If you were diagnosed with ASD as a teen and you felt your parents helped as you grew up, what did they do?

[Anselve]

DD13 has just been diagnosed with ASD. She was able to mask it very successfully at primary school - so much so that we had no idea - but fell apart with the move to secondary school and puberty.

She’s much happier now that she knows why she feels the way she does, but is only attending school about 50% of the time.

We think she’s great - fierce and funny, kind and interesting - and will do whatever it takes to reduce her anxiety and make things easier. It feels like if we can get this bit right and she can get through adolescence with her self-esteem and confidence intact, then she’ll be ok.

If you can relate to this, what were the things your family did that helped?

I wasn't diagnosed as a child, but have had it mentioned by a consultant in later life. Of course everyone is different. For me, it'dve been helpful if my parents had taught me more of what to do and not do socially etc, as I didn't pick it up by osmosis as some do, I needed more verbal direction as to how to act socially.

The more she's able to perform socially, the more it'll raise her confidence.

I bet it helped her a lot to get a diagnosis which explained things.

Best wishes xxxxx

Yes it did. It was also quite a window into what she was actually doing socially for us. I would have said she had no problems in social situations, but what she said was that she can do it (make eye contact, make small talk) but she hates it.

I was diagnosed at 42. Spent my entire childhood feeling bad, wrong and different. If you can help her feel accepted and completed fine as she is then you're doing well.

Help her to understand that meltdowns, shut downs and overwhelms aren't her fault or her being stupid or weak but just her nervous system's way of coping.

I think if I'd have had that then my self esteem would have been much better.

At the same time, don't let a diagnosis hold her back. She can still lead a successful and independent life.

Thank you bitheby. That’s how I feel too - that she can be happy and independent.

Our struggle is making the right/helpful choices when she finds it hard to articulate the problem. I feel like a detective looking for patterns in the problems and then working out a solution she can cope with.

For example, she has been refusing school on days she has languages because she can’t understand why she needs to learn a language. This came out in the assessment. She’s refusing school so much, we’d put it down to the whole busy environment rather than specific lessons.

Watching with interest as I have a recently diagnosed teen ds, and a teen dd about whom I have my suspicions.

Since the diagnosis, one change I have made has been about picking my battles. What would reduce their stress? What do they need to learn, and do they need to learn it NOW?

The organisation and self-discipline of school day mornings was stressing ds so much that he could not choose what to have for breakfast. He had started skipping breakfast instead. So, even though ds 'should' be able to sort out his own breakfast, I've gone back to preparing it on school days.

Yes skipping breakfast is an issue. But who can eat when their stomach is a knot of anxiety?

DD always seemed old for her age and now she seems younger than her peers. She was always organised with school when she was younger - because she had enough energy and brain space to be so - and now I check her bag and help her sort her books otherwise she’d carry everything with her out of anxiety.

At the same time, she doesn’t want me to. I’m trying to step in when needed and also step back when that’s needed. Finding the balance hard.