Those of you that are ASD adults, did any of you attend a specialist school?

[Laughinggoat]

my DS attends a specialist provision. He is fully verbal, can work a washing machine (his older NT siblings can’t) cooks simple dishes. He is 13

he does have acute anxiety, is incredibly vulnerable and is having accidents quite frequently.

obviously as a parent I worry when I am no longer around. Did you overcome a lot of challenges and are now fully independent? Part of me wants to push him to become more independent and another part of me is probably wrongly mothering him too much.

it was really to gain some insight from adults on what helped or could have helped you more? How do you raise your kids knowing you experienced their difficulties etc..? How can I do my best for him? Thanks

I did.

I've name changed for this, even though it's probably really obvious what my other username is for those that read this board often, as its a unique set of circumstances I've talked about before on here.
but its a lot of my life and embarrassing so putting that slight gap up.

Good/independent parts of my life, I have (also autisticl) husband and we live independently. I do cook for myself, but cant always eat it, but I find things like huel are very helpful when you're in that mental spot of not being able to eat because of textures, smells etc, so maybe investigate a safe meal or a safe milksahek type replacement that can be a, when you cant eat anything else, you can have this type thing.

Bad/not independent parts, I don't have a job and I can't apply for PIP etc as it just overwhelms me so much, all the forms etc, if dh leaves me tomorrow I will probably legitimately end up living in a tent. I don't organise any of the bills, again tent life probably awaits if I ever have to deal with this on my own, but we are working on that lately and I plan to be in charge of one or two bills and then scale up.

I debated which section to put this under, but I have no friends, but I am ok with that, I find the outside world very intimidating and stressful, accepting that I do not function at all well in it and kind of giving up trying on that, has helped my mental health no end.
People will say oh but you need friends, but if it was causing me so much stress, I don't think I do.
I have online people I talk to and fulfilling hobbies I do on my own.

Things to maybe work on as he gets older.

This will be when he's older, but if possible and if he is able try and get him into work experience (if he can) when he is an older teen. For me, it honestly feels I've been a bit left behind job wise and it's a struggle to get a job with such a huge gap on the CV.
There are charities like ambitious about autism and others that offer job experience for young autistic people. and apparently, companies like Morrisons (I don't have one locally so can't vouch for this) are great at helping people with additional needs or neurodiversity into roles.

Things to teach when older or now, how to manage things online, maybe show him how to do an online shop and get him to put his favourite things in the basket, online shopping, online everything tbh, helps me so much, I can't do phone calls and I sometimes don't go into public for months, I would legitimately rather go without food sometimes, then have to go into a shop, so being able to online order is a lifesaver, so being able to do that may be something important to consider for when he is older, knowing he can get food, medicine etc all online when he is perhaps at his lowest and can't cope with the outside world.

This is a tough one and I haven't managed to achieve this yet, being able to advocate for yourself in a medical setting.
When you are an adult with autism in a healthcare situation, you will often be dismissed as anxious or perhaps not be able to explain your issues correctly, there are lots of reports of autistic people getting substandard care or dismissed*. I have been in that boat, I was dismissed as an anxious crazy person basically when I was actually seriously dangerously ill.
Anything you can do to help that over the next few years, will probably stand him in good stead....but I don't have any advice of how to achieve that!

*" Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%)." bmjopen.bmj.com/content/12/2/e056904

The ability to say no and it not eat you up, this is something I have only really started to do properly in the past couple of years, learning to embrace the mumsnet mantra of no is a complete sentence is probably a great thing to teach.
It's ok to say no to something, if its going to eat up your mental health for weeks and saying no to protect that is something you shouldn't feel guilty about, easier said then done though!

I've waffled a lot and I'm not sure all of it makes sense. But I hope it helps/gives you some hope for the future. Anyone looking in at my life would probably be like what the fuck. But I am happy for the most part even though my life is not a normal one.

(Also name changed for this, which is silly because we all know that this should carry no stigma. I suppose the self-stigma runs deep)

I didn't go to a specialist school, but it was definitely talked about when they thought I was out of earshot. And I agree with everything the PP has said.

The thing which struck me too, when you said your DS has "accidents", do you mean toileting accidents? I wet and soiled myself until my early teens, and what would have helped a lot would have been some more gentle understanding and support to use the toilet independently and to clean myself up, a recognition that I couldn't help it and wasn't doing it to be antisocial.

Theres a massive bunch (around 450+) of us autistic drs that are v much trying to change that (glad you found an article written by some of us!)

I'm pretty independent but struggle with overload and exhaustion with masking at work. No special schools but bullied like mad so went through 5 schools

Erm tips. Let him learn at his own pace, let him have alone time, don't take it personally, don't let the diagnosis put limits on him (I've recently done a school talk on breaking glass ceilings - it doesn't necc need to limit you), teach him everything as you would any other child, let him do it his way if he prefers. Support him, advocate for and with him. Raise his confidence as best you can. Show him how many amazing people there are out there with autism so that when it gets him down he can have hope

Thank you so much for your replies. I appreciate your honesty.

I do need to rethink how I parent. I know he is capable of so much more than he is doing and it is entirely my fault for smothering him that he isn’t.

Our life got easier when we accepted that our lives would be different than most. I think however I have gone to the extreme and used autism as an excuse. I myself am only just realising I am ADHD and will go for assessment. This is one of my barriers as I am not consistent enough to teach my DC.

thank you again, I really appreciate it

Can you get him involved in a buddy mentoring scheme through a charity? I've been looking after asd/adhd kids since before I knew I was and thinks it helps them a lot to have an external person to do activities meet with - the 2 charities I've done it through is the children's society and ymca

It's a difficult balance really,but try to let him stand on his own feet (I was v much left to my own devices, my mum def has it too but dont think she realises, I was diagnosed at 28 after 4y as a dr. We are really resilient and part of the strengths of the condition is finding answers outside of the box that others tend to bypass

I don't envy parents I'm not sure I could manage it full time hence for now love anaesthetists for children's lists and volunteering with various charities. The school should have a sen you could approach for advice specific to them x