Autistic son? I don’t know what to do

[Sangeetafangeeta]

My son is 11. Bright AF, very well-behaved, not a single problem at school, ever.

His uncle (dad’s brother) is autistic. Very likely his paternal grandfather (engineer) too, and I often wonder about my DH.

My son’s problem (or is it my problem, seeing it through a female lens) is friendships.

He’s just not bothered about other kids. I can count on one hand how many times he has asked to see a friend. Never had a sleepover, rarely talks about friends from school (I know he does have some because I work at his school and see him), rarely gets invited to birthday parties. He often eats lunch on his own, hangs out by himself, and tells me he doesn’t know the names of most of the kids in his class. This is accompanied by a shrug. When he bumps into kids he knows he is unfriendly. At the same time he also thinks he is popular. With us he lovely and engaging and affectionate - and also incredibly grumpy!

Does anyone recognise what I have just described?

I’m so scared he’ll grow up to be a lonely adult, living in a bedsit and not taking pleasure in relationships.

Do I get him assessed? If I do, can this really help him learn to socialise, or is it just the way he is?

Thank you

Absolutely have him assessed.

He sounds like he is happy as he is but if he's entitled to reasonable accommodations in school and university he should have them. They can make all the difference.

Thank you so much for your kind words. Trying not to cry now!

Don't jump too far ahead.
He is happy.

First and foremost he’s happy. That’s the main thing. My son is diagnosed with autism and ADHD, had very few friends throughout primary school and a few friends now but he doesn’t like the term friend. In his eyes they’re people he knows and socialises with but friend is just a step too far! He asks me if I’m his friend, which I have to say yes to because he doesn’t understand I’m his parent first and foremost and then gets upset we’re not friends but he’s happy to travel along in his own little bubble. Friendships are hard work and need consistency and work to maintain. He’s not really up for that kind of commitment!
It wouldn’t do any harm to have him assessed and diagnosed, but I’m very similar to my son. I find friendships hard to maintain and will give a certain amount but as soon as I don’t get equal in response I’m done. I enjoy my own company and although the occasional night out is enjoyable, the recovery time isn’t worth it! I get peopled out very quickly and have less patience as I get older. I’m undiagnosed and have managed so far BUT I think a diagnosis earlier may have been helpful for me. Now I’m just a middle aged chubby mum with no friends, but I like it that way!

Yes, have him assessed. A diagnosis doesn't change anything in theory but it can open doors. It opened loads of doors for my son. He now has an EHCP (placing him at a wonderful mainstream private school which he loves), gets DLA (which means if there's anything that we think might benefit him, we can afford it), and because of DLA he even qualifies for carer' tickets to things like the theatre and theme parks, which means it is suddenly affordable for us - this has opened up his world. On the whole, he's living a much better life than he would have done without having an official diagnosis - it has transformed his life and probanly his life chances too. And our life is so much less stressful as a result as we know he has thr support he needs and that we can afford whatever he does need. I know things like EHCP are supposed to be based on needs rather than diagnosis, but in my experince a diagnosis helps PROVE the needs.

@SunriseMonsters At 11 many autistic children are coping ok, then everythinf collapses in YR8, 9, 10.

Is this a known pattern?

@MaidOfAle I know you didn't ask me, but I can answer! I paid privately and was told by paediatric psychiatrist they can compensate until the hormones kick in, then expect it to show a lot more once they hit secondary school.

This is exactly what happened to us! Text book! And it's not observer bias as other agencies were involved (school, GP, etc).

Anecdotally, this was us. Okish in yr 7, but when the split happened in friendships in yr8, ds got quite lost and exhibited some very troubling behaviours. Academically was fine, but mentally not so good.

Cahms rejected him because running away and other behaviours don't hit the threshold. Peads referred to nd clinic, who sent us a leaflet.

Currently in limbo, but 18 months of talking about autism with him, alongside growing older, seems to have resulted in a happier child, although I am concerned that his social anxiety needs very careful management. However, he wants to go to university and is aware that that will involve lots of other people, so he has to develop strategies to cope.

Yes - many kids cope 'okay' primary school, then enter secondary school and everything falls apart. Sometimes it takes a while for that to become clear because so many children are navigating the transition between primary and secondary school, and lots of kids are findinf that tough. When the majority of children have settled down though, others (ND children) are often finding things harder not easier.

I imploded in Y11. That seems later than other kids. I didn't know it was a pattern though.

Lots get picked up in the first couple of years of secondary school, but there will always be thousand of other children who don't. Lots of children (ND or not) have serious issues in the run-up to exams when it all starts getting too much. There are trends but it's hardly a rule!

And of course you get some who never 'implode' or 'collapse', or have any dramatic issue at all. I never did.

Thanks for this.

How did your son’s autism show itself? Was it social difficulties, or something else?

My son was breech born (some studies suggest a link with autism), walks on his toes, and has friendship difficulties.

He seemed to be always in his own little world, and we discovered he had hearing loss due to needing grommets but I suspect it was partly autism showing itself as well because it didn't stop when his hearing resolved. He still now has 'hearing' issues, which we learned from his assessments are definitely processing issues.

I also found myself accidentally parenting as one might for a child with autism. I only knew this when the paed psychiatrist suggested we read some autism parenting books and follow it, even before diagnosis. I found to my amazement I was doing it all already, and had been for some years.

He was distressed in busy environments but I mistook that for young child not liking loud noises like hand driers or fireworks and bought his ear defenders with us to help him. I should have realised he was autistic early on at times like the bonfire night when I found the only way I could get him to stop crying was to play loud classical music drowning out the crowd and fireworks. The same soothing moods/classical music he HAD to listen to in order to sleep at night (incidentally, that still works now!).

He would melt down during transitions so needed just the right amount of warning first, which made all the difference. He was popular in that the girls would fight over him; he would always be invited to parties and had 100% attendance to his own birthday parties, but didn't actually have a friend. Or a sleepover. Or even play dates really. Most of the time he didn't seem to notice but once he asked me if he's normal as he realises everyone has friends apart from him.

He is very black and white in his thinking, a complete rule-keeper, someone with a very strong sense of justice. This made him a self appointed advocate for kids at school, and actually got quite fed up of sorting out everyone's fallings-out!

He struggled in school but was the brightest of the whole year, yet slow to write and would be terribly forgetful. He would get upset that people expected him to take in information when he was having mental block, and when school were just of the opinion he's a typical lazy boy, it was hard to get the right support. This is why formal assessment and diagnosis has been a real God-send. I think if he continued to mask and learn social norms without understanding the context of them, he would have been in a much worse place because people would not have been as patient. Even just getting extra exam time is vital because he still has physical problems writing.

I could go on all night! He's very highly functioning but when it's obvious
, there is no mistaking it. He scored very high in a lot of areas, say for example normal range (NT) was 8-10, he would score 25 (ND). So was described as barn-door austistic and I felt bad for not pushing things more when I was told there’s no problem.