Against All Odds: Pathways to Diagnosis
One of the pieces of false advice that happen at the start of a parent’s journey is when they are told you won’t get a diagnosis of Pathological Demand Avoidance (PDA).
For those of you who are relatively new to this blog, getting a diagnosis of PDA is a very difficult thing to do. It can often be a postcode lottery as to which counties will formally use this as a stand-alone diagnosis.
In turn, this has a knock on effect as to whether the child, and family, receive the support and adjustments to make life more manageable and for the disability to be better understood.
So when a parent finds this profile, which fits into the Autism Spectrum Disorder (ASD) family, they are often told the following things:
1. PDA does not exist or you won’t get a diagnosis here.
2. ASD covers all the profiles.
3. And sadly you’ll have to go privately.
Many of us parents are forced down route number 3, which is only worthwhile doing if the relevant professional assessing your child happens to be recognised independently by the health teams in your local area.
Also, they need to know their stuff which means not all children who could meet the threshold for having a communication disorder will be picked up by diagnostic systems such as the ADOS. Most of these individuals are very proficient in their knowledge, hence the reason parents turn down this route to desperately receive the correct support.
It’s important, as a quick aside here, that parents with a child who mask their disability may often get picked up more readily using the DISCO assessment criteria.
This is not something that I have experience of – fortunately we never got to this stage.
For my daughter, a diagnosis came quicker because she was so explosive, but other parents often talk of the DISCO being more successful to a child who may ‘hold’ their disability in.
Quite often labels hang in the air like ODD* (Oppositional Defiance Disorder) and/or Conduct Disorder, as well as saying the child is unidentifiable – PDD-NOS (Pervasive Development Disorder Not Otherwise Specified).
This can be so frustrating for parents, for when only PDA is correctly addressed and the PDA strategies are employed, can we see less distress on the child. More importantly, traditional style parenting techniques will only make these children more challenging and that is key. Something I wish I knew when I thought I was persistently doing the right thing!
I could talk in depth to how we got our diagnosis and how we received the label ASD with Significant Demand Avoidance – I can feel myself going off on a tangent here as that took lots of research and fighting to be told that the avoidant part could just be how she is now! Or better, how autism presents in girls … *cue scream* from a very tired and frustrated mummy!
However, we got it. Sod the wording, it was there in black and white.
ASD with Significant Demand Avoidance.
Otherwise known as PDA.
The educational team around us continued with the words PDA and that is how it was then put in her EHCP. The health team had their hands tied and eventually they caught up. The correct terminology of PDA is now used by all involved.
So after the countless calls and noise I was making it kind of paid off, as everyone around us changed the viewpoint that she was not a naughty child anymore but an anxious child with Autism. A child whose nervous disposition meant that she avoided demands to not a significant amount but to a pathological impact on her life.
So here are my, by no means exhaustive, top tips for a pathway to diagnosis:
1. Research, research and do more research.
2. Document everything and keep a paper trail of any communication between parent and school, phone calls home or adjustments to learning style.
3. Keep a diary… what are those extra lengths you go to just to operate day to day living. Are there any triggers? Is there a pattern of meltdowns post a social event. How long did it take to get your child to do simple demands?
4. Jot down any unusual behaviours and any times when it shows a real sense of the lability of mood swings. Are they impulsive?
5. Can you record any overloads without distressing the child any further?
6. Do they move compulsively from obsession to another?
7. Fill out the EDA-Q link here which might be indicative of a demand avoidant profile ( I also got the class teacher to do this and we were one mark apart – it carried some weight in what just ‘mum’ was seeing).
8. Use PDA parenting strategies (click here) from the PDA Society to document if it has a positive impact on the child.
9. Connect with parents, join a support group as the collective knowledge will support you through your difficult times.
10. Go with your gut instinct (you know your child better than anyone). Have confidence to use your research and challenge what others may say. It may just pay off.
If I had known at the start that there were ways to finding a correct diagnosis, then it may have eased some of those early worries I had.
I felt so defeated before I started, but against all odds, there were pathways to a PDA diagnosis.
*To read the difference between PDA and ODD, please check out this informative blogpost by Steph’s Two Girls Click here – the article may help to distill some of the discrepancies between the two diagnoses.