Our year continues with more trouble in school. Nemo still has daily support (the new aide is kind and calm) and they have now been willing to trial a few preventive solutions I have put to them (quiet lunches, respite days), but his current reflex to swear and get angry (at least that’s what it looks like) in situations of stress, is taking a bit of a toll on the ‘support team’. On me too, to be quite honest, but since things are rather chill at home in terms of expectations and environment, I simply do not have the Rumpelstielzchen experience on a daily basis, and there is only so much I can do when he is in school. Needless to say, that we do NOT swear like sailors at home, we do not condone it at all and I understand the school has to draw a line…But I still believe that the use of swearwords in moments of distress does not prove he is making the conscious choice to be ‘naughty’ or whatever?! Will be really thankful for any input…
I am never sure what to think of those statements or thesis where divers great figures of history are post mortem diagnosed with autism, or any other condition only known and researched during the last century. I am sure you have seen these and other examples, too. I mean, I believe that there was autism all throughout history, and I am not saying that some descriptions by other people of the time do not sound like at least autistic traits in some of the personalities. But without knowing their exact circumstances and what else could have caused similar behaviours, a post mortem diagnosis can only be speculation. Yes, I guess it feels good to point out these people (..all men?) as examples how greatness has been achieved in spite of – or was it because of – their autism, but although my son has a clear preference for science, at the moment, our main goal is really a happy life of acceptance and fulfilment rather than putting the pressure of outstanding achievement or talent (in whatever) on my son.
As I said before, I do not believe in this one “autism community”. It’s ok for me, though, there are different groups. What is not ok is that debates escalate online in flaming wars and attacks get way too personal for me to want to be involved in any discussions or ask even questions to understand what is actually going on?! I understand partly how anger and trauma can make people get more than just ‘passionate’ over whatever is discussed, but there should be no “enemies” in this debate – no one ‘in the trenches’. We are not fighting a war, are we!? We are living life with autism, all of us, in all our differences. Different lives.
Link to one parent blog from New Zealand on the subject (a blog I really recommend), another opinion from another parent here (US, a bigger blog, I believe). Also here an Update of the comment policies on “The Thinking Person’s Guide to Autism” following some escalated comment threads on their facebook page.
I am really happy to know that I have autistic adults reading and liking my comics and words here and I am glad to say I read some excellent, down to earth and thoughtful Australian (ASD) parenting blogs too, on a regular basis (blogroll soon) So Peace, people, FFS! It’s kinda important. Happy New Year, also.
I have really changed my mind about the puzzle piece since I first saw it in the context of Autism. I have read a few posts by autistic adults that clearly reject the symbolism. Read Autisticook’s post HERE, or other voices here, or here, for example.
But even without any association with the ‘big blue puzzle’ organisation, so many parents are embracing the symbol : It is present on most autism websites or blogs You can buy themed autism jewellery everywhere. And have you seen how many parents are getting puzzle piece tattoos with names of their autistic kids ? (i think this one is unrelated though….)
It may be too late to throw it overboard for this generation, but if opinions of the autistic bloggers are anything to go by, our children may grow up resenting that we allowed to stick a symbol on them that reflects our NT view of deficiency, of mystery and problem to solve with regards to autism. The fact that others rather see diversity, uniqueness and the rainbow colours of the autism spectrum just makes it more obvious how ambiguous and puzzling (!) the graphic actually is.
So, I don’t know… Are there other graphics around that are more straightforward and positive ? Should we create one ? Or does it even matter? Do other conditions have a universal symbol like this, that goes beyond the colour of a ribbon or the graphic of one organisation? I would love to hear what you think!
I believe that one way to be an advocate for my son, is to talk about his autism in a normal, unexcited way, and to all kinds of people. Without pressing it on them, without embarrassing my son but, when it fits in the conversation, you know, mention it. No big deal.
If people ask questions – great. If they don’t, ok – maybe next time.
But then, there are those people who have it all figured out : With or without Nemo present, several people have now commented that Autism is “just a label”! So what these people are saying is that a century of research, observations and experiences are…just humbug?! So it’s just a fashion; and the assessing specialists have just given some sort of fad label ? 0_o
If anything, I want my son to know that AUTISM IS REAL and AUTISM IS OK. Those people I spoke to, didn’t mean to actually insult him, or me or the gazillion of people concerned by or researching autism. But people are stupid and will say sh*t about autism, I guess..
bitstrips.com is still down, so I am using recycled pictures of me with a little logo of a well known organisation that I have changed to express what I think…
This week, after a statement by Susanne Wright, one of the founders of AS on the eve of the national policy and action summit in Washington, DC – Autistic Self-Advocates and Parents that actually listen to them, pretty much lost their sh*t. Again.
I have submitted this post to the “This is Autism Flashblog” that is happening on Monday 18th November 2013 (US time). You should totally check it out! LOTS of
great posts of Autistics, young and old, and parents who think alike.
And they are so right. I too have explored their website in the early post-diagnosis days. Their presence is not as strong in Australia, but online, you will certainly come across their infamous puzzle piece and their scaremongering, autism-hating propaganda. Fundraising, awareness raising, switching on the blue lights.. sounds good, but the reality is an organisation that has lost its way. The rejection of dialogue with Autistics apart from a hand-selected few, the ongoing painting of a autism as “an epidemic that is stealing your children”, the association with dodgy quax therapists that promote ‘treatments” that are abusive and obsolete.. It is hurtful, unhelpful and completely counterproductive to their alleged mission : helping parents of autistic children.
The first I read was a statement by JE Robison, author of “Look me in the eye” which is the first book on autism I read. And you know: After being flabbergasted that he was actually associated with AS in the past, I was GLAD to read this association was over. He made an important public statement, and so made many others, in their own way.
Ariane from Emma’s Hopebook has put together a few facts and a couple of great links in her respective post about AS this week. I would also recommend the always critical, scientific blog of Emily Willingham (who is also an autism parent). Please do not hesitate to link to other blogposts, your own maybe, about Autism Speaks.
Because no, they do not speak for us.
Autism is more and more present in the media. There are movies, tv series, documentaries of all kinds… And then there is the odd ‘autism snippet’ on news shows on commercial television. It seems they are all follow the same pattern: “this family wants you to see what their life with autism really looks like” – cue: screaming child wreaking havoc in the house. Parents talking about how hard it is. For them. Then, briefly some expert : “The causes of autism are not fully known…” (oh snap!) “..early intervention, ABA..” “high costs..” (critic of governments service schemes, ok) and THEN either “new hope for early detection” (in infants.. or before birth, usually VERY early studies..) OR – aaargh! – “the debate continues if autism is linked to [insert scientifically completely debunked autism myth here]” and maybe even room for some
self-declared expert quax to deliver their spiel.
Total time: usually less than 10 min. My personal learning experience : zero.
Effect on the broad public : Autism is mysterious and totally scary.
I have to say this first: to the big Aspie/Autism online community that is “wrongplanet.net” –
this is NOT about the perception of autistics who might find society so strange and bewildering at times, that it feels to them like they have touched down on another planet. If that is the way you want to describe it, of course I am fine with it (and sometimes feel the same btw..) But every time someone comments on an autistic child with those words, while they might be uttered with endearment and sympathy, it factually sets these children further apart from all the others. Doesn’t matter if it’s only a ‘superficial absence’ (lack of eye contact, different body language) or if they are very distracted (or stressed) by an overflow of stimuli: those kids are still here, with us. Do not exclude them, not even with words.