Scared about the future (autistic children) - what to expect?

[SinkGirl]

My twins are now 4, both are autistic, non verbal, delayed across the board except for gross motor skills. They were diagnosed when they were. They both understand a lot from context and show excellent problem solving skills when motivated, but they don’t understand words.

I’ve just been through a long and brutal battle to get them into a specialist ASD school which they are starting full time next week. They both have 1:1 support full time there, at home our time is spent preventing them from injuring themselves and trying to keep them calm. Learning, playing with toys etc is limited despite my efforts.

I’ve been so focussed on getting them into the right school that I haven’t really allowed myself to think too far ahead. But now they’re about to start I realise I’ve been pinning all my hopes on the support they get there being enough for them to make progress and now I’m scared it won’t happen, they’ll never learn to understand or communicate, and that crushes me to think about - when they’re sad I don’t know why, if they’re in pain I don’t know what hurts etc. I can’t imagine going through life being unable to tell someone what’s wrong or share how I feel.

I need to know what their future will be but obviously no one can tell me this. Until now I manage by thinking very short term but I’m struggling to do that now. My brain is constantly running all kinds of possible outcomes, most of them not good. It’s just stupid things that are bugging me - they had their last day at nursery and the staff were in tears, and the boys have no idea they’ll never see them again. Or it’s about to be another Christmas where they don’t know what Christmas, don’t know what presents are, where we can’t put up a tree properly because the decorations are a hazard, etc. Seeing all my friends kids excited about Christmas is for some reason really upsetting me, which makes me sound awful.

It would be really helpful to hear from those whose children with significant difficulties relating to ASD are now older, teenagers or adults, to know how things have panned out. How do you manage? Are they happy?

Oh op your post me cry because I felt exactly the same when my dc was that age.
Dc is now 16 in a special needs school where he has been all through school age . Dc is also non verbal and always will be but he makes sounds like when he wants a biscuit for example .
It's hard but I don't know you get used to it .
You appreciate the small achievements like he was quite old when toilet trained and also he would regularly have accidents at night but hasn't for a long time .
He also gets very frustrated at times understandably hormones unable to say how he's feeling but mostly he's happy , he laughs he smiles he dances .
He's my son and I wouldn't have him any other way .
All those feelings you have are normal but you adapt yeah Christmas is not what you expect my dc didn't understand he certainly never got excited or understood about Santa .
My advice look for plenty of support groups in your area , they can offer advice or just understand.
Also they may understand words as they get older but the advice I got and I still use this now is use short sentences for example if you want dc to go and get shoes and put them on just say get shoes then put shoes on so it's like one thing at a time iyswim
Also pecs are good as it's visual dc uses pecs to communicate at school .
The school will be so good for them and definitely the right place for your dc .
My dc school the staff are amazing so lovely they are great with the dc .
Your dc are who they are and as long as they are happy then try not to worry.

Thank you for your kind reply @islockdownoveryet - I’m so glad your son is happy. They both use PECS but in a very basic way - they can ask for a specific item they want (usually food) but don’t yet understand it beyond that. Sometimes I think they’re starting to understand some words, and recently one has started taking both cups and handing one to his brother - the other one sometimes decides he must have a cuddle from his brother, but otherwise they ignore each other mainly.

I’m past the point where I’m desperate for them to talk - I think one of them will because he does try to communicate vocally at times, but the other doesn’t at all and I expect he may not talk. But he’s very bright, and weirdly he’s obsessed with written words and numbers and games where he has to trace letters and sort letters into words. He’s more likely to read than talk I think - if he can communicate some other way then that’s enough.

I expect I’ll feel fine again next week - I just have these periods where I feel so worried for them, and then I manage to switch it off for a while.

Yes you have to celebrate the small achievements ,my son is 10 and non verbal ,he's just about toilet trained although we still have accident,s ,he's also very loving and cuddly which helps ,I think finding friends with children with similar disabilities helps as they get it doesn't stop me worrying about the future though .

