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

There is unlikely to be any useful support from camhs tbh. He does need to know at his age that he has a diagnosis and the school need to know in order to provide support. Could you ask camhs for help in explaining the diagnosis to your ds? I really don't think you can keep this from him. If you don't declare this diagnosis or talk to your ds about it there seems to be little point in the diagnosis. The diagnosis can open doors to support.

@cansu thank you for responding. Yes I fear as much with CAHMS although I did have a very useful session a few years ago with a very nice and understanding CAHMS lady (who first identified that my DS may be autistic) and she did say to contact her if I need any further support, so may be worth a try and she is local.
We know we need to tell DS about his diagnosis but feel sick and he will completely kick off. May let the news settle in for us for a bit and then find a suitable time.
Feeling very worried and upset tonight, upset that he may not have the future we imagined for him when he was little.

My DS - 16 has just been diagnosed with ASD. It’s so emotional. Feel free to send me a Pm.
My son is so lovely. But also very anti social! He has three friends at school. Really couldn’t care about any of the other kids. It’s almost as if they don’t exist.

@Fluffycloudsblusky - thank you, am just getting my other children ready for bed and then will msg you.I was expecting to feel relieved that we finally have an answer but am instead just blubbing and feeling like a failure. I know it’s not about me though!

Take a deep breath OP. It will be fine.

It's a strange, lonely place to be when they are first diagnosed. It explains some things but it makes you worry more about others, and about the future. It's early days, things will settle.

I agree that DS needs to know. Really, he should have been told what the assessment was for in advance. Simply to give him time to think about it.

DD was diagnosed at 13yo. She was in compete denial. She doesn't want to be 'special' in any way either. The first year was horrid, but she started coming to terms with it, and it helps her to be able to explain certain behaviour to herself.

Unfortunately agree that CAMHS won't be too much help. School on the other hand may not be able to offer much but they absolutely need to know. They're able to offer reasonable adjustments and it can only help for your DS's teachers to be aware.

For now, I'd concentrate on telling DS and helping him accept it. And on you, to get your head round it and process what it all means for you all.
Look after yourselves first and foremost, and take things slowly.

We're currently on the pathway to having ds diagnosed with asd. He's going in to yr9. Honestly, I wish I'd done it earlier, but it only really seemed to affect him once he hit secondary/ puberty. And I was probably guilty of thinking that if he was doing OK academically, he was doing pretty much OK. And he was safe in primary, because everyone knew him.

I've told him I suspect asd, because I think a lot of his odd behavior stems from anxiety at being different from other kids and not 'getting' how to be like them. I want him to know that there are reasons. I also want access to help I don't feel equipped to give, as he won't open up to us, but he might to professionals.

It takes time to accept these things. He may well deny it and be angry but this will probably ease in time. Slightly different as there is no specific diagnosis but I teach a child with some observable additional needs who categorically refuses help from TA or anything he perceives as different from others. We plod on trying to support him as subtly as possible. Forcing things just results in point blank refusal and digging in on his part. I think he may well change his mind as he gets older. I think explaining the diagnosis and informing school is the first step. He may not accept everything but at least you will have tried.

Just remember, nothing has changed. You’re still walking the same path. All the stuff you’ve been dealing with for the past 15 years has resulted in the diagnosis you’ve received today. Your son is still the same child.

What you both need to do is work on your own internalised ableism. You need to sack off any notion of your son not being a “perfect, fully functioning” kid. He needs to be taught that a diagnosis of autism doesn’t have to be negative OR positive… just be neutral about it.

My daughter was diagnosed at 9 and it’s helped her immensely to understand who she is and why she’s a bit different. I can’t imagine how much she’d be struggling with her mental health if she believed herself to be neurotypical.

I have no advice on next steps, but just to say I have a 3 year old DS who is currently non-verbal and is waiting for assessments for autism/ADHD, and I completely identify with your feeling that everyone else's children all appear to be sailing through life in comparison to your own. My son is perfect to me and has so many amazing qualities, but I do worry about his future.

13 year old DD was diagnosed this year, it wasn't a surprise to either if us and in fact was welcome as she thought she was going insane.

Send the report to the SENCO, they will then work with you and your DS to write a one page profile with any adjustments he requires to access the school environment successfully. It will only be the SENCO and their admin staff that see the report, all other staff will only see the one page profile.
Examples of things that can be put in a profile:
Toilet pass to access the toilets during lessons when they are quiet.
2 min early pass to navigate corridors
Time out pass to visit SENCO office and reregulate.
Access to calm room during unstructured time.
Not being cold called during lessons, instead asked a question and given time to think.
Quiet room for school assessments, and your at an age when access requirements for exams need arranging, extra time due to slower processing, small room, etc
Choice of seating position often either front or back and away from distractions.

Other help is pretty much non-existent unless you pay for it. DD developed tics and has been referred to have a blood test to make sure its not nutrition deficiency related although I am certain it is stress related.

I have a newly diagnosed 15 yr old too, and although my DD is very positive and accepting of the diagnosis, I have also found myself falling down the rabbit hole of panic/doom about the future. I really feel for you and I understand. I think we have to give ourselves time, allow the feelings to happen.

