. We are currently 'bus training ' him..trying to get him taking a one stop trip to the sweet shop to teach him independence. It's a long hard slog but each small achievement is so worthwhile.

I would recommend having a look at the Cerebra website, and his parents making a will.. lots of issues to sort about who would help in the case of something awful happening (they can help sort out setting up trusts etc) as being proactive about it helps decrease the fear a little.

But don't look too far ahead.. some children with autism become quite able and independent.. others don't, and all you can do is support and encourage as much as you can:)

Toilet training... there are relatively few children who don't become toilet trained IME..and I have worked with children who have severe autism for many years now. The VAST majority get there in the end.. :):)

Ah yes toilet training I remember when she was 8 it being the bain of my life. Changing sets of sheets at night three or four times. Now it is just a distant memory.

Thank you daisy and medusa for taking the time to respond.
We are a very social family, and when the families get together and you can see the little man out on his own my heart breaks. All the kids play together, but J is often on the sidelines in his own little world. To be fair, the younger ones are very protective of him, and "mind" him, but it is hard to watch.
When he is on his own with us, we don't really worry about his progress or compare him to other kids. We just get on with it, but you cant help comparing with kids of his own age wen you see them together. We've been told he is currently about 18-24 months behind developmentally, but obviously we can't tell how he will get on in the future.
He has come on a lot since he started school, he was in a lovely nursery prior to that, but in the older child group , so he really didn't get the attention he needed. The staff were very fond of him, but he could have done with more 1:1 In his school, they only have 4 in his class!

I will show this thread to his parents. It won't stop them worrying, but it may give a little perspective and hope.

It's AS my DS has, so he was at a different start point if you see what I mean, but he's changed massively over the last few years (he's 15) at 11 when he went into secondary I would have been fairly sceptical about him living independently - now I don't see any reason he won't.

At 5 I don't think there's any way to gauge what he'll be capable of at all, but it's probably better than you worry about now.

It might be worth looking at something called Circle Of Friends which is a formal way to describe and identify support from family, friends and others.

Hi Melty - my ds has just turned 7yrs and I like you and many others lie awake at night and worry about the future, so I'm just going to tell you what I know for my ds (ASD) and whats worked. My ds issues lie in communication primarily social communication, no learning difficulties and happily in mainstream school with support. When he was 4yrs old my hair fell out with the stress and worry but unlike you I didnt have the close family network to help - mainly because I didnt ask for help or tell anyone what I feared. The fact that you have such a close family and are socially active is a huge bonus. It took me a good solid 6mths to toilet train and bizarrely he just started doing it in Galway on holiday after watching cousins nip off to the loo - those cousins will be your biggest help - he just has to be taught to play like them and to interact as he doesnt have the equipment to do it instinctively. What does your nephew like? Pick something he likes and create a very simple game that the other children can join in with around that subject - an adult should stay with him just to give him more encouragement. Little things like that help the social side but be aware of when hes becoming overwhelmed. Reading will help his speech but if your family can afford it and hes not getting speech therapy look at the private therapy. I remember the days of ds being 4 vividly and thinking I'll never talk to him properly, but the truth is he is improving all the time - he is socialising more and answering people more outside of the family, he can wash himself, brush his teeth, get dressed, get himself cereal, drinks - he writes, reads, understands instruction. If you had told me this would all happen when he was 4yrs I'd have had you committed because I thought it would never get better - but it did. DS has a long way to go and I dont know how life will turn out for him (but no parent knows that) all I can do is keeping working and teaching him things so that he can cope, it sounds easy but you must keep your mind to the present and keep nudging him forward ......they will always have ASD but think about the people you have known over the years and now armed with what you know I bet you can pick out some ASD traits and I'm sure they are all coping. For what its worth I think my husband is on the spectrum and we have been together for 19yrs have two dc and all the things considered "normal" - Hope this helps you Mel

Daisysue2, I have to say that I found this: Also my dd is adopted so we are completely different from her birth family, she has a very different life from the one she would have had if she had been bought up by her birth family, who I would say were on the ASD spectrum. Many children with ASD have one or both parents who are also on the spectrum and so those with parents who aren't also have a much better outcome as they see their parents socialising, going out and mixing with other people. I believe this is one of the most important things that your ASD child see you socialising and gains confidence from that. quite insulting to parents of children with ASD who are on the spectrum themselves. I believe that parents who share similar traits to their children can often show more understanding as they have first hand experience of some of the difficulties these children are faced with.

