Tuesday, 15 April 2014

Pushing for action within the National Autistic Society

In supporting PDA we (the PDA army as we are commonly known) are constantly banging our heads against walls in getting PDA diagnosed for those who need it. The main reason is that its not in either the American or British medical directories. It is, however mentioned in the NICE guidelines which some counties use (Berkshire don't).  The NICE guidelines are not official for diagnostic purposes so areas can pick and choose from them which is why we currently have a postcode lottery for diagnosis.

However, we also have another problem. When people ask the professionals about PDA and diagnosis, the majority get the same reply.  "PDA is not autism, its a condition related to autism".  Yet, the NAS website clearly states that it is increasingly recognised as part of the autistic spectrum.

So why the confusion?

Part of the confusion is simply the lack of understanding. Another part of the confusion is the awful state of random diagnosis and recognition of the condition. The biggest part of the confusion, we believe is the National Autistic Society web site.

Despite clearly saying PDA is part of the autistic spectrum, the NAS website fails to mention it alongside autism and aspergers in its main headings. PDA is hidden away in related conditions, alongside ADHD, epilepsy and dyspraxia.

Lets be clear. PDA is a type of autism. It is NOT a condition related to autism. It falls on the autistic spectrum and should be as easy to locate on the NAS page as autism and aspergers.

Several people have written to the NAS and asked them to amend it, but as yet, none have had a reply.  We have found a link on their website asking for feedback from their pages. So we have left feedback. In fact, I think a lot of us have left feedback!

We would really like to see their website changed to reflect PDA in the correct manner in which it should be. PDA children meet the triad of impairments of all other autistic children. Sometimes its harder to see because they are able to mimic social behaviours and 'blend in'. But its there, they are autistic and we really need to let everybody see that.

If you are willing to help, please follow the link by clicking HERE. It will take you to a form to fill in with your feed back. We would really appreciate as many people as possible filling the form in and putting something simple like

 'Please change your website to place PDA alongside autism and aspergers instead of in the related conditions'

There is volume in numbers. It will be a big step to get this changed. It will be a start in the right direction of getting PDA recognised. And it will mean families of PDA children can point to the NAS website and say 'It is autism'

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