My Area Doesn’t Recognise PDA As A Formal Diagnosis, What Can I Do?

My Area Doesn’t Recognise PDA As A Formal Diagnosis, What Can I Do?

The reality is that although PDA is becoming increasingly recognised by those that work with children and young people with autism there are still many areas where it is not officially diagnosed. Most are given a diagnosis of Autism or ASC (Autism Spectrum Condition), which can leave parents worried that their child’s PDA will go unrecognised.

If you are in this position what choices are open to you:

Ask For An Adjustment To The Paperwork

Many areas that will not diagnose are willing to make the concession of writing ‘PDA strategies are likely to help this child’ on either their diagnostic report, the psychologist’s report or on the EHCP itself. Having this in black and white will ensure that professionals who come into contact with your child know which strategies will help them and therefore they are more likely to get the support that they need to be successful.

Go Down The Route Of A Private Assessment

Private assessments can be expensive, and it’s worth noting that many areas do not officially recognise them. That said they are good for giving you the confidence that your gut feelings are correct and will help to reassure you that you aren’t going mad. They may also help by giving strategies which school can then use to help your child, and give you added clout for explaining why those adjustments are reasonable.

Educational Provision Should Be Dictated By Need Rather Than Diagnosis

The education system is theoretically based on need rather than diagnosis. So although, I know it doesn’t always work that way in practice, if you can evidence your child’s needs the education they receive should reflect those needs. If your child has an Autism diagnosis, your local autism team should be able to be contacted via your LEA. As a team of specialist teachers they will be able to advise both you and school on strategies which will help your child. Crucially the criteria used to assess for an EHCP, if your child is given a diagnosis of PDA, will be exactly the same as if they are given a diagnosis of autism, so a lack of a more specific diagnosis shouldn’t mean your child gets less support.

Educate Yourself

There are some fantastic resources out there. The PDA Society Website  is a great place to start, as are blogs by other parents who understand like Steph’s Two Girls and those by adults with PDA like Riko’s Blog. Arming yourself with strategies to use at home and at school will make you feel more in control, both of the behaviours you are seeing at home and in meetings with school staff.

If school are struggling for strategies to use, why not direct to our post about easy way to reduce demands in schoool, things mainstream secondary schools should know about PDA or our extended PDA Strategies video, perfect for using during staff training.

Be Persistent

As much as I would love to reassure you that all children are getting the help they need to be the best that they can, the reality is that with the current budget cuts and lack of SEND training for teachers the reality is a very different picture. The children who receive the best support, are the children whose parents are the most persistent. Get in touch with your local parent partnership service and understand what help your child should be entitled to and then fight for it.

Don’t Lose Hope

The wheels of the NHS turn slowly, just because PDA isn’t recognised in your area now, doesn’t mean that it won’t be in the future. Log relevant details about your child’s behaviour and ask school to do the same, that way if things change you have the evidence you need to ask for your child’s diagnosis to be changed when the time comes.

What Next?

If you do want to learn more you might find our autism section a useful place to start. It’s full of different strategies to try out.

Our Facebook Group full of parents and teachers of children with autism who are working together to share strategies.

Or if you’re looking for more personal support, why not check out our Consultancy Services.

If you join our tribe at the bottom of the post, you’ll also receive our free PDA Strategies Checklist, perfect for sharing with others.

If you need any further help or would like me to explain anything further don’t hesitate to drop me an email.


7 thoughts on “My Area Doesn’t Recognise PDA As A Formal Diagnosis, What Can I Do?

  1. Hi my son was diagnosed with PDA by a private clinical psychologist ordered through the courts but camhs have totally disregarded the report. So I’ve set up a government petition for this. Xx

  2. Ah thank you so much for the mention. I do get asked about diagnosis a lot, and it is sad that practitioners are not always as switched on regarding PDA as the parents they are meant to be helping. Some are though! I definitely advise parents to keep diaries, of what’s happened when and what was said etc, as it’s so easy to forget x

  3. My son got a diagnoses of ASD using the PDA criteria that I stumbled across on NAS website and sent to them staying ‘is this not my son?’ I was told my area did not recognise it and it was best I never mentioned it as some proffessionals saw it as a red light for neurotic mothers and bad parentings. However I was persistant not least because standard asd stratagies did not work with my son. In response to my insistance that he presented as PDA the social services were contacted by the interventions team he was under due to school refusals and I was accused of ‘medicalising’ my son in an attempt to ‘keep him from the world’. He had a diagnosed of asd!!? PDA is a spectrum condition! People who don’t live in areas where it is completely buried really have no idea how bad it is. I was going to go down the private diagnoses root but was told in no uncertain terms that it would be completely disregarded. Things are much better these days, I now home educate my son and professionals who see him regarding his ASD can’t believe what a different child he is now he is exposed to only PDA stratagies. However they still dont recognise he has it, the irony.

    1. I’m so sorry that you have had such a bad time, but so glad that things are improving for your son. I hope that one day with more knowledge things will be very different x

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