Our PDA Story {Week 46}

A few years ago, I started a series called 'Our PDA Story' on my blog. The aim was to share experiences of lots of different families living with this little-known profile of autism called Pathological Demand Avoidance. I've been writing about my own family's life with PDA for over ten years now, and I know (from very kind comments left on my Facebook or Instagram pages) that there are lots of parents who relate to situations we have faced over the years.

So I'm very aware that there are many other families out there having similar experiences. I wanted to use this series to spotlight the challenges and help others to understand that there are many similarities and characteristics shared by those with PDA, it's not just about our girl. We need more understanding for all those in this situation - PDAers themselves of course, and most importantly, but also parents, siblings and extended families.

I'm delighted to say I'm bringing the series back. Some kind people have agreed to write and share their 'stories', starting this week with the mother of a now 14 year old boy.

If anyone else thinks they can help by sharing their own experiences of PDA, please do get in touch with me at stephstwogirls@gmail.com.

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Hindsight is a beautiful thing! If not on occasion, extremely frustrating. When I look back and reflect, I have to remind myself not to get sucked into the thought train of ‘if only I knew then what I know now, how different my son’s life would have been'.

My son was 7 months old when I first noticed an extreme behaviour. My daughter was 5 and a half and I’d managed to wean and breastfeed her with no real issues (other than the initial excruciating pain!). One morning he simply refused to feed. He didn’t want me, and he wouldn’t take a bottle or water or anything. He just screamed and screamed and appeared to be so agitated. He’d otherwise been a happy and content baby, and this was not like him at all. At the time I was fraught with worry as my only real job then was to ensure my baby was being fed properly. We rushed to the health visitor and in the end managed to get water down him with a teaspoon. After two weeks of stress and panic we managed to find a cup he would drink from and things returned to some form of normality. I wonder now if perhaps I’d eaten a strongly flavoured food that disgusted his delicate and hypersensitive taste buds! Or perhaps he noticed a hormonal change that led him to knowing it was time to stop breastfeeding. I’ll never know but that was the beginning of our issue with food and what we now see as ARFID. (Avoidant/restrictive food intake disorder).

By two years old we had been to see a consultant paediatrician about our son’s lack of interest in food and the battle we seemed to experience at mealtime. He was happy with his finger foods and certain textures but oh my word if he didn’t like something it was not going anywhere near him. It’s not that he wouldn’t try, it’s just that certain textures would get to a place in his mouth and he’d simply gag and reject anything that wasn’t to his liking. As a mum I placed all my faith in the doctor we saw who listened intently to my concern. He observed us intently and after a moment or two of silence whilst he was evaluating us he simply looked at me and said “It’s a behavioural issue and you just need to be firm and consistent. Don’t give him a choice and he’ll soon learn he can’t get away with it.” End of appointment! Discharged.

I was left feeling like a failure and even a little ashamed, empty and lost that this all-powerful consultant had passed on this wonderful nugget of wisdom which meant absolutely nothing and was possibly one the least helpful meetings and waste of my time I’ve ever experienced. Oh no wait, there’s so much more of that later on when we spent hours and hours filling in forms and talking to CAMHS and begging for help to be told there’s nothing anyone can do or “you need to see your G.P.” who in turn will say “well no it’s CAMHS” who in turn say “well no it’s a school issue” who in turn say “well …”. And so on and so forth until you’re literally spinning and getting quite dizzy on the merry go round of trying to seek some sort of help for your child.

I don’t really want to write about my negative experiences of the ‘system’ that’s failing our children. The plentiful and incredible online support community that is ever expanding is testament to that and everyone has their story and their frustrations. It’s no one persons’ fault that getting an appointment can take so long or that when you do you are simply sent back to a different department because in the 13 months you’ve been waiting to see CAMHS they’ve set up an autism specific pathway so you need to wait on that list now. The fact that the same people who assessed your son when he was 8 and told you quite abruptly he wasn’t autistic but had anxiety, are now saying oh yes he is autistic and you should do this, this and this and we won’t see him now because his issues are because of autism not mental health….. We all know how frustrating and exasperating it is. Especially when you sit there being made to feel like a complete imbecile as a parent and the subtle underlying suggestion at times that you are simply not ‘parenting’ properly or in the right way.

I do want to talk about an incredible young person who during his 14 years so far has struggled more than I could imagine and had to scream and shout in so many different ways to try and communicate to us that all he needs is our love, support and understanding. It breaks my heart that it took me so long as his mum to learn to listen properly and really hear him. It’s so simple at the end of the day, yet we have complicated everything in our own selfish desperation to try and make him meet our expectations and those of the society around us. I want to scream out loud to all the parents out there with these precious and incredible young people to just stop everything you’re doing and get alongside your kids and just love them as they are and for who they are. I found myself telling my son recently when he couldn’t sleep and he was feeling bad and thinks he’s a pain because he’s always keeping me up at night, “it’s ok because I was made to be your mum and you were meant to be my son because I don’t mind being kept awake by you.”