I can't tell you about the long term future but I have a 9 year old with severe autism and another genetic condition.

He has changed a lot since he was 4. At 4 he was non verbal. He now can talk, he will not have a normal conversation but can get his needs across, tell me if he is in pain etc. He has never been interested in toys and things like writing have shown minimal progress but in other areas e.g practical skills such as cooking, getting dressed etc we have seen more improvement.

He is also really happy in himself, he suffers with anxiety but is orherwise a very happy and affectionate little boy.

You mentioned Christmas. This used to cause him lots of anxiety at 4 but at 9 he now gets excited and likes the tree and all the lights. He is still not keen on the presents unless I wrap up his favouite snack.

So in summary at 9 lots of things are a lot easier than they were at 4. Progress in some areas is very slow but progress continues to be made and he is very happy. I sometimes think life is easier for him than those less severely affected as he seems largely unaware of his differences.

@Sinkgirl My ds2 is now 24. He is profoundly deaf and autistic... His autism wasn't diagnosed until he was 13.. It was masked somewhat by the deafness..
He went to a residential deaf school and college. He was at the end of college living in a shared house with support staff going in.. He "grew out" of the house so the charity who ran it rented a small flat 5 mins away for him. He has limited support there. He doesn't work but is a charity ambassador for one charity and a trustee for another..
He lives in a small town and when I visit I'm touched by how many people look out for him.
I never dreamt when he was small that he would manage to cope so well.

Hello everyone I am @elderflower14 son I am deaf and autistic.

I does lots of things I am trustee for my local group children with Downs Syndrome we goes out different places I help to look after the children and help with things they asked me to help them

That should have been @SinkGirl

I communicate using sign language using BSL and Makaton signing and I have pleasure of meeting Justin Fletcher as Mr Tumble he has been helping me with my communication along with Singing Hands and Dave Benson Phillips too

@Elderflower14 that is so wonderful - you must be so proud of him. And @RainbowWilf996 it’s awesome that you are helping other people, you sound like a brilliant young man!

One of my twins also has a visual impairment although we don’t know how much it’s affecting him, he seems to manage fine but how much of his difficulties are down to that, we don’t know. They have run about a million tests on him due to his complex medical issues and have turned up potentially something - just a mildly elevated result for now, but the test is being repeated. If that’s positive there’ll be more tests and possibly quite a scary diagnosis, so perhaps that’s what’s getting to me at the moment.

Sometimes I wish I had a crystal ball so I know what’s ahead for them - it’s more the unknown of it all that scares me I think.

@x2boys we definitely do try to celebrate every achievement. There was a long time where there was such little progress that I felt quite desperate but things have definitely improved for them and I try to focus on that. Plus I know they are in the best possible setting now and support so far has been sporadic at best so maybe things will change a lot.

@weepingwillow22 I’m so glad to hear there has been progress for your son - I know what you mean, they are so unaware of things that would upset others so that’s definitely a good thing sometimes.

@RainbowWilf996 my boys love Singing Hands too - they don’t understand signing and they can only do a couple of signs each, but they love watching them :)

Suzanne and Tracy has been helping me though the lockdown and this summer my town we did scarecrows festival me and my friends we did Singing Hands Scarecrows too!

@SinkGirl He's had the pleasure of performing several times on stage with Singing Hands.. They have been doing lots of online things during these recent difficult times...

I love it! They really are brilliant. Unfortunately I can’t get my two to pay attention to things on request but when they’re in the right mood they will watch Singing Hands videos for ages. DT2 particularly likes the ones in the car :)

My son is 18 now, he has autism and learning disabilities.

When he started school he was non-verbal and still in nappies. He used PECS to communicate - which was mostly to ask for food, he loves food!

He said his first words when he was 5, and was toilet trained at 5.5.

He's always been in a special school, he's in his last year (that's going to be emotional, it's a separate primary and secondary but on the same site, so I've known everyone since he was in reception) The school have been amazing, he's always loved it there.

