A positive story about your child with autism, please?

[Positivityplus]

Hello, I've got a 12 year old DS with autism. The social side of life is very challenging for him. He'd love to have a good friend. I've just had an email from his school basically saying that the two girls he's managed to make some sort of connection with in the past need "their own space". My DS doesn't even spend much time with them these days, but hey ho, you can't make people be friends with you.

Anyway, I'm feeling a bit down about it, because he's also had incidents of bullying to deal with and now this. So, if you have any positive stories about your child with autism, diddly or adult, I'd love to hear them! Any tips for navigating life as a teenager with autism would be great, too!

My DS2 is 25 now.
Non verbal til 5 (and incomprehensible til about 9 or so) Special schooled, very very delayed academically, but learned to read eventually. No GCSES or anything.
Went to special needs college, then a MENCAP traineeship, who got him a few hours supported work in the local Supermarket....
He now works there full time, is AMAZING at his job, and it gives him repetitive social interaction with customers who know and love him.
He has two friends..both from his Special school, and he is able to go out and meet them now and again (always goes to the cinema with one friend as he can't walk and it's easier, and sometimes to the pub for lunch with the other!)

He's not 'high functioning' but semi independent.. can't drive, can't cook or look after his own health and won't live independently...but adult life isn't bad... he has two friends, a job and he's lovely :)

If someone had told me that when he was a non verbal 5 year old lining up pencils (and eating them... he still eats wood, paper and plastic) I'd have sobbed!

DS has just started to be aware that he has never had a friend, but that others do. He has berated me for not having more children!

But you know what me and DS have a great relationship, as does his Dad and him. It’s unusual in that there is not a lot of two way conversation, but then there was a long time when I didn’t know if DS was ever going to speak at all.

DS is funny, very caring, a lot of fun and very interesting.

So I think, if DS can form such a nice bond with me, then I’m hopeful that he will form an equally great bond one day with friends or a partner. 🙂

@Fantasticaldolphin my DS is a little older than your DC, he’s just turned 5. Until recently he’s been mainly non verbal. Mainly anything said is echolalia.

Within the last few months he’s make some steady progress applying copied phrases into context, ie; shut the door, go to the toilet. Started copying nursery rhymes and making up actions to go along with words. He’s nowhere near at the level of his peers but I’m so proud of him.

I really do feel for you. We did three years of PECS, makaton, nothing helped and to be honest we’d given up with everything and just kept modelling play and modelling conversations. I hope this gives you some hope that things can improve and again the offer to talk is there.

No personal stories but there are a good few people at my work who are autistic (I know because in our recent de&i neurodiversity sessions they were talking about it) and they’re just fine, adults with great jobs, doing fine. Lots of engineers and techy people.

Realise I didn’t actually share any of the lovely things about DS there 😁

He has developed an absolutely savage sense of humour, things like bringing his bald father a hairbrush and telling him to brush his hair (smirking all the while!)

He’s had a baby brother recently and his ability to care for another human being has astounded me. He’s so kind snd caring, if I say the baby is tired he’ll go get his own pillow and duvet and make him a bed on the rug, will bring him toys if he’s crying, making silly faces to make him laugh. It’s beautiful to watch.

@Positivityplus can I please send you a message? X

@Lwrenagain
Absolutely, please do. 😊

@GandhiDeclaredWarOnYou
Thank you, that'll be great. 😊

I had severe situational mutism as a child and struggled with communicating in general. If a teacher wanted to ask me a question at primary school they would have to fetch my older sister, I’d whisper her the answer and then she’d speak on my behalf. I also have a lot of PDA traits.

I found my voice at 16. Went off to uni and became a teacher, first in FE then in HE. By the end of my 20s I delivered a lot of CPD at institutional wide events, which often involved delivering presentations to 300+ people. I also have a happy marriage and a wonderful daughter.

@BlossomBud what a lovely story, great that you found a good life.
@Fantasticaldolphin yes my DS was non verbal at 4 years (he had a bit of echolalia but none of it used as functional language) and not only did he not understand ANY instructions, but he did not respond to his own name. He basically had almost zero receptive language. Now he has been assessed and is average for language, which is pretty amazing.

My dd has dyslexia and autism. She has a small but lovely group of friends, passed her 11+, goes to grammar school where she’s regularly top of the class, and while she does struggle with some things (eg hygiene and food being the big ones) things are much better than I thought they’d be when she was 5 and still wearing pull ups. But her schools really helped push for all the support she needed.

Both my sons have autism.

My eldest son was in nappies until he was 6.

He was very aggressive. He would throw himself around, hit, bite, kick. He broke my nose. He wouldn't allow you to cuddle him. He'd go rigid. If you went a different way to the shop he would completely melt down.

We were told that he would never learn to talk. That we should teach him makaton. That we should put him in a special school. We were accused of being in denial when we said no to that.

When he was 7 he started to talk - at that point he sounded like a toddler. He continued to have soiling accidents until he was 10. We were told the best we could expect would be he would be able to live in a flat with support as an adult.

I remember posting on here from when he was a toddler and we were going through all that.

He didn't have any friends. When he was little the NT kids were 'kind' to him primarily for the praise it got them from teachers.

Then he got to secondary school and all pretence stopped and he just got bullied.

We did all sorts. Involved him in clubs for kids with autism, that sort of thing. He made a friend and that was wonderful while it lasted but the friend grew up and no longer wanted to be friends because my son still liked to be 'silly'.

He is now 23. He has his driving licence and a car. He is about to finish his degree. He is in the process of buying an investment property overseas.

