Where can you get help with demand avoidant ASD profile ?

[NosupportforPDA]

My dd has ASD with PDA and ADHD. She is 6. Everything is a nightmare. After diagnosis a few years ago we just got discharged from everything except SALT. We are waiting for an OT appt but the wait is long.

The demand avoidant aspect makes everything impossible. Where can I access help? Apparently CAMHS waiting list is up to 1 year. Is there any other nhs service that we can ask to be seen by?

Every day is just screaming and things that should be quick to do take quadruple the time and we are exhausted.

To add she also has ARFID and food triggers a lot of issues

Feel free to pm me - i have a teen with pda asd adhd (alphabet soup!) And we're doing well now after years of stress x

Thankyou I will do

Start with the PDA society.
https://www.pdasociety.org.uk/

Eliza Fricker (missing the mark) is great, on social media, books.
She also does consultations
https://missingthemark.co.uk/support-and-training-help-advice-for-autism-pda-education-parents-families-schools-teachers

Kristy Forbes is also great
https://www.kristyforbes.com.au/

Casey Ehrlich explains things really well and gives clear guidance . Lots of videos etc for free on social media
https://www.atpeaceparents.com/

Be prepared to turn parenting on it's head and rethink so much of what you thought. It's tough and can be lonely, but embracing a PDA affirming approach genuinely does provide the environment in which a PDAer can thrive. It's about understanding their nervous system and making accommodations for it so their dysregulation becomes tolerable.

I'm the parent of now adult PDAer. When I first came to PDA, there was so little known, but there is now a much better understanding and lots of info.

Good luck, and seek out support through groups of other parents either irl or online

I"d echo pp. There wasnt a huge amount of external help that was quick to access.

I had to relearn parenting and relied on the pda society heavily. Learning what was a demand and how to depersonalise them really helped. As did thinking do we need all these demands . Why are we doing this? I relied a lot on alexa timers and announcements. Any sort of reward was a massive no and even praise was a no. So all the typical advice like catch them being good and praise it was making things worse.

But what I would say is autism with a demand avoidance profile is different than pda, in that once my child was in the right environment, and had anti anxiety meds, OT and Salt had time to work the demand avoidance reduced massively. He manages loads of demands now. So I think it cant have been pathological but a response to anxiety and sensory disregulation. So I think a demand avoidance profile is a bit more hopeful to manage longer term.

The right environment for him was a special school.

@NosupportforPDA I've just sent you a massive pm 😁 no idea of anything is helpful there x

I agree with @Fearfulsaints that PDA is not simply demand avoidance. We all experience that, especially autistics. Its how to accommodate that which differs.
I think Pervasive Drive for Autonomy is a more helpful title. Another factor is needing equity which so hard as a child, especially at school.
My dd is definitely PDA but people are blown away by how she manages that as an adult. I've even been asked if she's "grown out of it" !
The reality is, she's had years of learning about herself and dysregulation. She is practised in things that help keep her regulated. But also, as an adult she has much greater autonomy!

Yes! I sometimes say that my son wasn't very good at being a child, but he finds it much easier as a young adult, because people's expectations are different.

We have a PDA daughter..I agree with PPs, it’s a combo of working with her autistic traits and her PDA traits, what I’ve found actually is her need to have friends, and be sociable. But of course it’s always a full on chill time needed afterwards but she has developed strong friendships of friends who get her. She also has an eagerness to learn, I would say she has a very internalsied profile (perfectionist, anxiety) also I’ve realised that the anxiety will always be there,

we heavily scaffold - she won’t see the ‘dance’ me and her dad do around her - from breakfast in the morning in the front room, to making sure we give her the down time she needs but balance that against her needs. It’s so much going on and it’s exhausting - routines, food, also she’s being tested for ADHD. She also has SM which I think is driven by anxiety.

school see some anxiety, they new when she couldn’t go into school. What I’ve found as well is being open with her not in the emotive moments but other moments like talking to her on a level, like she’s an adult, DH can baby her but she likes that comfort too, she’s regressing at the moment as she’s got a broken arm. But I’ve been astonished by how she has regulated herself, she’s pulled out one of her old teddies, she’s using a weighted blanket, she’s letting me hug her more.

anyway where we were a year ago has changed so much, I find she can take some demands although her capacity for home life after a week of school is hard. Working together seems to be the way forward. But she still struggles with teeth brushing, she can’t or refuses to wipe her own bottom and she’s almost 11. So yeah there is a lot going on!

Definitely.

In fact the early PDA literature from Elizabeth Newsom et al talks specifically about the child perceiving themselves as an adult and my daughter was asked this as part of the assessment. PDAers don't recognise social hierarchies which brings SO much distress and potential conflict.
I think it's really helpful for parents of younger children to hear our positive experiences for our adult dc.

The autonomy thing is very true. One thing we did was sit down and think 'would my child have control over this as an adult' and if tge answer was yes, we'd try give him control (scaffold safely etc) of the scenario.

A lotvof people say when thier an adult they will have to do x,y, z but its not true. Adults pick thier work, how and when to socialise, what to eat to a great extent.

For help and support with ARFID look for any books or advice from Dr Gillian Harris or Dr Liz Shea.
Whilst you are waiting for your OT appt ( is this a sensory specialist as not all OTs are trained) look at The Out of Synch Child has Fun book.