In Sept 2021 our beautiful boy was diagnosed with Autism aged 5. Laura and I thought this meant he would finally get support and we would be listened to on where his struggles lie. Aside from home the only other place he spent time was at school and instead of acknowledging his disability we were told ‘he is fine in school’.

TJ masked very well but the problems came out very early. With no support from school we were doing everything we could to understand his diagnosis: recommended parent courses, reading books about Autism and joining groups on Facebook.

In 2022 after a year of crisis at home from TJ’s dysregulation where he suffered heartbreaking meltdowns, lashing out in violent episodes and starting to have difficulty in attending school we referred back to his developmental Paediatrician and he was diagnosed with PDA (Pathological Demand Avoidance). This is where everything began to make sense and we really started to make the changes TJ needed to feel safe and happy.

We very quickly had to learn what PDA was and how we could help TJ and support our children.

PDA is a term under the umbrella of Autism Spectrum Disorder. But it is essentially a nervous system disability which people just don’t know much about. With thanks to National Autistic Society, Facebook groups of parents sharing their expertise and the PDA society we now understand our son lives in a constant state of anxiety. A fear level matched with the sort of fear you would feel if being chased by a lion. This causes children with PDA to either present their struggles outwardly or inwardly. Although it’s very difficult to manage at times we are so grateful TJ expresses his struggles outwardly as this is far less dangerous than the unknown depths of the other. But it means life for TJ is very tough, to protect himself - he roars and lashes out like a lion and outsiders have no idea that this anger and extreme behaviour is that of panic and fear. We understand it doesn’t look like that and why people give the looks that he’s ‘rude, poorly behaved, not disciplined’ we’ve heard it all about how we are getting it wrong and not forcing him to do XYZ.

But from throwing ourselves in the Neurodiverse world and proudly supporting TJ with a low demand lifestyle, giving him the autonomy he needs to feel safe, by silently raising awareness of his hidden disability with a lanyard worn by us and a badge worn on his top to protect him from the looks and comments about his loudness, honest and open opinions, his fast movements and his full body stims. And by fighting the education system each and every day to have his needs met and finally being agreed mainstream is traumatising and not a place for him. We are enjoying the wonder that is our son. He has an incredible mind, a deep routed intuition for good people, we relive memories in more detail than ever thought possible, we have so so much love, we laugh and we do silly but overall we do honest and trust. And our passionate, emotional and super sensitive son is much happier day to day. This is safety and when you understand your child lives with fear every minute of the day at the level of being chased by a lion believe me when I say you’d do anything to take that away and help them.

So after taking the time to learn what we have so far and continue to do daily, after changing everything about our home life that doesn’t fit the ‘norm’ of society, after moving house and relocating to live somewhere TJ can relax and feel safe and take our family out of the severe crisis we were in, now we want to raise awareness so in the future TJ doesn’t have to feel misunderstood, so people can be truly kind and non judgemental.

TJ is outgoing, adventurous, funny, passionate, intelligent, sociable and honest but he struggles with social awareness, takes everything super literal (doesn’t understand sarcasm and conversational jokes), he doesn’t yet understand his emotions or how to control them, he has hyper-mobility, his demand avoidance means he can’t even enjoy a lot of what he wants to do himself before the day to day demands of every day life. But what he needs is people to be patient, kind, honest and even in his worst moments just loving and provide reassurance. All behaviour is communication and we’ve learnt to be curious… if something is happening there’s always a reason especially when you have super senses and therefore sensory struggles.

Where the poor sighted have glasses, the deaf have hearing aids, people who can’t walk have wheelchairs, our neurodiverse boy has us for coregulation and safety.

We continue to fight for the education that will be right for him and when we get to that place we will be sharing that part of our story….

But for now I am challenging myself and showing TJ anything is possible if you work for it and put your mind to it - especially when you have love and encouragement from friends and family (which we will always be forever grateful for). So please support me with anything you can as I run a half marathon in support of the PDA society and fulfil our mission to raise awareness for everyone with PDA. Any donation big or small would be amazing. And even if you’ve read this far I know I’ve achieved a huge part of my goal before tying my running shoe laces so thank you.

Richard Chavez (along with Laura, TJ and Liliya always) xxx

#PDA

#AutismRocks