PDA acceptance and my PDA son

Tomorrow is PDA Day in the UK. It is my first one as an insider in the PDA community, and it falls the day after yesterday. Yesterday my son was diagnosed as autistic and as PDA. That came as no surprise to me, or to a few other key people in his life, though it will probably surprise plenty of others. Many people won't understand. Many will make assumptions, mostly because they don't understand. For the ones who do get it: they know this is one more step on a road that has already had many, with plenty still ahead. The difficult part does not end here just because I feel relief.

And yes, I am relieved that my son is autistic. I am relieved that we have this label of PDA. Why? I will tell you why.

What a strange thing to say. Being relieved to finally have a diagnosis, relieved to find out at last what is “wrong” — that would be understandable. But that is not it. That is not why. I came to this having researched it every possible way, because I wanted to understand my son. I have read the research papers, the websites and the blogs, on every scenario going. I have watched professionals, and PDA adults, and PDA children, talking about their experience. I have spoken to PDA adults and to parents of PDA children. I have listened to my child at length, and I have listened to myself, and to 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 that I very likely am one too. I don't think I needed a professional to tell me I was right. It helps, though. Bloody hell, it helps in certain situations, because I get that privilege.

For many parents whose child is on the spectrum but does not show the most “classic” signs of autism, and especially for those who fit this PDA neurotype, getting their child's difficulties recognised, assessed, diagnosed and — most importantly — supported is a hugely difficult road. It is made close to impossible, and watching your child suffer while everyone seems to be working against you is heartbreaking and infuriating. I have watched other parents tear themselves in two for their children, and I have not been watching that long in the scheme of things. They struggle, often alone, without support or compassion from any of the services that are supposedly there. Meanwhile their friends and relatives doubt. They doubt PDA is real. They doubt the child is autistic. They question the parent until the parent starts questioning themselves. All the while, the child struggles. It is not good enough, and it is not acceptable.

I have had to battle my own guilt about being able to step outside a system that could not help my son, and pay for proper care. Privilege won, as it will when your child's welfare is on the table. I chose private support and private assessments, and even then it was not fast enough to get my son supported properly. He is not in school at the moment, because the lack of support across the school years has done too much damage to his mental health. That is not good enough, and it is not acceptable, and I will not accept it.

I will not accept a lack of understanding that failed to support my son, and I certainly will not accept that the only realistic route to any support is paying thousands of pounds for it. I am relieved that I have access to care that everybody ought to have. I am also relieved that I am me, because I will not let the system stand as it is for everybody else. I will not accept it. While I fight to support my Bear in every way I can, I will fight for the others too.

Because it is autism. Eighteen months ago I was somebody who thought she knew a good deal about child development. I knew almost nothing about neurodiversity, or even that I was neurodivergent myself. I am not generally an ignorant person, but I was profoundly ignorant about this without realising it. Understanding neurodiversity, in all its forms, has led me to a much deeper understanding of people and of how wide human experience is. Beyond that, I have learned that being autistic, and having ADHD, is not a negative thing. Being autistic means a million brilliant things at the same time as the many struggles of living in this world. I am relieved that the struggles my son faces will have their difficult moments, probably many of them, but that they can be supported and managed. With love and understanding he can be proud of this, and it may take him further than he would have gone otherwise.

Because it is PDA. Autism and ADHD both carry a negative reputation and a heavy stigma, and there is little knowledge of these neurotypes in the general population unless one has touched your life. If that is bad, it is worse for PDA. PDA is virtually unheard of outside the community. Many professionals don't understand it, and the picture usually painted is of completely out-of-control, defiant, potentially violent children. It is sometimes wilfully misunderstood, and muddled up with other things. So why would I be relieved that my child has this label? Because I have spent time in the community. I have watched and talked with parents and adults in it, and what I have found there is more acceptance, more collaboration, more mindful, respectful and empathic communication, parenting and friendship than anywhere else I have been. As far as I can see, PDA means people who need their own freedom, and who wholly respect the freedom and humanity of everybody else.

I am proud, and relieved, that my son — and probably I — belong with those people, and that our struggles, bloody hard as they often are, sit alongside strengths of that size.

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 read about it on the PDA Society website. The theme they have set this year is “Improving outcomes”. You can read what that means in the PDA Society newsletter for 2019, and you can get involved here.

If you want to spread awareness of the PDA neurotype, it is still badly needed. Please read and share my article “Describing PDA”. You will find a lot of useful resources at the bottom of it.

One of the things people are being asked to do is make a PDA pledge. You can click below to see mine for 2019.

pda_pledge_2019.pdf

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