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Original poster

Has anyone's child been diagnosed with PDA (Pathological Demand Avoidance)?

45 replies

Oh2beatsea · 09/04/2017 22:14

We recently saw a Paediatrician who didn't feel my 9 year old daughter had autism as she has friends and can make eye contact!
When I asked about PDA the dr said they don't diagnose it as it would come under the autistic umbrella but I could ask our GP to refer her to a private clinic specialising in PDA (costing £3000) which would need CCG funding. This didn't make sense as she didn't think my daughter had autism. Has anyone managed to get PDA diagnosed via the NHS?

OP posts:
Jamhandprints · 09/04/2017 22:17

What is this?

OneThingAndThenTheNext · 09/04/2017 22:19

I know a few people with a private diagnosis, or an NHS diagnosis of autism with demand avoidance traits. Don't know of any NHS actual PDA diagnosises.

outputgap · 09/04/2017 22:25

A child psychologist working in this area told me recently that the UK doesn't really recognise PDA as a separate diagnosis, but instead it is an expression of autism, and that's what the diagnosis would be.

emochild · 09/04/2017 22:25

My dd has a diagnosis of aspergers with demand avoidant traits

Nhs psychologist said that's the closest they can diagnose to pda in our area

We have discussed the pros and cons of a private diagnosis but the demand avoidance listed as part of her diagnosis, and a fantastically supportive camhs worker, means that she's getting the support she needs in terms of EHCP provision without an explicit diagnosis

soapboxqueen · 09/04/2017 22:25

It isn't in the WHO diagnostic manual so it's a bit of a catch 22. It isn't diagnosed because it isn't in the manual, it isn't in the manual because nobody is diagnosing it.

My ds has autism with pda traits.

Starlight2345 · 09/04/2017 22:27

I am on a FB group for PDA uk.. It does talk about areas that diagnose and under what.. My DS doesn't have the diagnosis but head thinks he does have it.

Mogtheanxiouscat · 09/04/2017 22:45

You can make eye contact and have friends and still have aspergers. Particulary girls.

Can you get a second opinion?

Original poster
Oh2beatsea · 12/04/2017 15:24

Thanks everyone. We have a CAMHS first appointment coming up soon. I'm thinking of printing off the PDA checklist to discuss. The SENCO at her school also explained the difference between boys and girls with autism and how girls mask very well. The Paed diagnosed General Anxiety Disorder, hence the CAMHS referral but I feel she missed the point really. I feel if we don't get the correct diagnosis now, it could become really difficult as she moves up to senior school and when the hormones kick in!!

OP posts:
potatoscowls · 12/04/2017 15:27

Go to the lorna wing centre in kent if you can. They diagnosed me (after 18 years undiagnosed)
All the best

Blossom789 · 17/04/2017 15:19

I think camhs would be far better placed to assess. Take your queries about PDA but also think about autism as pda comes under this umbrella. Look up the triad of impairment and consider any examples where your daughter may fit. The Australian aspergers scale is also helpful www.aspennj.org/pdf/information/articles/australian-scale-for-asperger-syndrome.pdf I wouldn't imagine camhs would pay too much attention to what the paediatrician has diagnosed and will make their own assessment. Hope it goes well.

Original poster
Oh2beatsea · 21/04/2017 11:09

Hi Blossom. Thank you so much for this - you seem very knowledgeable. The Australian scale is pertinent too - I can tick lots of those!
Thanks again- much appreciated.

OP posts:
Blossom789 · 21/04/2017 12:54

You're welcome, I work for camhs and have quite an interest in assessment and understanding young people's behaviour and mental health. I always find it helpful to have some written examples when using the questionnaire especially if your scoring 5 or 6's. Good luck, will you post again when you've had the appointment. Any other queries give me a shout.

differentnameforthis · 21/04/2017 13:50

Urgh..I wish paediatricians would get with the times!!! Making eye contact and having friends does not rule out autism!!

OP, be aware that often times, in my experience, autism in girls can be and is misdiagnosed as a behavioural issue.

Original poster
Oh2beatsea · 23/04/2017 20:31

Thank you Blossom and Different for your help. Yes I will report back when we've had the appointment.

OP posts:
notapizzaeater · 23/04/2017 20:40

My son has ASC with demand avoidance and makes lovely eye contact, has a wicked sense of humour and lots of real empathy ...... Bloody annoying when they blanket everyone !

differentnameforthis · 24/04/2017 09:49

Good luck! We have an assessment booked for May for ASD for our 8yr old. She has friends, although misses many social cues, and she is hit and miss with eye contact.

Imnotacelebgetmeouttahere · 24/04/2017 09:51

My 3yr old DD was diagnosed with Autism with a PDA profile as it's not considered a stand alone diagnosis in our area - but she has autism anyway so sort of irrelevant!

Eye contact is common in girls Hmm as are superficial social skills so she may well have friends and still have ASD

imip · 24/04/2017 09:52

Op, looking around the SN boards here is also very useful. My dd8 has ASD and is demand avoidant. She can tick every box on a PDA checklist but it isn't diagnosed by cahms in my area as it is not included in DSM5.

Happyathome123 · 07/05/2017 08:39

PDA is a form of autism. My daughter has ASD diagnosis with demand avoidance but I consider it to be PDA and those are the strategies I I use to manage. Being a PDA parent is exhausting.

SophieofShepherdsBush · 07/05/2017 08:48

notapizza my DS is the same. Good eye contact, empathy, imaginary play. No stimming. He still has autism very clearly, and to me it seems PDA ish, and the strategies used for PDA work.
I would push for an autism diagnosis in order to access help, but apply PDA techniques anyway. @Poltergoose ?

Happyathome123 · 07/05/2017 08:51

Unfortunately as PDA is not yet in the medical books. But it is accepted by the autistic society and recognised by many medical professionals. It will be in there eventually but could take years. I went to a course a few weeks ago many kids were on there 4th school place. Often as far as I can see this it's often years before these kids get the help and the proper approach they need. I would say if you are a parent of one of these children read all you can about it. Use your energy on taking care of yourself and your child's needs. We have to become advocates.

Happyathome123 · 07/05/2017 08:53

My daughter is 12 now it's not easy but she's come a long way. Love to anyone living with this condition. X

Imnotacelebgetmeouttahere · 07/05/2017 09:00

Happy at home - I have a 4yr old girl with PDA and I'm already exhausted beyond belief - and you have a 12yr old Gin for you!

Happyathome123 · 07/05/2017 09:07

Smile Hang in there. X

differentnameforthis · 07/05/2017 10:02

Eye contact is common in girls hmm as are superficial social skills so she may well have friends and still have ASD Yup...except the psychologist she saw through the school last year said she couldn't possible be autistic, as she makes eye contact!! Oh and has a friend [grr]