He attends a social group for autistic uni students, they get together for a range of activities.

Socialising is still hard for him but he is putting himself out there. He is emotionally immature for his age and has stims and obsessions. He is and will always be autistic. This is who he is. He would make anyone a wonderful friend if they would just give him a chance and accept his autism as part of him.

So massive achievements for him in many ways but other people's prejudice a barrier in others.

My advice is look for social clubs and groups for autistic teens. Help him build friendships there. It's a waste of time and effort hoping for friendship from NT kids. (This is simply my experience.)

My younger son is 22 and going through significant challenges but we are confident we can continue to support him through them.

She's now a successful software engineer. Lives independently and earning good money.

Will always struggle but knows where her weak points are. She benefitted from some counselling that helped her understand herself.

Hi OP, I'm an autistic adult. I didn't find out until I was 30, it changed my world.

Never underestimate how positive it is that your child has a loving supportive parent - regardless of anything else, this is what will make the biggest difference to them in the end.

Speak with your child about what they find hard, help them navigate social situations by talking them through with them etc how to buy something at a shop, make a phone call, how they do things they might find stressful. Strategies are so helpful to have.

My friend is autistic too and his parents were told that he'd never work, drive a car, have friends etc. guess what, he's done all that and more!

I'm autistic (found out when I was 40!) - had had a pretty terrible career of never fitting anywhere, got diagnosed and career changed very dramatically. I'm now a speech and language therapist working with adults with learning disabilities (often with autism among the various conditions they have), love what I'm doing and presented to over 300 current SALT students about my job and about doing it as an autistic person myself.

DD2 is also autistic - had minimal intelligible speech aged 4 (this sparked my career change off) - and now is a wonderful, kind little chatterbox who gives amazing cuddles, holds her own academically in class (despite other challenges), has the messiest bedroom you'll ever see and is just "her" perfectly.

@CoffeeWithCheese
You and your DD sound wonderful. 😊Through having done lots of speech and language therapy with my own DS for many years, with guidance from his speech and language therapist, I have considered training as a SALT. Can I ask how long it took for you to qualify and if you studied full time to do so?

DS21- I'm so proud of him although I'm very knackered; currently completing a Level3 Btec, kept up with work experience (animals) and surfs. What more could any mother want.

It's taken awhile and moving mountains, but nothing like the little boy spewed out of education by some dimwits when he was just 6-7.

I'm really enjoying hearing such positive and lovely stories, thank you so much for sharing. All of your experiences have touched me one way or another, from your past struggles resonating with my own, to hearing the pride with which you talk about your DC, which is just so wonderful.

I've also really appreciated hearing from those who are adults with autism. It's been very insightful to learn how life can be like as an adult with autism.

DD is 10 and joined a music theatre group a year ago. It seems to really suit her - the right mix of structure and messing about. When DH checked with the producer before she joined, he said, I think she'll find her tribe here. And he was right!

DH (who is undiagnosed but has many of the same traits as DD) is happy as a university lecturer. We watched the BBC documentary with Chris Packham recently and he got very upset by the story of Fleur.

I have known him nearly 30 years and didn't realise until DD was diagnosed how different he felt to everyone else.

I'm still reading his and it is giving me hope. I ve had feedback tonight that ds is starting to do a bit better at school particularly in maths.

My question is for parents of children who soil and don't want more. Are you able to explain what changed or was it simply that things improved maybe gradually or a big bang

Thanks in advance

@demotedreally For me I put a lot of input into DS, one to one, and didn’t just take it for granted that he’d learn to go to the toilet or to speak by himself. It took 2 years of patience before he was toilet trained. At his specialist school, they didn’t do any one to one or small group work around speech or independence and he is lagging behind there, took until he was 8 to go to toilet at school and I was the one to manage this from home!

Maybe some children will ‘naturally’ get there, but I think for some kids like DS they need a ‘rich’ environment of patience and opportunity imho.

Dd was diagnosed in primary. Y7 & Y8 were very difficult and we had lockdown in Y8. Y9 was a revelation. She made friends. Really nice friends. Y10 she made more and picked up an out of school activity at which she made more friends. In Y11 she's got loads of friends and is doing well at school (mainstream) and we're planning for college next year. She goes to parties regularly.
This from a girl who was the 'most autistic child' her school had ever had, has an EHCP and nearly dropped out in Y7.

@Positivityplus it's a brave, positive new world out there for autistic/SEND people. I really recommend you buy 'Ten Things Every Child with Autism Wishes You Knew' by Ellen Notbohm. There really is a bright beautiful future ahead.

@demotedreally
For my son it was medication (Lactalose. ) And dietary changes.

After years of being told he didn't care/understand and that he liked playing with it 🙄 we finally got a doctor to look past his diagnosis of autism! It turned out that he had chronic constipation and non coeliac gluten sensitivity. It's quite common that autistic children have bowel/digestive issues.

We started giving him the lactalose and a gluten free diet (back then you got food staples on prescription but the range of gf foods available in supermarkets nowadays is fab).

We were able to gradually reintroduce gluten from his late teens and now he has only intermittent issues if he eats too much crap, is stressed or run down etc but he knows how to deal with that and doesn't have any accidents.

I did a BSc (you can get student finance for it as if it's a first degree even if it's not because of it being an allied health profession) which took 3 years. I originally had my eye on doing the Masters route but I'm bloody glad I didn't as it would have been massively impacted by the pandemic and because of how our course structured the placement timetable we avoided the worst of the disruption.