Making a difference a post at a time

I don't have a job.

So why are you entering this competition I can hear you ask.

Two years ago, I received my autism diagnosis. I was already a part of many autistic-led and neurodiverse Facebook communities for several years, but hearing those beautiful words of validation, that I wasn't broken, just different, ignited a fire within me. I had spent so many years under the umbrella of mental health, spent years feeling invalidated and passed over. I took the meds, I did therapy, and still, something wasn't right. I'd spent years feeling lost and useless, worthless, nothing to offer. The validation and acceptance I found with other autistic people began to change my life. Following autistic advocates prompted almost daily epiphanies...finding my people with whom I could yell ' ME TOO' loudly and proudly. These people, these shared experiences, saved me.

The more confident I became in my authentic autistic self, the more I felt the compulsion to add my voice to the growing collection of positive voices for Autism. I need to speak, I could not stop the words flowing from me, held behind a dam of faked neurotypical behaviour for thirty years. If one person hears my words and has that epiphany too, I feel like I have helped someone start on that journey to being able to accept and love themselves anew. One of the things I talk most about is Pathological Demand Avoidance - I am PDA.

The PDA Society is an excellent resource and you can find them here.

One of my favourite things to do is spend time in mixed parenting groups - neurotypical parents and autistic parents/adults. Sometimes the discussions are hard and triggering. There is a lot of misinformation about Autism out there. Much of this comes from professionals, some who still see Autism as some sort of life sentence, who scare parents into thinking their children will suffer. Being autistic, and PDA in particular, can be hard but it's far from a life sentence and that person/child hasn't died. Learning how to support autistic people effectively to be themselves is paramount in acceptance.

From the autistic side (and I am a parent too), it is hard to tell parents they are doing things wrong because I see their good intentions, I see their desperation and I was like that too before someone took me by the hand and said 'Hey, look at this' and the pieces started falling into place. Realising that some of the mistakes you may have made have caused your child trauma is so difficult, especially if you were following the advice of professionals, of people you trust to know what is best. I have made the mistake of placing blind faith in what I was told and I paid the price of having to spend over a year rebuilding the trust between my daughter and I after a lot of school trauma. I've cried outside of shut doors, I've cried in the bathroom alone, I've wanted to run away because you're so far down in that hole, with a child in crisis, nothing anyone says works, there's little medical support and you don't know what to do. I thank the universe that some wonderful autistic people came into my life and helped me. Now I try to pay that help forward. I don't pretend to know everything, I'm just a very small, very opinionated cat-person who has little impulse control when responding to posts and a deep deep desire to help, to give back, to offer that hand to someone. My need to understand myself turned into a special interest that gives me the drive to keep engaging. The second it becomes something I have to do rather than want to do, the passion will be lost.

The facebook groups I have found most helpful in my PDA journey are as follows:

PDA Pathological Demand Avoidance Families & Practitioners

Free PDA

The PDA Parent Space

Plan B for PDA

The SEND VCB Project - Support Group for Families

I have spent hours in these groups, I don't know how many. I've done good things (I hope!) and there have been times I have been wrong but I've always tried to keep learning. For all the support I offer, I receive it back too, and in the past year, with much much encouragement I started writing and had my first article published in a small USA magazine. Be sad and angry at the struggles we face in this world, but don't mourn who we are and will always be. I followed this up with my second article 'For the love of Roleplay' and you can find this under my author page.

This year I helped found a small South West UK PDA-centered Parenting group alongside another wonderful autistic friend. Autistic friendships can be funny sometimes. I have only known Tigger for about 18 months but it feels like we have worked together forever, trying to help spread the word about PDA and improve the educational system's awareness of PDA and how best to manage those folks they may encounter. If you live in Cornwall, Devon or Somerset and you are PDA or are a parent/carer of a PDA person, please come join us.

I don't get paid though it's really nice when I get donations on my Ko-Fi page as it does give me a little thrill each time, that someone is seeing value in what seems to be the meandering sermons that erupt from my soul. Imposter syndrome is something many autistic folks struggle to deal with, often as a result of the years of feeling not up to scratch and invalidated. Being late-diagnosed, I still sometimes think 'well am I actually autistic... I was missed all that time...' and the circle of doubt begins.

My latest projects are actually getting around my own PDA and loathing of paperwork to volunteer properly with the PDA Society and I'm tentatively writing a book. It will probably never see the light of day or actually be finished but you never know.

This is not my job. This is my life. This is my calling, and I do it for love.