Everything is a fight when your child has PDA!

It also doesn’t get any better for the adults, as Julia, author of the blog ‘me, myself, and PDA’ could tell you!

However as a parent of a 6 year old, I can only describe how much of a fight it is as a parent.

When I found out about PDA, I was actually happy that I could now explain why Dinky is the way she is. The criteria and the description felt like it was written about Dinky. However I wasn’t prepared for what followed.

I wasn’t prepared:
> to find diagnosis is a postcode lottery
> to find out that some places deny it is a condition
> to hear people say that it is not autism
> for the level of autism top trumps
> to have to speak to clinical directors and heads of services to get what should be standard.
> for professionals not to accept medical advice from other professionals
> to have my parenting questioned over and over
> the amount of research it is necessary to do in order to teach professionals about my child and PDA.
> to have autism services turn Dinky down because they don’t understand autism.
> for 2 broken down school placements before she had been at school for 4 terms
> for the stress that is getting a statement of educational needs
> for the constant battle that is trying to access support.

A few months ago I filled out a form for the countywide autism services, yesterday I received a phone call….

Lady : “Hello, I’m calling regarding autism services for Dinky”

Me: “yes”

Lady: “Unfortunately due to the fact that PDA is not autism, Dinky will not be able to access our services at this time”

Me: “but PDA IS an autism spectrum condition”

Lady: “unless the diagnosis says autism, then Dinky is not eligible for services”

Me: “but why is that necessary? PDA, according to the paediatrician, educational psychologist and the social communication team, IS a form of autism”

Lady: “I will have to put you through to my manager”

Me: “ok”

Manager: “PDA is not autism, unless the diagnosis says autism then she is not eligible for our services, the county council want to know that we are providing services for children diagnosed with Autism”

Me: “but our county DO accept that PDA is autism”

Manager: “sorry but only some professionals agree it is autism, she hasn’t got a full diagnosis yet anyway so she is still not eligible for services until she gets a full diagnosis because it might be taken away”

Me: “the only reason she hasn’t got a full diagnosis is because there is a backlog on the waiting list for final stage assessments”

Manager: “we shall keep her on file incase she does get an autism diagnosis, but it HAS to say autism. Ok. Bye”

I was furious, it didn’t occur to me during the conversation, but it did afterwards that there is a lad that I know didn’t have any diagnosis and he was allowed to attend the groups, even now he hasn’t got an autism diagnosis. Plus there is another child that I told the parents about PDA who had his Aspergers diagnosis changed to PDA a while ago, who attends the group as well. It seemed to be extremely unfair that Dinky was not allowed to.

So yet again I face a choice…
Do I
A) leave it?
B) email them and question the fact that other children in similar diagnostic positions have been allowed to attend, it should not be one rule for one and one rule for another?

Of course, to me there is only one course of action…. Action.

I’m not about to stand by and be fobbed off by an autism service because my child hasn’t got the ‘right type of autism’! Or because an autism service doesn’t understand the autism spectrum!

So I sent them feedback

To whom it may concern,

After a phone call this afternoon regarding support for dinky, I spoke to other people whose children use your services (the groups).
One of whom has not got a diagnosis, and another who has just had their son’s Aspergers Diagnosis changed to PDA.

Yet I was told that without a full diagnosis, or even with a diagnosis of PDA that dinky is not eligible for support from You.

I did mention at the time, and still insist that PDA is an autism spectrum condition. CAMHS wouldn’t see dinky as PDA is an ASC, and therefore the CDC have put her on the social communication pathway, of which we are waiting for the final stage, for an ASC diagnosis of PDA.

So to be told that an organisation that helps families with members who have an ASC, that my child, who the paediatrician, the educational psychologist, and the social communication team, all believe she has PDA but have to follow protocol, regarding diagnostic procedure, wouldn’t get support even if diagnosed PDA, is a little upsetting.

It seems mightily unfair that the other two families mentioned earlier can still access services, without a diagnosis or with a PDA diagnosis.

When I have spoken to 4 different members of local staff about dinky, and accessed behaviour 1:1′s all 4 have been accepting of PDA. They even have PDA information cards with the other information leaflets.

I would ask that this matter be looked into further please,

Regards

I received a phone call this morning from one of the 4 staff members who I have spoken to before said that she had seen my feedback form and wanted to call as she didn’t want me to be upset by it. She said that she agrees with me and as I quite rightly pointed out they do have other children accessing the services who do not have a diagnosis, and who have a PDA diagnosis. She said she will look into it for me.

I’m just so fed up of having to justify PDA to people.

I then received this email

Thank you for your email. I am sorry to hear you are disappointed with the outcome of your enquiry following your conversation with the Manager of the Children’s services yesterday. Unfortunately, the manager is now out of the office until after the Easter break. I will discuss your concerns on her return to work and respond at that time.
Regards

So I emailed back

Thank you

I have compiled a list of websites and included research where it shows that PDA originated and lives within the autism spectrum, I would appreciate it very much if this could be passed onto the manager when she returns.

http://www.thepdaresource.com

http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf

http://adc.bmj.com/content/88/7/595.full

http://www.norsaca.org.uk/public-download-categories/pathological-demand-avoidance

- there are LOADS of documents as NORSACA are connected with the ENC which is the birthplace of PDA.

https://www.edgehill.ac.uk/documents/health/conferences/communication/LizONions.ppt

http://www.autism.org.uk/our-services/training-and-consultancy/specialist-training/pda-one-day-workshop.aspx

http://www.autism.org.uk/~/media/nas/documents/news-and-events/nas-conferences/pathological-demand-avoidance/pda-conference-plenary-session-fhappe-and-lonions.ashx

Regards

It just seems barmy that an autism charity would dismiss PDA so easily, but unfortunately they are not alone in doing so.

The national autistic society ALSO dismiss PDA, relegating the condition to the related pages section of their website to sit along side conditions that are not ‘on the spectrum’. Yet there are a number of pages on the site that say that PDA is an autism spectrum condition, or is ‘increasingly recognised as’ a condition on the autism spectrum.

So the PDA army have been leaving messages on the website feedback forms requesting that this discrimination of PDA end, by NAS putting PDA with autism and Aspergers on the main pages.

(If you have 2 minutes to spare and could also ask them to do so both myself and dinky, and all the other children and adults being discriminated against in the autism community would be extremely grateful :-) )

http://www.autism.org.uk/news-and-events/about-the-nas/contact-us/contact-the-web-team/website-feedback.aspx

I wasn’t prepared, but it won’t stop me fighting for Dinky and others like her

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3 thoughts on “Everything is a fight when your child has PDA!

  1. I can relate. I have an Asperge’rs diagnosis while I’m totally unsure whether this si correct. The professional diagnosisn gthe AS said he was just giving me a label so I could get services. I understand your struggle when your child gets a diagnosis that fits 100% and cannot get services because it isn’t recognized. The same goes on here in the Netherlands with McDD, which is an autism spectrum condition characterized by emotion regulation disorders and thought disorders in addition to the autistic traits. I’m pretty sure I have this (I also have PDA traits but don’t recognize the full description) but instead I get a diagnosis of borderline personality disorder and then people are questioning my autism/Asperger’s diagnosis. Oh sorry for ranting. I just wanted to let you know you’re not alone.

  2. Pingback: I win one… Wait for everything else! | Dinky and Me

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