Tbh…. In our case not a lot happened next.
it was a bit different as 15yo dd was relieved about the diagnosis and it helped her be kinder to herself and understand herself more.

I let school know, but she hasn’t really needed any specific support thus far.

I shared it with her counsellor when we sought counselling for her about an issue, as it can affect how people respond to counselling so it was helpful for the counsellor to have a copy of the report.

that’s about it really.
it doesn’t change who he is.

I think I’d already thought about and come to terms with the fact that it was more than just a ‘tricky teenage phase’ and meant that there would be certain things she’d always struggle with throughout her life.
But she is doing so much better than she was and I know she’ll be fine.

The main thing that changed for us was actually my attitude and parenting style. I know she has to have downtime, her noise cancelling headphones are pretty much glued to her head after school and I need to hive her that she isn't just being rude.
She doesn't see' household tasks but will do them (relatively) happily when asked.
Reading between the lines and small talk is just not her thing, so we have deeper conversations, she still talks at me rather than too me but it's a start.

I work for an employer that is very inclusive and actively recruits Neurodivergent individuals as do many government agencies like MI6 and GCHQ. So I am more positive about DDs future than I would be working for somewhere that wasn't so inclusive.

Thank you everyone for your wisdom, still a bit of a mess but have got the little ones down to bed now so can decompress. @Jellycats4life thank you for pointing out that nothing has changed, I need to hold on to the fact that he is still the same lovely kind and caring boy, always the first to ask me if I am okay when I’m feeling fed up, often says ‘love you mum’ in gruff teenage boy voice.
The autism traits really only became obvious during puberty and he was a late developer so really over the last year. We’ve had a difficult year this year with him never doing homework, failing his progress exams, making bad decisions, and having fits of anger.
I also have the panic for his future, but think I need to focus on the here and now, telling him about his diagnosis, working with the school, getting him through his GCSEs and keeping him alive and mainly happy.
Its so hard being a parent sometimes.

It's dh I need to change, really. I've suspected asd for a while and have been using that to think about why ds behaves the way he does, whereas dh thinks he does things on purpose:"he's destroyed his headphones again!"
Well, yes, but it's because he had an overwhelming desire to chew the plasticky spongey headphones or the stuff around the cables and got carried away. He now hates himself for what he's just done but also feels ashamed, cos his dad's having a go. Which will now prompt him to some other weird behaviour, to release his emotions.

Dh also needs to acknowledge that we cannot 'fix' ds, and that HE needs to modify his approach, the way I have. I've always assumed ds has inherited from my family, but I do wonder whether it's a line from dh. Unless it's just dh's age that makes him so rigid.

Look up Dr Naomi Fisher, she is fantastic. She's published books and does webinars.

Nothing changed. You just get a piece of paper confirming what you already know. There is generally no extra help, you have to seek everything yourself and you've probably already found the things that work already. I'm more tolerant now with DD's 'moods' and I'm no longer bothered what people think when we're out but that's it really.

My 9yo DS was diagnosed 3.5 years ago, aged 5. At the time it felt like the world was ending, and DH took it very badly. We were somewhat blindsided by diagnosis because it came out of a side route through speech therapy. In fact, I remember posting on here.

I have to say, it’s the best thing that ever happened to us. It allows us to advocate for him in all sorts of scenarios, and it’s sort of like a key to ensuring that all people in his life have to do the best by him, and so many people are so willing to help - from school, to scouts, to holiday clubs.

he’s still the same person he’s always been, but we all have a better understanding of him now. And actually I have a better understanding of myself as a result.

take the time to grieve as a family, for the future you thought you had planned (which may or may not be difficult) and the help he hasn’t got until now. But then move on because knowing about this will only make life better.

Adding to the messages above to say this is another household going through the same thing. DS (young teen) is also in the middle of assessments for ADHD and ASD. I think he'll get a diagnosis of the latter, possibly both. He also started to present much more clearly with puberty. I have found the whole thing incredibly stressful but someone who has been through the same this week suggested buying a 'diagnosis cake' whatever the outcome, to celebrate the process of finding out more about himself. That seems like a good plan to me, a positive spin. I am worried about his future but agree the world is becoming much more aware of neurodiversity and supportive...

Perhaps you could speak to him about some interesting neurodiverse individuals? Loads to choose from!

Not doing homework at home is super common because the compartmentalise and home is for home things and not school work. DD takes herself to the local library instead as that's a workspace or does it at school.

He won’t touch any of his school books at home (which makes doing homework kinda hard🙈) and also strips off all his uniform every day and has a long shower (to wash away school I think).

@blessedarethequichemakers you are right, my workplace is very hot on ND and always lots of articles on our intranet and a ND support group was set up. Hopefully we are now much more understanding of ND than, say, 10 years ago. I think it’s just still very hard to be in a large state school with ND, it can still be a ruthless place if you feel different. I try to explain to him that once you leave school, it’s a lot different in the big wide world.

@Vomitcomet a benefit of having sought the diagnosis is that it has made my DH readdress how he deals with DS. He used to get very cross with him, and they often argued, DS and DH are very different. He has been much more reflective and kinder to my DS since we went through the assessment and seems to understand that he has to deal with DS differently.