Tag Archives: autism advocacy

take a stance

_antibullyingday1

 

We saw a lot of kids and grown-ups dressed in orange today in our school, and I should not be a cynic who thinks wearing a t-shirt in a certain colour changes really not so much (there are some other actions of course..). So I won’t think that..(although a quasi-free dress day without the obligatory donation would help in an otherwise uniformed school, too..) I just think it’s a bit vague and does not go very deep. Who would be FOR bullies anyway?
There has been no ‘autism awareness day’ (acceptance/month, whatever) in the school so far, and I have been explicitly told talking about autism might lead to bullying (..?) which basically only made me start this blog in September last year.
So April is coming around and so far I don’t know what is planned, I don’t know what to think again, is it really just about donning a bit of blue and say “Autism!” for one day? What is your take on ‘awareness days’ vs actual action, information, education?
Are you doing something in April ?

(Fun fact: our school uniform is already blue!)

Repeat after me: We are ALL different.

1oneperson

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.

A little postcard from Australia!

00seasonsgreetings

Hello Everyone!
A bit paralysed by a heatwave that is hitting Queensland right now (the ‘White Christmases’ of my childhood really quite a distant dream…) I wish everybody a good holiday season. Whatever you celebrate, and how, and with who and most importantly where – all our best wishes for you and those that you love!
We will leave the ‘reflections on the year that was’ and ‘good resolutions for 2014’ to the news channels and social media outlets I think, but I do want to let you know that I feel really HONOURED that so many people are following my blog (80+ via wordpress! yee-haa!) , have commented (you know who you are !) and have shared posts (yesss!!) ! It’s a great encouragement and makes doing the comics even more fun!
Like almost everything in my life, this blog had a bit of a rocky start (bitstrips suddenly exploding via their apps and my computer being somewhat ‘unwell’ lately) but your reactions make me think that I am onto something and I really feel like I have made a few new friends!
So thank you for that, and keep in touch ! =)

Sh*t people say about autism–“it’s just a label”

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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..

It must be time for a comic on Autism Speaks

autismshrieks1

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.
UPDATE :
TIA-2 copyI 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 in the media–news show snippets

000onTV

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.

Person first language ?

 

15 person1st

Striving to use politically correct and non-discriminatory language is not a new thing in the context of disability parenting and, as with so many things, our perceptions of importance and meaning are various. I hadn’t really thought about it much, when I realized there is actually a ‘debate’ about it.. Here is a very comprehensive article by Lydia Brown about it HERE on her excellent blog Autistic Hoya.