Celebrating the PDA community – stronger together
The theme of our first ever PDA Society conference was ‘Stronger Together’. This term is widely used but never more aptly than when applied to the PDA community. So this is a big shout out to all the people who are making a really positive difference in the PDA world … as they say at award ceremonies, in no particular order …
Professionals – thank you to the many professionals – multi-disciplinary diagnostic teams (including psychologists, psychiatrists, occupational therapists, speech & language therapists and paediatricians); education professionals (teachers, SENCOs, teaching and learning support assistants and educational consultants); social care professionals, counsellors, therapists, trainers, parenting coaches and others – who go the extra mile to understand this so often misunderstood group of autistic people and their families. Thank you to the PDA Development Group for helping to raise awareness, increase acceptance and promote helpful approaches. And thank you to all the professionals who speak and run workshops at our conferences.
Researchers – thank you to those who have explored, and are exploring, the PDA profile of autism. We need so much more research to enable this group to be better understood and we hope our Being Misunderstood report and the research meeting held in Jan 2019 will help identify research priorities and attract much-needed funding.
Writers – thank you to all those who have written, and are writing, books and articles about PDA; to the increasing number of bloggers and those producing invaluable resources about PDA; to the parents, PDAers and teachers who are willing to share their stories in case studies to help others.
Campaigners & fundraisers – thank you to all those who raise funds for the PDA Society, we literally couldn’t do it without you as the charity is volunteer run and led and receives no statutory funding. And thank you to all those working to raise awareness and increase acceptance of PDA, including the PDA Action team.
The parent network – thank you to all those who support one another on the PDA journey, whether informally or through support groups or online, you are a true lifeline.
PDAers – thank you to the PDAers who are such great advocates for PDA and generously share their knowledge, experience and advice (see below for some positive snippets :-)).
PDA Society volunteers – our charity is entirely volunteer run by a very small team of very dedicated volunteers who freely give their time, energy and expertise to help others on their PDA journey – you have helped so very many people! Thank you also to those who have provided services and skills free of charge to help the PDA Society.
Adults with PDA talk about the positives …
Most of these were mentioned as part of Dr Judy Eaton’s talk at our 2018 conference, others were sourced in the PDA Adults Facebook group.
“The positive aspect of PDA for me is the strong sense of belonging I feel with other PDAers and the freedom it gives me to say no, not your way, I’m doing this life thing in the way I want to without feeling ashamed or guilty. I just can’t help it” – Dianna
“I realised I also have PDA after having my daughter assessed. Having confirmation of this was the final piece of the jigsaw puzzle I felt I’d been doing my whole life. I’ve used my diagnosis and my knowledge about PDA, both as an individual with PDA and as a parent of a child with PDA to move forward and complete my training as a psychotherapist with the goal of supporting other families“ – Anonymous
“I am self-diagnosed ASD and PDA. The realisation came when helping my sons through the process. I had the same ‘light-bulb’ moment as many when reading the list of PDA traits. I see the traits as double-sided like a coin with a good and a bad side e.g. contrariness and vision, stubbornness and determination. I’ve spent my whole life viewing myself as bad but can now flip the coin and see some good (half of the time), be kinder to myself and stick two fingers up to the world with pride rather than in anger and frustration!”. Sarah
“Relating to topics and discussion and banter in this group (an adult PDA support network) has given me an understanding of who I might be and how to move forward. You don’t need a diagnosis to know you have a difference” – Deedee
“I actually enjoy having PDA most of the time and I see it as a unique gift. It hasn’t always been that way of course – many struggles along the way but with support I made it through and learnt a lot about myself too along the way. When I was diagnosed at 12 I was given an outreach worker by social services. It was this lady’s job to take me to her house in the country once a week and teach me to open up and express myself but also to give my Mum a bit of a break. Her training was play therapy for abused children if I remember correctly, anyway, she taught me that I was good and kind and that I was OK. She also taught me to cook, bake sew and take pride in myself and my achievements. I’m still in contact on a personal level with her to this day – she’s very special to me. I don’t think I can say too much on just what the right support means, even if that’s just one day a week for five hours, it will make a difference. That lady gave me a special gift: self-confidence when I needed it most. That’s what we all need really, the right support from people who like and understand us. I could always see right through people who were really doing their jobs and perhaps didn’t understand PDA that well and I still can. I tend not to react well to these people, I clam up and refuse to engage, this is why I believe that not only is the right support vital but also the right people giving that support – I don’t think you can have success with one without the other. Life now isn’t all rainbows and kittens, in fact it’s hard but I’m happy. I have great support from my partner and a good network of friends too. I’m settled and I’m continually learning about myself and my PDA. I don’t have support from services so it’s my job to keep up and support myself, hence the constant learning. I’m also very proud of my crafting and baking and having created the PDA Adults Facebook page!” – Julia
“The thing that helped me most was finding out that I’m autistic and have PDA, that was the biggest help. However my best friend growing up was always there to guide me, in a fashion she helped me to navigate socially and was always there for me. A teacher in primary school was also the only adult who stood up for me against the bullying that was going on, although I didn’t know that I had been bullied until she pointed it out. I’m not sure if that was much help but her heart was in the right place” – Riko
“As an adult, finding out first about my autism and then my PDA has been life changing for me. The awareness has made sense of my life and enabled me to set myself achievable goals and fulfil my potential. Prior to knowing about PDA, I always believed I should be able to achieve the same as my peers e.g. be content as an employee and conform to social expectations. Now I understand my limits, that my demand avoidance and other issues impact on my ability to be an employee, I’m actually achieving loads. I was recently commissioned to design a logo for an African tribe and my illustrations will be included in the book being published worldwide next month” – Sally
“My Mother and her Mother, my Grandmother, both special-ed teachers in their day gave me always the space I needed to be myself and to make my decisions on my own. I was blessed with them having that confidence in me. If I needed a break from school, if I needed time to rest or go upstairs to dream and write poetry, I had it without question, ever. I’d never thought about this level of support until I realised other didn’t have that freedom. The self-directed outlook I was given enabled me to dedicate myself to a special interest at a very early age -I learned American Sign Language at 11 years old. Never realising after teaching at deaf schools and attaining an MA in linguistics and research in the field, I would lose my own hearing – intuition is a gift I believe we are given and it can play out in so many unexpected ways. I’d never of been able to experience it without the complete freedom I was granted by these two lovely women, my Mum and Grandmother who were influenced by my Irish Great Grandmother, the first female to graduate WI Teacher’s College in the US. Freedom leads us to discern what is right for us as individuals” – Kiki-Marie
“I spend my career and my free time working with/fighting for those who are struggling. I’m hugely empathetic and have a really strong sense of justice. I’d share my last quid straight down the middle with anyone who needed it. I can apply my researching brain to literally anything and get a good enough handle on it to work with. I feel a lot of fear but it doesn’t stop me. I have a ridiculously high standard for the stuff I create professionally, to the point where people think I’m weird to be so passionate. I had no idea these were all PDA traits.” – Bonnie