I’m 90% convinced ds10 is autistic

[Foxton20]

Ds10 was diagnosed with global development delay at the age of 2.5. He was non verbal, couldn’t walk and constantly hand flapped. They said they wouldn’t diagnose him until a year later. Around this time my PND was extreme (my mum died when he was 6 weeks) and I didn’t stick to the meetings etc.

Fast forward years and he’s just turned 10. Life is very difficult. He’s The most loving boy and extremely smart (he’s just say a maths challenge for the county!) but he struggles so much socially and emotionally.

we feel like we are constantly walking on egg shells, he can’t take any jokes, he gets angry over anything, says what he thinks without thinking etc.

It’s the emotional outbursts at everything that’s causing us issues. It’s been going on since he was around 4/5. He could be so happy and funny then a switch and he’s crying, stomping, doing this hysterical cry.
His teacher mentioned she’s notice he’s impatient and can’t seem to wait, or tbat his peers can’t joke with him as he gets offended over everything.

I don’t know what to do, I feel like Iv failed him. I don’t know how to manage it anymore. It’s every single day, from the moment he gets up at ridiculous o’clock until he goes bed. He moans but it’s not jsut a moan it’s an over the top shouting, whining etc.

Do I take him doctors? I really worry. His “dad” has adhd and anger issues.

Iv trier speaking to senco but nothing, Iv rang about 7 times.

He has friends but I wouldn’t say he has a best friend. One of his friends mum said that they always argue but I think it’s because Ds gets stressed out over and angry.

He hates change. He is by far the best at getting ready every day. For the past 4 years he gets up, breakfast, washed and dressed without me even having to mention it.

Oh my god and food is a big thing. He HAS to have breakfast and lunch and tea at the “right” times. And if he hasn’t ate lunch by 12.30 my god he gets so upset.

He’s a good reader, he’s definitely caught up from his GDD, he’s actually above his age at school.

He corrects me if I say a word wrong 🙈 I have dyslexia and struggle 😂

I’m so glad I posted here.

Iv been so stressed about it for years, worrying about how we will cope once he’s older and hormonal. But I feel like if we ended up finding out it was because he’s on the spectrum I would feel more equipped to deal with it. Atm we are
Living with the unknown and what do we do to make him happier?

When you say you got nowhere with the senco, what actually happened?

You need to formally request in writing that they get the EP in now, and ideally OT.

If he’s really smart but struggling like this, he is unlikely to reach his potential and on that basis, you should apply for an EHC assessment.

The legal test at 36(8) of the Children and Families Act is the bit to focus on; “the Local Authority must secure an assessment if the child or young person has or may have a special educational need which may require provision in the form of an education health and care plan”

The fact he had GDD and now is very very bright screams not NT .. get him assessed , pay for a private Ed psych if necessary ..

Fox I would start using email for all your contact with school (don't worry about the dyslexia). We have always emailed and it gives you evidence and leaves a paper trail of all communication. Too often phonecalls are never replied to.

Whatever assessment or support you end up getting, I find that sometimes it’s a very general approach. Could you be specific even now and also even with your son and write:
As specifically as possible what the main difficulties are. What helps. What’s not helping. E.g. poor social skills - well what exactly? Is it language? Is it poor theory of mind?
Any strengths that could help with these difficulties.

As it could be a ‘diagnosis’ or not - however your sons individual challenges will remain these - and even though some diagnosis will unlock supports you can get started looking at these now.

the thing is Ds is there is no room for discussion or reasoning, I couldn’t sit him down and ask him what’s wrong because he gets so emotional or angry and thinks it’s because “I’m so mean”.

He can be the most loving boy, but 90% he’s hard work and tiring. You can’t just have a normal conversation with him because he questions everything you say, he always has to be right and even googling something Doesn’t stop him believing he is right.

Things like youngest Dd isn’t allowed anywhere near his room. He screams and cries if she tries to say hello to him, declaring it’s not fair and we hate him and he never gets time to himself 😑.

About senco- I spoke to his teacher and mentioned I thought he could do with some sort of therapy. He doesn’t see his biological dad, he walked out of the older twos lives when he was 4 and never looked back. They have an amazing step dad now who has completely stepped up but with the stuff Ds has seen/heard from ex husband. I think he worries he will be like him, he had anger problems and ended up in prison due to them.

It’s my genuine fear.

The school won’t sort therapy. This is where you have to push back and exercise your statutory rights, and put everything in writing. You have to become That Mum because no one else will advocate for him. I’d do it right now, because the wheels really DO come off in seniors.

Thank you

How do I sort it out?

Another thing Iv just remembered (sorry I’m blabbing, my memory is awful from the PND/ptsd I had!) That he had a few blood tests before they would diagnose him? Is that a thing?

Fragile x syndrome! That’s what they tested for?

Stop phoning the school, it’s not achieving anything. Go in there, talk to them. Email them for a meeting. Go to the GP and speak to them about your concerns.

keto is right. Ds went into secondary undiagnosed as he had just about managed through primary. Secondary has been very difficult and it took 15 months from referral to diagnosis. I should have pursued an assessment much earlier. Ds now has ongoing mental health issues caused by lack of support.

There is no therapy to sort autism, lovely! There’s support for the child and families, and help to make the most of their amazing neurodivergence but therapies are focussed on helping everyone just get on with life.

Blood tests? Presumably they’ve ruled out fragile X? Autism occurs with some genetic conditions, or totally on its own. And that’s assuming that’s what he has, but the point is, no one knows without a full set of assessments.

Thank you everyone.

Yes he had the test twice, I think they were ruling it out. I remember vividly being in a room with the doctors, nursery manager, health visitor etc and them claiming it was due to my PND that he wasn’t hitting his milestones and the reason he is how he is. After that I turned down every appointment and changed nurseries. I wasn’t very well but I tried my absolute best.

I just want him to feel loved. He doesn’t, and I don’t know why. We spend time together alone without the others. I try and get him to do things like watch movies etc but he gets bored and wants to be in his room.

So I’m ringing the doctors tomorrow, I go on my own?
Going to write a list of things, about his dad too.

Then I wil ring and email the school.

Regarding therapy, I was thinking more counselling but I don’t think he would do it.

I’m so scared about him going secondary.

Is there a school which you think would be most suitable for him? If you get an EHCP you can name the school you want, which can often be a huge help just by itself.

First job is get the Ed Psych into see him in school.

They probably did genetic testing if he had gdd .. obviously that wouldn't show autism ( unless it had a genetic link) so the bloods were probably that .. did he see a developmental paediatrician? I guess he must have been diagnosed as having gdd by someone ..

Keto, why is that a job?

You see I thought schools were working hand in glove with dp to sort this stuff and get best results for dc?

Surely Ep triggered after on going obvious issues?

There clearly ARE issues, masking, bottling up and exploding at home, and a decent EP will be able to spot the triggers and put in place some mitigating actions even in the short term.

Hi Op, with my sons’ School the SENCO there gets support from the council educational psychologist and can arrange for the child to see the Ed psych that way. Perhaps yours is similar? But also I have separately been to see the Ed psych at the council, ours run a drop in service once a month. Perhaps yours does similar? Have a google or there might be a number to ring directly. It was quite informal, I chatted through some issues with them (without my son being there).