Looking for support

A few months ago we told the school that we were ‘in crisis’ after an incident at school which resulted in our twin girls and Dad all crying in the car after pick-up). To schools those are magic words that trigger their attention (we have a close family friend who is a SENCO and deputy head). We got a referral to Early Help out of it which has helped with sign posting us to local services - we get 20 weeks support with a family support worker; he goes into school every couple of weeks to support our ASD twin and her long suffering sister too. One of the services he signposted is to was a young carers youth club as somewhere our ASD daughter’s sister could go to have time out from the stress. If you haven’t already accessed Early Help I can recommend trying to access it - it’s not a panacea but from everything that’s offered you might find one or two things that make all the difference to you and your family.

Best wishes x

Thanks for sharing these resources x

Hi nas64614!

I totally sympathise with your plight. It’s a flipping nightmare, right? Every morning is the hope/wish/desire that it’s just going to go ok. But no. Every step of the morning routine is at risk from the dreaded PDA (Pathological Demand Avoidance) Living on your nerves when all you want to do is just get ready and go. So simple yet so hard to achieve.

I have (soon to be) 8 year old non ID  twin girls one of whom is awaiting an ASD assessment. People have no idea what it’s like. The issues are so subtle to describe. You know in your heart they are all connected to a syndrome but most people assume it’s bad behaviour or poor parenting especially when girls are involved because the traits are so nuanced.

Many mornings I am tearing my hair out - all I want to do is brush and plait her hair - a five minute job at most - before I have to get off to work - my stress levels are off the scale at the start of the day then i have a stressful job to cope with while dealing with my own ASD issues (currently on sick leave as I hit the wall - am pre-diagnosis but probably autistic burn out)

When many of the traits are illustrated through non compliance with everyday tasks I find myself on this constant mission to remind myself that it is the condition NOT my own failure as a parent.

It’s Saturday today and we’ve had two major meltdowns we’ve had to talk her down from (not counting the meltdowns avoided through spotting triggers in advance) - one at the swimming pool and one when we’re just trying to have a chilled out Saturday afternoon. There is no let up, you are always having to keep your guard up ready for the next irrational explosion.

I totally get what you are saying. It’s helpful to know I’m not the only parent out here dealing with these challenges.

Thank you for sharing. Please keep taking to us for your own sanity :-)

Thank you so much for taking the time to reply. I really appreciate this very helpful advice. Many thanks x

Hello, I’m not the parent of an autistic child, so I can’t give you first hand advice, but NAS does offer a parent to parent service which you can find here. The NAS helpline can be found here.

I would suggest that you try to join a local group of parents with autistic children. It is always good to talk to other people who have similar experiences and share knowledge. You should be able to find out what groups there are via your local or county council web site.

It may also be a good idea to keep a diary to try and identify what sensory experiences he has problems with. Some people adopt a sensory diet and try to limit incoming information. Things like noise-cancelling headphones can be quite helpful.

This blog is by a mother of an autistic child, she’s been writing it for 6 years now so it may be worth a look. http://flappinessis.com/

I wish you all the best, Graham.