Autism awareness month

April is autism awareness month.

Now, as a parent with a child on the autism spectrum, I am supposed to be really glad that the word is getting out there, and I am.

However, Dinky doesn’t have classic autism or aspergers, and you would be forgiven for thinking they were the only 2 types of autism there was, as the big autism charities only ever mention them.
When people ask about her ‘I am not naughty I have special needs badge’ or her additional needs comes up on conversation, they ask… “What kind of additional needs does she have? I say PDA, 99.9% of the time the response is “what?”
So I have to explain that it is an autism spectrum condition, the first response I get back is generally “she is very sociable”. This exact thing happened today on the train.

Yes, Dinky is sociable, she will talk to pretty much anybody, especially children, but she has NO idea about proper social interaction.
If someone talks to her she will quite happily give them a very long monologue about lego, her 2DS, our latest day out, or whatever pops into her head. She doesn’t generally let someone else get a word in edge ways. She has no idea how to play with her peers, she uses them as characters in her games, and can’t stand it when they don’t behave how she thinks they should in her mind. She is unable to allow anyone to have any control of conversations or games. But yes, the two minutes you have spent with her, you have grasped the complexity of her social ability and difficulties… Wow!

Pretty much everywhere we turn people have not heard of PDA.

The main reason as I said earlier, is because the main autism charities do not mention PDA at all when awareness is concerned.
The national autistic society are probably the worst for it, most places have adapted to the autism spectrum, which would include PDA, but NAS (the shortened name for national autistic society), on every we page and every press release, and every thing that comes from them always mentions Autism and Aspergers.

Part of this, I am assuming, is because PDA is not in the diagnostic manuals. Although how will it ever be if everyone pretends that there are not children who fit this criteria and the condition is part of the autism spectrum. They have relegated PDA to the related conditions pages, where they then say it is increasingly recognised as part of the autism spectrum, and they list the reasons that a diagnosis is essential for someone with PDA.

They are not alone though, a well known autism campaigner in the uk doesn’t mention PDA when they mention autism and Aspergers.

Last night on the BBC there was a Horizons show called ‘living with autism’.
They had a severely autistic man, a savant, and many high functioning autistic and Aspergic people on the show. Did PDA get mentioned? Nope, even though they talked about research into autism and talked about new statistics and studies, it was not.

As much as this thoroughly annoys me, today is onesie Wednesday, and I pledged to do my bit for awareness and raising money for NAS.

I spent ages making an A4 poster to put on our onesies, and little cards with the details of onesie Wednesday on one side and PDA on the other.
I planned to take dinky to town and then to soft play, but this was not in her control so she chose to go to London instead.

Last night she was very anxious, and didn’t understand, no matter how hard I tried to explain it, what we were going to do and why.

This morning was like trying to get her to school! She refused to come downstairs, and then refused breakfast, refused to put her onesie on and definitely was not wearing a sign nor having her picture taken!
She went in her Tent!
I left her to calm down and process it all. Eventually she got dressed into her onesie, but it was one baby step at a time.
I have likened Dinky to this before, but again it reminded me of the Big Bang theory, when Sheldon started doing random experiments and refusing to apologise in order to go back to work, he was angry that Leonard called his mum so was in his room. His mum cooked his favourite, and left it on the side… They watch Sheldon go to the food and Leonard goes to talk to him, but the mum says “don’t, you’ll spook him”, ignoring the advice he does it anyway and Sheldon grabs the food and runs back to his room!
This time though I was careful not to spook her or talk to her. I knew she wanted to do it, and I had to try not to make it an expectation that she do it, or demand that she did.
Eventually she was in a onesie, with a sign, and had her picture taken to be shared on my Facebook for awareness!
She did really well for most of the day, she still needed to be in control of everything, however that is just not possible when relying on public transport and stock in shops or on stalls, or just when time was in short supply.
She gave out some cards, and posed for more pictures. Had the odd mini and one major meltdown, all more awareness 😉 lol
On the way home she was spinning at every opportunity and was playing the mirror game she did at school, where she sits opposite and copies all movements.
She was very good, she did get a bit hyper and silly towards the end of the train journey, but nothing I’m not more than used to and that I don’t care what anyone thought of.

Once home she was happier.

I wasn’t. I shall explain more in a blog post tomorrow, but it concerns the CDC and diagnostic process.

I was thinking about the horizons programme last night and thought about the tests they did…

Dinky was upstairs and I set up the Sally and Ann test, turned the sound off the TV and asked her what the triangles were doing, and recreated the boat in the box.

It was very interesting.

She failed the Sally and Ann test (or wyldstyle and emmet lego test!), had no idea what was going on with the triangles, and thought they were fighting, but passed the boat in the box, which didn’t surprise me as she does mirror people, and I think she was taught to via the mirror game she said she learnt at school.

My hope is that I raised a little awareness for autism, Aspergers and PDA, plus some money for NAS.

I really hope by the next autism awareness day that PDA gets more recognition.

For more information on PDA please visit
http://www.thepdaresource.com

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One thought on “Autism awareness month

  1. A great post DM and you make a really good and valid point. The side lining of PDA to the related disorders section really naffs me of too. Especially when they are so supportive and vocal at the pda conferences supporting the fact that pda is a definable sub group. It seems to be that they are afraid of tying their flag to the pda mast until more research has been done. It is so annoying and a worthy cause to get them to change the view that they paint of where they officially think that PDA sits. While behind the scenes they are undoubtedly receiving speaker fees and so on from backing PDA at the conferences xxxx

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