My photos by me aged ten years old

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Heres my list how to cope in a restaurant, by me and I have autism, so I should know.
1) Tell the adults, if they have to take you to a boring restaurant, only to take you at quieter times of the day or early evening
2) Take your Nintendo or Gameboy, but you will probably have to have the sound off
3) Make sure your table is near some space incase you need to get up and move around
4) Adults need to trust us to be able to spend more time than normal in the restaurant toilet.
5) If you like cameras take one with you, because it helps my mum to use my photos for a timeline when we next go back there, oh but remember, you wont be allowed to take pictures of other people eating there, but I don’t mind because I don’t like their faces anyway
6) If you like drawing or reading, do that instead, I don’t because I can’t read and only started to draw
7) You could take your headphones and music, that way you wont have to listen to the jumble of noises
8) Eat quickly, but doesn’t always work because some adults eat slowly
9) I don’t really like pudding but I do like ice-cream, so at least that’s good
10) If I let the adults have their boring restaurant time, when we get home I can have my time watching what I want and they have to do what I say

So follow my tips and hopefully you will go somewhere nice, not too crowded, with friendly people, that have nice food like pizzas or my other favourite is spaghetti bolognese. Happy eating and happy WORLD AUTISM AWARENESS DAY #WAAD #ASD #PDA

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Quirky quotes from my son

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New quote 04/01/2013

I was talking to my son about his birthday which is in a few weeks, and whilst describing my friends son to him (who is also PDA/ASD) He said to me, “Oh if he is sort-of autistic as well, then does he have a TV in his head as well, like me” I asked him if he could tell me more about what it’s like to have a TV in his head; he looked at me with a blank expression, said “Well it’s like as if I have a TV in my head like I said” – so I asked him, “What sort of things do you see on your tv?” He was getting agitated with me and lastly replied, “That’s how I see everything, I’m not talking about it anymore”, and he walked off.

I feel as if I have suddenly been given a tiny glimpse through a window into his world within his head. He has speech, language communication disorder (possibly dyslexia). He takes time to process information, is this because he interprets them into pictures first, and when he suddenly recalls an incident or something which happened over six months ago is that because an old movie suddenly replays in his mind, he can often describe it in such detail as if it has just happened. He’s such a complex child and so fascinating to listen to and learn from.

 

New quote 01/01/2013

So what did new years morning look like for you?

In this family, we laid in bed till 11:00 (wonderful), my son and I had a tickling fight (which he won :-), then he randomly says, “Are we real mummy, or are we puppets being controlled by someone in the sky with a big remote control?” –  I said, “What makes you say that?” – “I just want to know if we are real or not, because I think I’m being controlled differently” – I replied, “I know we are real, because our hearts beat and we feel emotions, like happy and sad, we can control ourselves, but sometimes it can be very difficult”.

He then went downstairs got angry playing on his Wii and almost stuck his foot through the TV, then told me and my daughter to f..k off, stomped upstairs, slammed a few things around, then within three minutes came back down stairs, said “Im sorry I love you”, we had a big hug and all ate pancakes for breakfast; LOL 😀 Happy New Year everyone – Glad to see the sun shinning xx

Quotes: 2012

At the weekend my son said to me, “I just want to get off this f—ing world and go sit on a cloud with God”. (We aren’t religious). Sometimes it feels as if he is given to me on a temporary basis to lift the eyelids of those with narrow vision.

Other quotes… “Why did that boy call me a cant? Who is he to say I cant, I can do whatever I want” (Thank goodness he didn’t pick up on what the boy was really calling him!!)

This last quote, is with reference to an advert on TV for ‘Mullerlight’, it’s the one where the women are chatting and have bodies of horses, one of the women says to the other, ‘well cant stand around all day chatting, must dash’ To which my son said, “Why did that lady say moustache? she doesn’t have a moustache” – When I explained to him she meant she has to leave in a hurry, we both rolled around in laughter… funny moments to treasure xxx

I’m just wondering…

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What Im wondering is why so many professionals say PDA is not medically recognised… How many doctors/professionals have heard of PDD-NOS or ‘Atypical’ instead, because if they have, it may be a better starting point of discussion with the so-called professionals who dismiss PDA, or haven’t heard of it. It may (or may-not) help to explain that PDA is a sub category of PDD-NOS. PDA is not a new label but a signpost which better explains the child’s condition. It is a developmental disorder but rather than calling it NOS (not otherwise specified) or Atypical (not typical of meeting all the criteria of autism), both of which are undescriptive and confusing titles. Elizabeth Newson tried to give a clearer profile to this group of children. BUT, but, but, the problem I see today is the confusion continues surrounding the identity of the dx of this group. From what I understand, depending on where you are in the world, these children might be described with or without a statement as any of the following… Atypical, PDD-NOS, Attachment Disorder, Oppositional Defiance Disorder, Conduct Disorder, XXYY, Childhood schizophrenia etc. The argument seems to be “Well, it doesn’t matter what the label is, so long as they are getting the right type of help”. Possibly true to some extent, however in my almost 10 years experience, from what I can tell, the majority are not getting any level of help and the ones that are, many of those are receiving either the wrong kind of help or a make-shift type of help, and because of possible overlapping conditions, the type of help given must be specific to their individual needs. Certainly across the board there is a huge lack of consistency, accurate public information, research and resources with excessive amounts of parental blame, misunderstandings, ‘I know-best’ attitudes and professional bad guidance. Image Smile

NAS Spectrum Ball, 1st Oct 2012, Jumeirah Carlton Tower Hotel, London

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NAS Spectrum Ball on Monday night was a fantastic evening – Wonderful atmosphere, lovely people, scrummy food, too much wine, live+silent auction, entertainment was outstanding. I went along to represent all those children/adults on the autistic spectrum with PDA. Helps to remind people that autism is not only about Aspergers and Classic – Nestling between the two is PATHOLOGICAL DEMAND AVOIDANCE SYNDROME. The Supremes filled the room with motown memories, and later ‘Stopped in the name of PDA’ for photos to help raise awareness. With love and thanks x

STOP in the name of PDA

Spectrum Ball – Savoy Hotel London – Monday 26th September 2011

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National Autistic Society

This year’s much anticipated Spectrum Ball will be held on
26 September 2011 in the magnificent surroundings of the recently re-opened Savoy Hotel.

7.15pm – 1am  Champagne, dinner, auction, music, dancing – Join us :-> x

Synonymous with sophistication and elegance, The Savoy will play host to an
evening of fine wine, sumptuous food and world-class entertainment.

To enquire about this event, find out about sponsorship opportunities or to
donate an auction prize, please contact Victoria Marshall by calling 020 7903 3590 or emailing victoria.marshall@nas.org.uk

What a fantastic evening, truly one to remember. Well organised, great food, incredible music by Spandau Ballets Tony Hadley, and loads of money raised for autism research.

I spoke to many there who knew or were involved with autism, but as always had never heard of Pathological Demand Avoidance Syndrome (PDA).  I wore with pride my PDA t-shirt that my son had drawn and was able to speak with Tony Hadley about PDA, he showed genuine concern and agreed to photos to help our plight – Very much appreciated.

With thanks to Tony Hadley for listening