Experience of PDAS?

[MacaroonMama]

Hi All,

I think my niece (age 6) may have Pathological Demand Avoidance Syndrome, an ASD. She has lots of the markers of it, and her behaviour often really upsets and worries her parents/family.

I only heard of PDAS as was talking about her (not gossipy) to a lovely friend who knows a lot about ASD, and this friend mentioned that PDAS sounded like her, and that it is more common in girls.

Has anyone any experience of this? And also, much trickier, do I do anything in terms of mentioning anything? Niece is my DH's sister's daughter. I have showed DH the info on the Autism website (he works with adults with SEN) and he thought likely. So I feel if anything, he should mention?

So tricky. I wouldn't want her labelled for no reason, but watching her try to interact can be really heartbreaking, and also when she has a big upset, she can get inconsolable.

Any advice or just thoughts really welcome. Thanks x

Yeah its hard to get a diagnosis of PDA but it is an autism spectrum disorder and girls often do seem to present in this way.

I have a daughter who has a dx of Asd but who is massively demand avoidant. She also masked her difficulties at school which led to all sorts of problems.

Without a dx your niece could well have a hard time as she gets older . Good on you for passing on some info I hope they take it on board.

Thank you Patience yes that is what I am worried about, that she will find things more tricky as she gets older without a diagnosis. I read somewhere that around 50% of undiagnosed ASD women experience mental illness, from depression to other things, and would hate this to happen to her. Thanks again x

My experience is exactly the same as ineed my dd is 8 and would probably have PDA, but it is not recognised by the diagnostic manuals, so is instead referred to as extreme demand avoidance.

We have relaxed most demands on her, and while we've seen some improvement (she doesn't spend her whole time raging, she may cope with a small play date) but she is still pretty difficult. It's a particularly sad day today as it's been challenging that I can never see her happy or relaxed like her sisters. She certainly seems more 'autistic' to me now, but I wonder if that is because she is getting older and she seems more immature.

The one big thing about PDA is that she always seemed so awkward physically. Descriptions of PDA was really like reading a book about her!

I was certainly resolved in seeking a diagnosis for her when reading, like you, about the high levels of undisguised fsles and the strong comorbidity with mental health conditions. Dd has two uncles with schizophrenia and bipolar. Getting a diagnosis was a shitty long-winded affair, but certainly worth it!

Oh yes, my dd is also an amazing masker. Fucking fed-up with people telling me how great she is, are they sure she has ASD, of course it will all be ok....

I think that is probably true macaroon about the depression etc! Many females with autism get mis diagnosed before the get an Asd diagnosis. Sadly many proffs are still missing the female presentation of Asd, even when bpys present in this way they get missed.

This is going to sound awful but I used to wish my Dd3 would throw a chair or swear at a teacher because it seemed to be the only way to get school to see that she had any issues! ( She never did by the way)