He won't live independently, he's too vulnerable for that, but he could live in supported living. He's very chatty, but really only about the things he loves, his speech his very repetitive. He can read well, but comprehension is a problem so he doesn't read fiction, preferring to look at catalogues and street atlases, and astronomy books. He's pretty good at maths but doesn't understand the value of money. He's a really good cook, probably because he gets to eat after cooking!

He's done far far better than I ever could have imagined when he was 4. Like you I was worried for what the future held, and it still does worry me in some ways (I'm autistic myself so trying to sort out paperwork and money stuff always makes me stress) but I can see the potential he has. He's an absolutely lovely young man (and I got told that at his annual EHCP review this week, so I'm very proud)

My youngest brother (now 30) is on the autistic spectrum and my parents had to put in a lot of adaptations when we are all younger (my brothers and I are all very close in age). We had a few years where we had a felt green Christmas tree shape pinned to the wall all year round that was “decorated” with tinsel and other safer bits pinned to it during December. Stuff that wouldn’t matter if it got pulled down etc.

@SinkGirl

Easier said then done I know, but can I suggest you give yourself a bit of a breather? In adoption land we often say, put your own oxygen mask on before helping your children.
You’ve just won a tremendous battle on behalf of your twins, you must be exhausted. Given yourself and them some time to settle in.

My son has autism, and although not as severely impacted as yours sound, he has additional issues relating to his traumatic start to life.
At 4 he was electively mute and in special school, at 11 he was in mainstream school and you couldnt shut him up, at 16 he is in college and a fairly average teenager.
I’m not trying to give you false hopes or suggest that this could be your children’s future. Just that even it seems hopeless, there is always the possibilty for progress and for change.

Who knows where your children will get to, but you are giving them the best chance. Your children have a fantastic mummy.

@OhMsBeliever

My son is 18 now, he has autism and learning disabilities.

When he started school he was non-verbal and still in nappies. He used PECS to communicate - which was mostly to ask for food, he loves food!

He said his first words when he was 5, and was toilet trained at 5.5.

He's always been in a special school, he's in his last year (that's going to be emotional, it's a separate primary and secondary but on the same site, so I've known everyone since he was in reception) The school have been amazing, he's always loved it there.

He won't live independently, he's too vulnerable for that, but he could live in supported living. He's very chatty, but really only about the things he loves, his speech his very repetitive. He can read well, but comprehension is a problem so he doesn't read fiction, preferring to look at catalogues and street atlases, and astronomy books. He's pretty good at maths but doesn't understand the value of money. He's a really good cook, probably because he gets to eat after cooking!

He's done far far better than I ever could have imagined when he was 4. Like you I was worried for what the future held, and it still does worry me in some ways (I'm autistic myself so trying to sort out paperwork and money stuff always makes me stress) but I can see the potential he has. He's an absolutely lovely young man (and I got told that at his annual EHCP review this week, so I'm very proud)

That’s really wonderful. Food is their main motivator too! My boys are honestly the sweetest, loveliest boys and I know they are so bright (for example, when they were still in cots and DT1 couldn’t climb out because he was in a sleeping bag, he removed the mattress, pulled out some wooden slats, squeezed himself through the gap into the drawer below, pushed the drawer out and got out into the room... luckily they have specialist safe beds now!). I can see there’s so much going on in their heads, I just hope we can fund a way for them to express it one day!

Oh Sink I share your worries. I have two children with asd and adhd. One I can see may live in supported living and possibly on her own. She’s 11 and verbal. Her 7 year old sister I suspect will never live independently. She’s non verbal and although we use pecs she’s isn’t it very interested in communicating. She does say some words but it’s very much on her terms. It’s very scary to think about the future and to be honest I really try not to.

@Blueemeraldagain

My youngest brother (now 30) is on the autistic spectrum and my parents had to put in a lot of adaptations when we are all younger (my brothers and I are all very close in age). We had a few years where we had a felt green Christmas tree shape pinned to the wall all year round that was “decorated” with tinsel and other safer bits pinned to it during December. Stuff that wouldn’t matter if it got pulled down etc.

