I am not a professional and have never claimed to be, I am a parent who has spend umpteen hours researching autism, aspergers, and PDA, specifically in relation to girls and women.
The main problem I have encountered is the dual meaning of the word autism.
In the book understanding PDA in children by Phil Christie et al – pages 13 and 14, the issue can be a little confused. This is due to the change, as described in the book, of the term Pervasive Developmental Disorders to Autism Spectrum Disorders. Now, the book says that this is because the word autism is already well known, which is why it has become the umbrella term that pervasive development disorders once was.
This has majorly confused some parents (and teachers) when reading the following statement….
Pathological Demand Avoidance Syndrome (PDA) was first described in the 1980s, by Elizabeth Newson, and is a pervasive developmental disorder related to, but significantly different from, autism and Asperger’s syndrome, and is increasingly becoming recognised as part of the autism spectrum
Now, Newson ALSO said,
PDA is ‘a separate entity within the pervasive development disorders’.
And on her diagram which has Autism, Asperger syndrome, PDA and specific language impairment, she labels it
Figure 1.1 the family of pervasive developmental disorders (sometimes ‘autistic spectrum’ is loosely used to describe the whole family (Newson 1999)
This is before the shift towards Autism Spectrum Disorder as the umbrella term, so it was…
PERVASIVE DEVELOPMENT DISORDERS (PDD)
Kanners/classic Autism (low and high functioning)- Asperger Syndrome- Pathological demand avoidance (PDA)
It has now become…
AUTISM SPECTRUM DISORDERS (ASD)
KANNERS/CLASSIC AUTISM (low and high functioning) – ASPERGER SYNDROME- PATHOLOGICAL DEMAND AVOIDANCE (PDA)
By this rule, if a child has a diagnosis of PDA, they then are considered to have an autism spectrum disorder. Which means the use of the word ‘AND’ or the symbol ‘&’ when receiving a diagnosis of ASD PDA, only goes to show the lack of understanding from the diagnosing practitioner. Technically the proper diagnosis would be ASD- subtype PDA. This satisfies the need for everyone involved with the child and the child themselves to understand that PDA is a form of autism/ a pervasive development disorder, but it also gives the signpost of PDA, which points to the correct strategies and placement within the Autism spectrum.
Newson does say that are some children that fall between these ‘typical clusters’. I believe this means that some children will have qualities of both conditions. Dinky seems to lean towards the high functioning autism subtype of ASD alongside PDA. Everything that disproves a straight forward autism diagnosis falls under PDA, and the one thing not commonly seen in PDA screams high functioning autism. I know a lad that has a diagnosis of PDA and I would say he leans more towards Asperger syndrome. Both kids need much more of a PDA approach. Both are extremely similar yet there are things that set them apart.
I find PDA strategies are the most effective with Dinky, however now and next does seem to work with her, as does a visual timetable. The visual timetable can not be too detailed otherwise it will cause anxiety and lead to meltdown, which is the typical PDA response to strong routine. However, she gets to choose some of the activities, which gives her the control she needs. The now and next helps reduce her anxiety by letting her prepare herself for transitions. If her anxiety is too high she still will struggle.
This would suggest that the most effective diagnosis for Dinky would be ASD- subtype PDA.
A child who conforms more to traditional autism/Asperger syndrome strategies, the most effective diagnosis would be ASD subtype Classic autism or Asperger syndrome.
I don’t see how a diagnosis of high functioning autism AND PDA, would be of any use to Dinky. Professionals involved would try and use traditional autism strategies and fail, and PDA ones will succeed. Meaning the diagnosis of high functioning autism would be obsolete. This is why I do not understand how diagnosticians are comfortable diagnosing both. Surely a diagnostic report stating the crossover areas the child has difficulties with should be adequate.
So that is my view, and a view I shall back up in Dinky’s assessment appointment with the paediatrician tomorrow, and the educational psychologist on the 21st.