Please talk to me about your PDA-er.

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My Dd(5) has a number of PDA traits, and I have suspected that she has PDA/ASD for a long time. I’ve recently read the Panda has PDA and the family experience of PDA and everything in them is ringing true.

I am struggling more and more with it, and am not coping. I’m not coping at all. Just getting her hair brushed, teeth brushed and clothes on is taking all the patience and strength I have.

I’ve heard that getting diagnosis is regional and that PDA isn’t recognised in all areas of the country. Why is this? And what does that mean diagnosis wise? I feel so panicked and helpless and lost. Can anyone help?

I don’t have a DC with PDA, but can answer the questions about diagnosis.

PDA isn’t diagnosed as a separate diagnosis in all areas because it isn’t a stand alone diagnosis in the DSM-5 or ICD-11 it is encompassed under ASD. DC are diagnosed with ASD. Sometimes the report will state demand avoidance traits.

Thank you so much @Thatsnotmycar . I would be thrilled with any form of diagnosis if I’m honest. I’m so, so tired of being blamed for her traits and behaviours (mainly by her father and myself in my tired moments), and desperately want strategies to help me help her. I’m really, really struggling. I feel like I’m making it all up and going mad xxx

Have you looked at the PDA society’s resources? And if DD has VCB Yvonne Newbold’s resources.

I did suspect my DD has PDA but they can only refer for an autism diagnosis. I'm still waiting for this and some of the PDA resources work on her, but I also heard they won't respond to positive behaviour management and DD has been a lot better since school started a sticker chart and rewards for a good day.
We had some success with hair by letting her do it herself ( yes it looks awful but at least it's brushed) and teeth by changing to toothpaste back to kids one as apparently the texture was all wrong.

Can your husband help so you can get out by yourself?

I have a diagnosed pda child it's quite a killer on every day life.

Tooth brush - have you tried a regular one? He hated the electric one due to noise.

Hair - can you have a shorter cut? Less brushing.

Does your child have issues with the toothpaste flavour? Yes he brushes his teeth twice a day but it's not long enough but it's better than nothing.

Clothes - he wear pjs on a w/e and sometimes go out in joggers and a pj top - but who cares.

Noise cancelling head phones are good.

Soft cotton t shirts are good / joggers

If your child is struggling at school start applying for an EHCP as a parent as it takes forever

Yes we don't live a "normal" life. We often divide the family up. We don't go out to restaurants now as a family - it's crap.

We don't have friends over and I don't arrange to meet people as we don't get out. I just go with the flow.

He's in school - so I let him chill out on a w/e .... to relax and gain energy for the week.

We bake a lot at home as he likes to stay in on a w/e ....

It's shit on the parents - I've turned fat and drink lots due to the stress of it all. So you aren't alone.

Funny enough I said to my husband today 20 mins ago we need w/e help 😂😂

Which county you in? I can share my resources if you are by me - it's a what's app group with mums with pda kids.

Good luck! X

@Ilovechoc12 have you had social care assessment?

If you haven’t already might want to try unflavoured &/or non foaming toothpaste.

No I haven't - prob as I've been fighting for 2 years for tribunal and still bloody flighting with the LA after tribunal so doing complaints etc.

This is one of the reasons hope this link works ..... and not a family picture of my children in some description 😂😂😂😂

https://www.itv.com/news/2022-11-16/mum-pleads-for-help-with-autistic-son-10-in-broken-system?utmmedium=Social&utmmsource=Facebook&fbclid=IwAR1FG97e-iHBr9WQeDayjZ5J3023HWm0cVAp-YBlQyvwGTyTdJoMohh7tE#Echobox=1668633182

I know maybe it's a one off but I'm not sure I can risk it ..... as you always hear the nightmare stories. Thank you x

If you have appealed to SENDIST you can ask them to look at social care provision too.

DS1&3 receive DPs from social care for PAs.