April was Autism Awareness Month and boy have I been doing my bit but I have no intention of stopping now just because it’s May and neither should you! 🙂
We can only affect change if we stand united and demand it, pardon the pun there! 🙂 You see, I dream of living in a world where when you tell someone that you have an ASD they don’t automatically look at you with the “oh poor you” or “her IQ must be lower than normal” expressions. I dream that people won’t react with over the top shock, followed by “wow really?” comments because yeah I really made it all up for a laugh! I dream that one day people won’t react at all. They will just accept it and move on, like they would if you told them you had a cough or something. I’m not here to be pitied or made to feel like a lesser human being. I am me. I have an ASD. Nice to meet you. Simple. 🙂 Oh how lovely would that be?!! 😀 Unfortunately though a world like that is a long way off so in the mean time I am more than happy to tell my story to anyone who will listen and I’ll even tell those who won’t listen! This change that we all want so badly isn’t going to happen by itself – we do actually have to get up and make it happen! 🙂
So what have I been doing to raise awareness of PDA? Well for starters myself and Paul joined in with The National Autistic Society’s Onesie Wednesday and donned our respective onesie and pyjamas and braved a shop in Tesco! (pictures below!) So far Onesie Wednesday has raised over £40.000!!! It’s lovely to think that we were a part of that! 😀
My birthday was on the 7th April so I made a few adjustments to my Amazon Wish List to reflect that it was Autism Awareness Month. 😀 I’m still wearing my wristbands proudly. 😀 I haven’t started the book yet but I hear that it’s a brilliant read so I can’t wait.
I also sent out a press release sharing my PDA story to all the national newspapers and a few select magazines. Sadly, to date, no one has responded but I’m not letting that get me down – I will just have to email them all again and again and again until someone notices and responds. I will not give up!
My dear friend Jane Sherwin has been a busy bee and has been creating some very good PDA information cards which she invites you to use. You can see them all by visiting UnderstandingPDA, where you can also download and print them.
The PDA Society will be holding a Q&A session on the 15th May as part of PDA Awareness Day. I will be one of the panel, alongside Phil Christie, Pat Smith, Ruth Fidler and Jilly Davies. If you would like to submit a question you can do so here but you only have until the end of today (8th May) to do so.
More recently I emailed Phil Christie from the the ENC regarding my offer to help with research and studies into PDA and also about my becoming a speaker at PDA conferences. I have sent similar emails before to those involved with current research but I’ve never had a response but this was the first email to Phil. If I’m being 100% honest I wasn’t expecting a reply and I certainly wasn’t expecting the reply that I received! He has asked if I will meet with him and a few others and asked me if I would put together an outline of what I would talk about if I were to speak at a conference! I’m stunned! All I was really asking him to do was to help by forwarding my email on to others as I figured it might carry more weight if he forwarded it on seeing as I hadn’t got anywhere myself but I never expected any of this! Amazing! 😀
A friend of mine, and fellow member of the Adult PDA Support Network, has just had her story published! Autism West Midlands have brought out a lovely little book on the stories of 15 women on the Autistic Spectrum. 😀 You can order your own copy of Ultraviolet Voices here
There is also a petition to get PDA recognised in the UK medical directory as a specific, diagnosable condition ending the current and unfair postcode lottery. You can sign the petition here
And finally, I am delighted to announce that a member of the Adult PDA Support Network has been diagnosed with an “an Autistic Spectrum Disorder, with behavioural characteristics subjective of Pathological Demand Avoidance syndrome” – utterly brilliant! 😀 Lets hope that this is just the start of adults finally getting the care and support that they are entitled to! 😀 It’s about bloody time, that’s for sure! 😀 She is also a blogger and you can view her blog here
So the long and short is that it’s been a very busy month in PDA land but it’s been a month of change. It’s strange but it feels like there has been quite a shift in things. I think a big change is coming. 😀 I’m feeling very positive about things at the moment. 🙂
I really do believe that I have a duty to help others, after all I’ve been blessed with the gift of the gab! 😉 All I want to do is raise awareness and to educate. It really is that simple. Ask me questions if you have any – I promise I won’t bite! 🙂
For more information on PDA, links, resources and support please visit The PDA Resource