It’s not the pulling down I worry about - they have a problem with oral sensory seeking and Everything goes in their mouths and is aggressively chewed. Makes life very tricky! We’ve tried so many strategies but right now it’s just too overwhelming for them so we have to be really careful what they can access.

@SinkGirl I have 2 boys with autism ages 9 and 13. Both are verbal but huge amounts of my 9 yr olds speech is echolailic and there are huge communication needs present for both. We use a range of strategies at school and home to support communication including talking programmes on the iPad, PECS and still, endless patience and guess work. Both my boys are bright and sparky . It has taken a long time to help them begin to unlock their potential (my eldest was tipping over furniture and ripping bookcases from walls at school in sheer frustration until he was 10) but we are getting there. I am hugely proud of them.

Keep assuming competence. It’s so, so important. You already know your boys are bright and have the potential for language, even if that may not be in the traditional sense. They know you believe in them and will fight their corner. You’re an amazing Mum. Keep on keeping on.

@Ted27 thank you - you are right, I am absolutely exhausted and a bit broken down, I’m sure that has a lot to do with how I’m feeling. I am so glad to hear your son is doing so well after such a difficult start, you have obviously done an amazing job. Sometimes I feel like I am the last person in the world cut out for dealing with this, but at least I have been able to fight the bloody LA and go to tribunal and win the right school for them. If nothing else I know I have done that, even if I’m out of my depth in other ways!

@StevieBudd huge hugs to you. I think the fear and the unknown is the worst thing. We don’t have much family, none locally, and there really aren’t people for them to depend on if something happened to us. It’s a scary thing to think about and like you I try not to!

Sometimes I think we are lucky because their needs are so obvious that we haven’t had to fight for diagnosis, DLA etc - it’s all been very straightforward, until EHCPs that is! I know so many whose children are verbal but massively struggling and they have such a fight on their hands.

[quote Loopsisroundthetwist]@SinkGirl I have 2 boys with autism ages 9 and 13. Both are verbal but huge amounts of my 9 yr olds speech is echolailic and there are huge communication needs present for both. We use a range of strategies at school and home to support communication including talking programmes on the iPad, PECS and still, endless patience and guess work. Both my boys are bright and sparky . It has taken a long time to help them begin to unlock their potential (my eldest was tipping over furniture and ripping bookcases from walls at school in sheer frustration until he was 10) but we are getting there. I am hugely proud of them.

Keep assuming competence. It’s so, so important. You already know your boys are bright and have the potential for language, even if that may not be in the traditional sense. They know you believe in them and will fight their corner. You’re an amazing Mum. Keep on keeping on. [/quote]
I’m not surprised you are proud of them - that’s wonderful. Our kids face such huge obstacles and seeing them keep on trying and achieving things we didn’t expect is so huge. I remember when DT2 started portage we couldn’t get him to look at a toy, let alone play with it (he loved toys previously but then regressed). And it was like that for a long time. I still remember the first time he picked up a couple of blocks and posted them with no prompting, I nearly had a heart attack. It’s hard to remember back and realise how much things have changed because it happens so gradually, and then it becomes the new norm. We are getting there slowly :)

I have a 13-year-old son with autism and severe learning difficulties, he was diagnosed at 3 and started in a special school when he was 4. He was non-verbal and in nappies when he started school - now he is verbal, finally out of nappies and reading quite well. It has been a long road but each milestone and achievement has been celebrated! When he started school I would never have thought he would have achieved as much as he had.
Stay positive - your children will surprise you so much!

Thank you @Petitmum - that’s so wonderful. So pleased for him, and for you. Just shows how important it is to be in the right setting, and even more disgraceful that it’s so hard to get them into one!

Hi @SinkGirl i was just reading your post and wondered how you and your boys are getting on? x