I have learned to find ways to talk to him in a way that reduces his anxiety. I used to simply place my expectations on him and talk to him in a way that simply communicated my frustration. This compounded his low self-esteem and escalated all the issues we had as a family and resulted in a very unhappy, anxious child with violent and challenging behaviour. Through the help and support of learning from others about their PDA experiences we now have a child who may not yet be as happy and content as we’d hope him to be but he’s safe and we are rebuilding the love and trust that he should have had all along. We may have failed in some areas as parents because we simply didn’t understand his needs. We had no idea what PDA was and knew little about autism until a couple of years ago but the more we learn we see the perfect fit for who our boy is and how we must adapt his environment and our way of thinking in order to help him thrive.

Our son was finally given a diagnosis of autism in the December after he turned 13. He was in year 9 at a mainstream secondary school and had managed to accumulate 563 ‘behaviour points. Not for good behaviour but for bad. The list of misdemeanours which I now know were simply his cries for help still sit on my phone in an app, a constant reminder to us of how we aimlessly continued to try and force him to fit into a world that didn’t cater to his needs. Those first two years after transitioning to high school were probably the worst for all of us as a family but certainly extremely traumatising for our son. He may not see it this way now because he doesn’t really like to talk about it and believes he was just being naughty because he wanted to be. When I look through the behaviours and detentions given all I see is a child trying to escape or ‘flight’ from different scenarios and situations in order to attempt to regulate and remove himself from what he perceived as danger, a threat or where he simply didn’t understand what was expected of him. Other times his ‘behaviours’ were reactions to situations. He mimicked the actions of others in order to fit in and be part of something and sometimes he felt he had to fight. He was trying to fit in with peers who were all experiencing similar feelings and were unable to express themselves therefore ‘acted out’. Perhaps if the system adapted and changed a little more, we would find these children’s behaviours changing too.

Our son is now 14 and heading into year 10. He’s supposed to be starting GCSE’s. He hasn’t attended school for nearly one year and according to him he has no intention of going back. Before Covid and lockdown he had wanted to go back at times. Not to learn as he feels he cannot learn in that setting, but to see his friends. More recently he has become agreeable to the prospect of online learning so via his EHCP (Education Health and Care Plan) we are hoping to get some form of EOTAS (Education other than at school) in place. I would home school and have done in the past but he surpassed my ability and those around us a long time ago. Plus I’m terrified we’d get no support and also why should he miss out on access to an education just because there’s not much in my local offer that meets his needs (that’s a whole other story). As a child with a PDA profile of autism he learns extensively through his own experiences and he has a wealth of information at his fingertips so we are learning to trust him and his own ability rather than attempt to make him learn something he sees no purpose to. For us this is working well.

PDA has undoubtably taken over our lives in the past few years and I will be eternally grateful for this. It may have been hard beyond belief at times and I will admit I have balled my eyes out uncontrollably in meetings with school and the LA unable to express myself through the sobs. The language that used to be banned in our house is now commonplace and it’s ok, it’s just words, and quite cathartic when screamed out loud in the car with music playing. There are dents in our walls that act as reminders of meltdowns and the times before we knew how to see triggers and realise what was going on. But… my vocabulary in the world of SEND law has grown extensively, and I am now part of a world where I see that it is my job is to fight for change within our current system. To speak out where I can and use what I have learned to equip and empower other parents who are going through the same.

I will begin my role as a volunteer on the tribunal helpline with IPSEA charity in September and I’m part of a campaign whose aim is to bring about a more nurturing national curriculum (the National Curriculum Crisis campaign). I also love my role as Send link governor at my local high school and parent support when I have time. As mum I have accepted my role as parent carer and not just parent and every day I meet new parents who inspire me and remind me I’m not alone. I have new friends who just get it, and old friends who are learning to be more understanding (and friends who aren’t really friends anymore because you realise they’ll never get it!). I watch with awe and wonder as my son surprises me with his incredible mind each and every day and brings joy and laughter with his wit and humour. I know we have a long way to go but we take one day at a time.

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Thanks for taking the time to read. Comments are much appreciated, and sharing on social media could help get these posts to people who have still not heard about PDA. The PDA Society website has a huge range of information about Pathological Demand Avoidance.

For more reading about what Pathological Demand Avoidance is, please see my page 'What Is PDA?', and for an idea of how to help please read Strategies For PDA.

Sometimes PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a definite difference between the two conditions. My explanation can be found here in my post the difference between PDA and ODD.

A variety of other experiences of living with PDA can be read using the link Our PDA Story series.

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.