Feeling emotional, DS diagnosed with autism today, what next?

[Worriedmun]

DS is 15 and had an autism assessment a few weeks ago. We had a call today (a bank holiday!) from the assessor who was instructed by CAHMS. He confirmed that DS meets the criteria for autism and also has traits of AHHD which he will be assessed for.
Although I was expecting this outcome, I feel very emotional this evening and worried about my DSs future and also beating myself up that we didn’t click earlier that something was different with him compared to his siblings and friends. I’m having to hide away from my other DC as keep crying, luckily my DS is away camping so we have some time to digest this news whilst he is away.
The assessor is going to email through a written report and that’s where their involvement apparently ends.
Not clear what our next steps should be, we are out of our depth.
The problem is that he is adamant that he is normal and not ‘special’ (his words, I apologise). We didn’t tell him that his assessment was for autism as he would not have attended in a million years, we said that it was for us to be better parents and help him when he has difficulties.
i wonder whether we speak to the school as he did terribly at school last year and it’s his GCSE year this year and will need some support - if he accepts it.
Do we go back to CAHMS and ask for support? And what support?
It feels a very lonely place to be and feels like the whole world has perfect fully functioning children, although I know really that isn’t true. It would be hugely helpful to hear any wisdom from those parents who have been through this.
many thanks in advance

Good news, he’s just come downstairs, making himself a hot chocolate and asked if we can watch Virgin River (it’s something we do together when DH has gone to bed).

And that's helpful to the OP how?

Hi OP, have been through this with a younger teen. PPs are right: so much of this is now working with school to reduce environmental stressors, and ensuring adults in his life are behaving with understanding and compassion.

The tricky thing with an adolescent diagnosis, is that it can profoundly disrupt a young person's sense of self, at a time when social identity is pretty fraught for most young people. And let's be truthful, whilst the narrative of neurodiverse difference is now used in many institutions, their actual practice is often still deficit-based. The process of securing support can feel very negative to young people, who need to be included given their developing capacity for decision-making, but who find it predictably humiliating and undermining to have to keep on documenting all the things they struggle with. I don't know what the answer is, but I wish services were more careful with our kids' self-esteem and confidence.

The general challenge is obviously that everyone's autism is unique to them, and if you need to support your son by advocating for him at school, you need to quickly develop a sufficiently nuanced understanding of his autism, and link this to concrete ideas as to how any related needs could be supported, in a way which HE feels would be of positive benefit. Depressingly many schools/LAs will do/suggest very little, so please don't underestimate the challenge or lead time to getting even small adjustments or provisions actually put in place.

The things that have really helped us with this have been to read a lot, especially autistic people's writing about autism, and whilst expensive, to get a detailed assessment undertaken very sensitively by an independent EP, which DC was able to comfortably engage with, and which has unlocked a very much more detailed understanding of DC.

If you want to take a deeper dive into neurodiversity there are a couple of decent free MOOCs you might want to look at - a really really excellent one on ADHD (including latest evidence/debates on medication) produced by King's College and one on Autism produced by the Univ of Derby. Loads of charities and CCGs have produced online resources for families and young people, but finding teen-appropriate content takes quite a lot of filtering.

Thanks @Castform x

@greyflannel this information is very helpful, thank you for taking the time to write. Lots of think about, will sit down later (busy day) and think about your suggestions.

@Worriedmun Well done on telling DS. Glad you're feeling relived and DS seems OK about it. Onwards and upwards!
In future I would include him in any conversations/decisions about his condition. He's old enough and will help him feel more on control.
He may be open to talk about it or he may need some time to process (could be months of even years). Follow his lead.

@greyflannel , thanks for the suggestion of an EP assessment, and the pointers to further literature. DD's CAMHS report was quite wishy washy and I find it hard to explain her specific triggers/difficulties to school etc when needed. Ir would be good to be able to say, here, read this.

I’ve had a lot of experience with ADHD and ODD in a lot of issues with my daughter schooling.
I’m looking at starting a charity that will help. Mum is like me has after three years of experience of fighting for my daughters rights. I’m pretty clued up on what you need to do to get where you need to be.
I was just wondering if there was a need out there for other parents to get some free support on where to go next when your child is struggling at school and potentially have SEND issues.
Would like to know if this would be a service be useful for the parents going through the same thing?