I know this is Melty's thread but I am SO grateful for those of you who have taken time out to write your accounts of how life is turning out later on down the line from diagnosis.
I know a few RL SN mums who I am going to point in the direction of this thread for a read

Thanks for agreeing with me zzzzz, I thought I might get a slating for my post.

I agree with pretty much all of your post, especially the bit about it being hard to be the only geeky anti social one in a family. I always felt out of place when I was younger, within the family as well as outside. I don't have ASD (though I do wonder about that sometimes) but I fully believe that my ds is far happier when playing alone, doing his own thing, and if that's what makes him happy then I don't see anything at all wrong with that. I LOVE spending time alone! :o

wont slate you aunty I totally agree with you. But read it and treated it with the polite contempt it deserved.....
BUT! now I speak I have my sons traits but have learnt coping strategies throughout life without help as my parents didnt notice I was different and I was great at hiding it. I dont shut myself inside the house all day, I go out infact I love it outside and converse with the odd person but no crowds for me unless DH is with me as I get tongue tied and irritable and cant think straight. But I am a loner and like my own company. I mix when I want to. DS funnily enough is only really contented when we are together on our own. He loves the rest of his family very much but we click that special click iyswim. I have it harder understanding my 2 NT children. But they still grew up into 2 lovely outgoing girls.

It helps me fight his battles in getting help. I can teach him what I use and then keep fighting for his other issues.

What matters above anything else regardless of if their parents have SN or not is love, support, determination and understanding.

For what its worth, I think every family bringing up a child is going to do the best they possibly can regardless of circumstance or SEN, and perhaps Daisysue didnt mean that post to come across the way it did.
I suspect every family will have their take on it and assume that their particular experience and lifestyle will benefit their children the most. And why not, we dont really know any other way...
Each family's own background and history will impact on the way they understand their children and access help if required.

Anyway, thank you so much to everyone who has contributed their thoughts and real life stories. It has really touched me and given me a lot to think about.

My poor ds1 has severe aspergers and now severe mental illness and is currently in psychiatric care. Coupled with raging hormones its the stuff of nighmares at the moment. Sorry if this is shocking to some but its our reality and I know the reality of some others on here.

Sorry to be a mood hoover. I just wish I had been better prepared. Good luck x

My DD is Aspie,and at the high functioning end. She is 13 next week.

Negatives-lacks organisational skills
Gets frustrated when she cannot "get" people
Lacks confidence
Can be prone to depressive states
Sometimes not aware of dangers
Takes tantrums and can be very angry
Can be very nasty and hurtful in her speech
Rigid routines
Interrupts constantly
Sings loudly-we need earplugs
Trouble sleeping as she goes over what has happened during the day and gets anxious.

Positives

Can be hilariously funny and has a great sense of humour
Does very well academically, but can be lazy
Loves reading books and poetry
Is very social and does have friends, that do accept her "quirks", will probably never be the popular set though,but who was at school?
Has a very enquiring mind
Does have empathy, was great with a friend that had a serious situation, and because she had dealt with it previously she managed to relate it to her own experience,but didn't molly coddle her.
Dreams of being a surgeon-no reason why she can't be (if she applies herself and gets the grades), there are many Doctors that are on the spectrum.

I think its a combination of the following things....
Three year delay in statement as he was high functioning resulting in him losing a coveted place in grammar school with unit.
Major problems in other schools so frustration.
Hitting the terrible teens and being frustrated my his condition and his awareness of it.
My lack of time and understanding. I have other children and knowing what I know now I would have just had him to focus on his needs. And its a minefield, accessing things and being aware of what is available. and the effect on them has been enormous as he is a bully.

Regardless of all the problems, not sleeping, refusing to use toilet, self harming etc he is very much missed and a much loved member of our household. The other children just accept he needs help with his aspergers and we are all off to visit him next weekend..........

I probably would have taken his depression more seriously and demanded something be done instead of being fobbed off. He was diagnosed with depression at eight though and we seem to have lurched from one thing to another really.

Susannelinder my ds wanted to be a doctor and my own GP told him most surgeons and neurologists he knows are aspie :}

Ds1 is 12 now and still non verbal. Which in many ways was my worst fear when he was 5. He started in mainstream with support but soon moved to a special school.

He's doing incredibly well. He's happy - and active. His behaviour is challenging but good enough that he can be taken out and about. He surfs every week

vimeo.com/28348727

ThaNks to a mumsnetter he's just been given a talker. I haven't really got going yet but I have just started putting together a blog to track how he gets on

alifeunlimited.wordpress.com

But they're all different. When he was younger he was expected to do better in terms of language etc than he has (well I expected him to do better) but he has come on so much in the last year I have given up guessing how he will get on.