What a weird thing to say. I mean, being relieved that you finally have a diagnosis or relieved you are finally finding out what is "wrong", that is understandable right?
But that isn't it. That isn't why.
Because I knew
I have researched in every possible way to understand my son. I have read research papers, websites, and blogs on every possible scenario. I have watched videos of professionals, and of adults and children with PDA, talking about their experiences. I have spoken to PDA adults and parents of PDA children. I have listened to my child extensively, and I have listened to myself and the child I once was. I have struggled and cried and learned, and I have known for some time that my son is a PDAer, and likely so am I.
I don't think I "needed" to have a professional tell me I was right, but it sure bloody helps in certain situations.
Because I get that privilege
For many parents who have a child on the spectrum where their child does not show the most "classic" signs of Autism, and particularly for those who fit this PDA neurotype, it is a hugely difficult path to have their child's difficulties recognised, assessed, diagnosed and most importantly, supported. It is made virtually impossible, and watching your child suffer whilst everyone seemingly works against you, is heartbreaking and enraging.
I have watched, and not for that long in the scheme of things, as other parents tear themselves in two for their children. They struggle alone often, without the support or compassion of any of the services that are in place., and meanwhile, their friends and relatives doubt. They doubt if PDA is real, they doubt that the child is autistic, and they question the parent until the parent is driven to question themselves. All the while the child struggles. It is not good enough, and it is not acceptable.
I have battled my own guilt for being able to step outside of a system that could not help my son and pay for the privilege of proper care, and privilege won, as it always will when faced with the welfare of your child. I chose private support and assessments and it still wasn't fast enough really to ensure my son was supported correctly. He is currently not in school because the lack of support in the years of school gone by have had such an impact on his mental health. It isn't good enough, and it isn't acceptable and I will not accept it. I will not accept the lack of understanding that did not support my son and I certainly will not accept that the only realistic way to get any support is to pay thousands of pounds for it.
I am relieved both that I enjoy the privilege of having access to care that everyone should have, and relieved that I am me, and I will not let the system stand as it is for everyone else. I will not accept it. Whilst I fight to support my Bear in every possible way, I will also fight for the others.
Because it is autism
Eighteen months ago I was someone who thought they knew a lot about child development. I knew virtually nothing about neuroodiversity, or even that I was in fact neurodivergent. I am not generally an ignorant person but I was hugely ignorant about this, without realising it.
Understanding neurodiversity, in its many forms, has led to a much deeper understanding of humans and the breadth of human experience. But beyond that, I have learned that being autistic (and ADHD) is not negative. Being autistic means a million awesome things at the same time as the many struggles to live in this world.
I am relieved that this struggle that my son faces will have its difficult moments, probably many, but ultimately those struggles can be supported and managed. And with love and understanding, he can be proud of this, and it may help him achieve more some day.
Because it is PDA
Autism and ADHD both have negative reputations and huge stigma attached to them, and there is little knowledge and understanding of these neurotypes in the general population, unless one has touched someone's life. If this is bad, it is even worse for PDA. PDA is virtually unheard of by the general population, it isn't understood by many professionals and the view that is often portrayed is one of completely out-of-control, defiant, potentially violent, children. It is sometimes wilfully misunderstood and muddled with other issues. So why would I be relieved that my child has this label?
I am proud and relieved that my son (and likely myself) belong with those people; that our struggles, though sometimes really bloody hard, are there alongside strengths of this magnitude.
Today is PDA DAy:
So about PDA day. PDA stands for Pathological Demand Avoidance and it is a little-known part of the Autism Spectrum. You can find a description of PDA here, or you can read about it on the PDA Society website. The theme they have set this year is "Improving outcomes". You can read all about what this means from the PDA Society here: The PDA Society PDA Newsletter 2019. You can get involved here: What I can do for PDA Day 2019.
If you want to spread awareness of the PDA neurotype, it is still really needed. Please read and share my article "Describing PDA". You will find a ton of useful resources at the bottom.
By Emily Wilding Fackrell