Late ASC diagnosis (13 YO DD) - What now?

[stickygotstuck]

Hello

Just dipping my toe in this SN board.

DD has just been diagnosed with ASC after 2 years on the waiting list for ASD assessment. For context, I'd say that it's not 'immediately obvious' that she is autistic, has no evident learning disabilities, and she masks quite well.

I half expected the diagnosis but I am still digesting it, her father was surprised, and DD herself is not convinced that's what her issue is (although she does agree that there is an issue).

Are there any good resources / groups you'd recommend for people at our stage in the ASC journey? Especially for teens themselves.

Thank you.

I didn't want this post to go unanswered as I know it's hard to adjust. I've seen people recommend The Girl with the Curly Hair website and book on here.

We were lucky in that we were got to attend a workshop locally which ran after diagnosis (precisely to stop people being left with no information). There was a separate one for teens which DD wasn't keen on going to, but when she got there she realised that it was useful to meet others with similar challenges to her. DD also had some specialist counselling in social skills and understanding people (or appearing to) using materials produced by NAS. That was useful.

For DD herself check if there is a local teens youth group, there is in many areas.

Purple Ella, Tania Marshall and Sarah Hendricks are also worth a look.

For you, Scope offer mentoring for parents of newly diagnosed DC.

Thanks so much for replying @Chaotica and @Imitatingdory .

I'm sorry, this dropped off my watched list and assumed no one had answered, it's much appreciated.

Since posting this, I have been reading like mad, including materials by NAS, the Autistic Girls' Society, NASEN, and have done an online course for parents post-diagnosis offered my my Local Authority. A lot of it was quite basic, but it did have many useful sources. I have bought a couple of the Girl with the Curly Hair books. Currently trying to get DD to read the 12-16 visual guide. She's not quite in denial but is avoiding the subject. Early days.

In the meantime, I've informed school and any out-of-school activities, which should help DD feel a little bit more understood.

I meant to ask, about youth groups, are these helpful, in your experience?

We've looked into local groups, but there's nothing suitable in the area. Some are divided by age and she's out of sync. Plus there isn't a lot locally.

I suggested a general one not specific for ASD teens but she's very reluctant, unsurprisingly. Will keep trying.

Rather than youth groups, or specific ASC youth groups, is there anything which your DD enjoys particularly? DD found some things to do in school (mainly prelockdown, but they are starting up again) including helping in the library at school to avoid break and lunchtime with the crowds (there were several children rather like her, so she made friends and felt useful). She also has done some music and drama productions (starting off with one line parts) and that has helped her confidence. The school has several 'escape routes' for children with ASC to do something quiet or focused if it's too much to hang out with friends.

I looked locally for youth groups but there isn't much here either except for the workshop she attended initially.

Some do find ASD teen groups helpful but it depends on the group, how it’s run and the mix of teens attending at the time. If they won’t work for DD, or as well as, I second interest specific groups.

Thank you again!

DD does several after school activities. We made sure she has since she was little, as we could see there was an issue with her social interactions.

She enjoys them, but she does not generally 'connect' with the other children. Just one girl in her sports team (thankfully, but they don't see each other outside training), no one in her music class over the years. We do keep trying other groups, and letting her stay long term so there is more familiarity, but so far it's still difficult. The bottom line is, she feels isolated. Now that she's a teen, she is acutely aware, which leads to low mood 😟.

Sometimes I wonder if all these activities are doing more harm than good, but I dont think letting her be in her room on her own all the time would be beneficial either.

I did suggest an ordinary youth group. She refused (too anxious). l'll suggest it again every so often, see if she changes her mind.