DS just received ASD diagnosis

[Londondreamer]

Hi all,

My 16 year old son was recently assessed for Autism and on Friday we had the feed back call confirming a positive diagnosis. We will receive the full written report in a few weeks apparently.

This follows a couple of years of mental health issues, dropping out of school and college and endless phone calls trying to get help for him as he became more anxious and depressed.

I'm wasn't really surprised by the diagnosis, looking back at the issues he has had and he doesn't seem to be upset by it but we are now left in a sort of limbo, no further info was given or any advice as to how we navigate going forward.

I wondered if anyone could recommended any books or websites which could help, for both us as parents and also for him, to understand more what Autism is and offer any advice as to moving forward?

He is in many ways, your usual teenager, wanting to be independent and be with friends, whilst at the same time, becoming so stressed and anxious about life that he just closes down and isolates himself.

I just want to find something he could look at, to help him understand himself a little more and see that, ok, he may be a little different from other people but he is still a great kid, with so many lovely qualities and hopefully, give him a little self esteem and confidence back.

We'd be really grateful for any suggestions of anything you have found helpful.

Thank in advance x

I'd be interested too. I've heard that there's usually no support after diagnosis, shocking how underfunded the services are isn't it?

DD has had her triage appointment and we've been told that a diagnosis shouldn't come as a shock.

I don’t have much advice other than to say lots of people misguidedly told us it would be good for our DS to get diagnosed as he “would get the help he needs”. I may have hoped for that naively myself but by the time he was diagnosed, realised there is none really post diagnosis.

He has just turned 14 and what has helped him is having a diagnosis to understand himself- he’s not happy with it but it does help. We can also put more pressure on school to help with whatever little support there is. For example DS school brings in a specialist post diagnosis from a local SN school to work with DS for a defined period.

Diagnosis helped us as parents feel less guilty about our parenting and helped us change our parenting style to support him more.

I do read as much as I can online, books etc and I also applied for DLA which I didn’t even think we were entitled to and just been awarded higher rate care until he is 16 which will help provide for drama, etc outside of school. We are in Wales so Autism Wales has been useful and we were able to access a parenting course via the LA run by Barnardos which was….ok. Had to track all this down myself and realise we are in the privileged position of being articulate, m/c parents - don’t know how many people other manage if they are dealing with other issues themselves.

It’s v hard for DS and he doesn’t want to let many people know but it does help us as a family understand his behaviour and his extra vulnerability and try and smooth the paths ahead as much as we can. I hope this becomes helpful for yours in the future.

This is a really timely thread. We are going through a diagnosis with DD16 and debating whether to get DS12 referred. He has more classic signs than DD and struggled a lot when he was younger but is now doing ok at secondary school. It’s so sad there is no support after diagnosis. We’ve paid for counselling for DD via CASS which was really helpful. I don’t think DS would engage though. I think you can access a variety of support through CASS who are an ASD charity so might be worth contacting them.

Thanks for all your responses, it's so helpful when it feels like a very lonely road we're on.

My son is still resistant to speaking about his diagnosis but I've been researching as much as I can and try to slip the odd thing in now and again, to see if I can get him thinking about things.
I have been told he is on a waiting list for counselling support with CASS but have been warned it may be a long wait. To be honest, at the moment I don't think he would engage, so that may be a good thing. Hopefully, by the time an appointment becomes available, he may be more open to it.
As others have said, I'm not sure what I really expected after diagnosis but we have been just left to it and I'm having to try to find as much information as I can on my own. One good thing it has done, It's made me take a step back and look at the way we parented and I'm more understanding as to the reasons he behaves as he does, I'm more patient and less stressed, so it has helped me but hasn't done much for him yet.

Because of the trauma he had at school, he is not interested it going into any other education environment and wants to get a job but as he has no real qualifications, I'm not sure how that's going to happen. I was told by CASS at the time of diagnosis, that they could advise on training and careers but as I said, there is a waiting list and I cant seem to find anywhere to get advice on that in the mean time. There may be private services available but at the moment, that isn't an option unfortunately.

So, for now, I'm just trying to find help by myself, I'm worried because he is just at home doing nothing. I hope to find somewhere that can help point us in the right direction to make plans for his future but it is hard.