Support thread for parents of young adults with autism

[Waterfaller]

Prompted by the Chat thread in which many of us are in the same boat! It can be a lonely/tough journey so here for solidarity and understanding.

I’ll pop back to introduce myself properly!

I think you may need to be quite firm with her once and close that down. This is so difficult isn’t it 😢

Does anyone find people say things along the lines of things need to change etc but then not be able to say what exactly that looks like?

Oh definitely
Like we have had so many professionals in our home ( that I had no choice about ) like so so many from so many different organisations..all to do with education and CAMHs for both boys
And they all come in so positive,
giving of the big I am ..
that things need to change
,that they will be the person to make a difference
.that they will engage with my child ,
that they know best ,
that what the last person did was wrong
and they will do better ,change things ,get things on an even keel..
Every single time they left with tail between their legs
They changed nothing..and quite often they made things very much worse

She's not an easy person to talk to
When she was small ,if I knew then what I know now ,about autism and ADHD ,I would of had her assessed.
But because she was ok ISH at school ,I assumed everything was in reaction to her younger brother's behaviours
Now I know better ,but it's obviously to late for me to do anything about it

Autism can be difficult to detect, especially in girls or young adults who mask their struggles or also have depression and anxiety. A specialist ASD assessment could help identify what is really happening and point her towards support that fits her needs, rather than another generic approach.

@EmmaCollinWrites thanks so much for your response. She has been assessed and has a formal ASD diagnosis. She has recently started transitioning so there is that in the mix.

I’m feeling quite sad today, just missing my younger, happier DS (he was always quirky but seemed to cope with life until about 15-16 then he just shut down more and more). Now he will only connect/communicate on his own terms, hardly talks to us (he manages ok at work but I guess is exhausted by masking by the time he gets home). DH in particular finds it really hard, they used to have so much fun together :(

@Seaitoverthere is counselling with a counsellor or a psychologist? If the former I wonder if a psychologist might be worth a try. We had so much difficulty getting a psychiatrist for DS and it was impossible to find anyone with availablity who also knew much about autism. He was a child which of course might have been a lot of the problem. But psychiatry for DS mainly meant antidepressants, with a bit of EMDR (which was fantastically useful) for specific phobia. I wonder if a psychologist who's specialised in autism might be easier to find, and more help especially if meds have not been effective. Of course you may already have one for the counselling.

I feel so much MH support strategies & techniques are based firmly on a neurotypical model. If you struggle with interoception or find self expression difficult, these can be huge barriers. We tried NHS CBT for anxiety with DS and it really felt like expecting a wheelchair user to do stair climbing therapy. I also felt psychiatry kind of talked a different language to autism - it has a different set of models underpinning it and when you describe things in the way we are used to with autism - overwhelm, demand - that sort of had to be translated from our model to their model, sometimes with limited success.

Anyway this is just our limited experience when panicking with a very unwell, burned out 15 year old. I hope there are autism-savvy psychiatrists out there for adults and you can make some headway soon.

This all sounds so lonely.

@Gringods counselling is a counsellor rather than a psychologist, maybe a switch would be sensible but I think she wants to try another psychiatrist .

I just feel it is really weird that she can wake up one morning after several weeks of severe depression and feel better. It all seems to be in cycles, she can feel herself getting “weird” and then it starts. This is actually massive progress to have this insight as didn’t before.

Really she could do with PIP. She’s had Universal credit since the start of the year . I think we have spent about 10k so far. Sold some gold jewellery I inherited to pay for next psychiatrist. We are ok but every penny going on mortgage currently as 60 starting to loom and I think DH’s health is going downhill and I can’t work due to a chronic condition. The NHS have been crap for DD though great for me after I had to see 2 private consultants to get the correct diagnosis.

We had a lot of issues when my ds was 15 ..it was all in response to not coping at his special school..it was a relief when they expelled him .
We had CAMHS visiting weekly and they said if he didn't improve they were going to section him and diagnose schizophrenia
Worst time of my life ..and his to I expect.
Anyway.
I removed all demands ..every single demand on him was gone ,we showered him with love ,and removed every person the LEA were sending to the home and causing him Mega stress.
Slowly he improved
He didn't have education for about a year , because I stopped it to concentrate on his mental health
When I allowed education in the home again,it was a different team
He now has GCSEs.Alevels in maths chemistry and biology B,B,C ,and he's a qualified accountant..
But medically signed of work permanently...
But you can't have everything,

Any top tips for moving our young people towards independence? Is it just a matter of building skills slowly?

Hello, may I join please? LO was diagnosed with ASD recently and is 14. We’ve had a very difficult year at school. LO is off for the summer now and I’m trying my best to figure out how to make things better before school starts again.
My other goal for the summer is to try and help LO become more independent - they are very reluctant to do anything without me or DH (crossing roads etc). I’m feeling so exhausted from this last year.