To tell me about your teenage daughter being diagnosed as autistic

[JubileeTrifle]

I’m unsure if DD is autistic and I would have always said she wasn’t but things have changed in the last few years:
Shes suffering from anxiety and I think depression, struggling to go to school.
Has always been fussy with food but getting worse.
Now become very sensitive to noise. Not previously a big issue pre lockdown but now finds loud noises a big issue. Scared of them showing videos in school.
Quite routine driven. Obsessed with one of her teddies.
She does have friends. Quite happy to spend time on her own though. Worries about the friendships constantly.
She has always been quiet and reserved. Been a struggle to get her to join in things.
Post lockdown has developed extreme attachment issues to me.

DH always comments is like she regressed in the last few years.
she is seeing CAHMS for the anxiety and it has not helped at all. Not their fault but it’s just not for her. They are passing her onto someone more senior for further treatment.
They did suggest I contact a local autism charity about the food issues for advice.

Feeling confused about the whole thing. One of the neighbours daughter is autistic, I can see the more classic presentations in her though. I’m interested in the less obvious signs.

Bumping for traffic as CAHMS agree that she needs assessing

My dd was diagnosed at 11, but her autism wasn't really a big issue then. It got much worse around 13-14 (although apparently it doesn't get 'worse', just more apparent) and also developed OCD and recently got A dyspraxia diagnosis. I went from one of those 'autism is not a disability' parents to now feeling that it very much disables my dd. She's considered high functioning but needs assistance in all areas and I'm very worried about her future.

Like your DH I very much saw a regression in my dd's development too. Which according to the experts doesn't happen but it very much has in my dd.

Thanks for replying. It all seems to have come to ahead in the last few months from nowhere so I’m a bit side swiped.
I would say sometimes it’s like having a toddler again, she’s very clingy and cuddly with me.
now I’m worried the process is starting so late in the school term and it might not get done in then next week.

Hi - I think you are right about the end of term impacting things. If it helps this is my teenage daughter’s timeline: approached GP August 2021 and had face to face appt; GP happy to refer and collected info from school and referral submitted about Nov 2021. NHS accepted referral January 2022 and we were told it would be a 3yr wait…We were fortunate to able to look at private assessments and that was done this week.

One less obvious sign is the type of stimming (self soothing repetitive actions).
Can be hair twirling/sucking, nail biting, picking at skin (on ends of fingers, or maybe at blemishes or spots on the skin), hand flapping, spinning, running/pacing (DD does this between tasks often), rubbing a certain spot of skin or a favourite item...and there's many more.

Dont overlook adhd.
It goes hand in hand with overly sensitive to noises food. And a lot more of what you just explained

Innatentive adhd is overlooked by girls

My advice would be to push for a diagnosis asap.

My daughter had various issues with school/friendships all the way through. Also struggled horribly with any injustice she felt she or others suffered. Had referral to cahms at about 10 when the subject of asd came up. At that stage I saw adamant it was out of the question as she was so different from my asd son.

Fast forward 7 years where we have both been more and more certain her difficulties are due to asd and we are unable to get her assessed despite a gp’s referral after completing the nhs questionnaire - being told in a letter from the relevant department - you may have asd however your difficulties are not sufficient to warrant an assessment.

I feel like I failed my daughter all those years ago. All she wants is to understand why she is the way she is and come to terms with that. I have told her to see the nhs stance as testament to how far she has come and how well she is doing but if I could go back and change my initial response all those years ago I would.

I’m autistic. And I was similar to what you described in your OP.

I think it was knowing that routines were going to fall apart in the holidays, I wouldn’t see my friends as much and I often worried about being lonely. Being hot and sweaty gave me sensory overload and I worried endlessly about it.

I also experienced depression at this age.

Looking back, I wish my parents knew. I wish my routine was set in stone before the holidays started and having days out marked on the calendar would have helped. Masking and maintaining friendships is a really tiresome job. So lots of downtime and rest was required.

If I didn’t rest, I’d get overwhelmed - just like a baby who missed naps.

Stimming calmed me down. I took things extremely literally (I’m a little less literal now)

I don’t know what I’m trying to say really. But if you ever want to PM me - you’re welcome to x

I often found and still do - that a new “special interest” calms my anxiety and fears.

So if she’s remotely interested in anything, see if you can encourage more. Reading, DIY, a trip. Anything!

An autistic girls “special interest” is often the secret weapon to mental well-being.

There were at times, when my
boyfriend was my special interest - around aged 16-17 😆

i think she is depressed. She has some medical stuff (that’s being sorted) that probably doesn’t help how she is feeling.
The downtime thing is a big thing for her as is her hobby.
she did so well and liked school so much last year it’s terrible to see it go so wrong.