Looking for support

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 :-)

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 :-)