Amazing Adventures celebrates 1000 Ausome Things #AutismPositivity2013

I've been thinking about what to write in this flash blog post forabout a week. This years flash blog focuses on all the "Ausome" things about Autism.

I thought about telling you how great my Autistic kids are because they are honest, loyal, persistent, funny, creative and brave. 

I thought about telling you that I have learned so much from them about being authentic. 

I thought about saying how cool it is to see them get involved in special interests when they find out heaps of information about different topics. 

Then I had my best idea- I thought of asking the kids what they think is awesome about being Autistic. 

MissG is 5, and she is still just learning about what Autism is going to mean for her. But I will say that both she and I think it is awesome that she went to bed tonight wearing nothing but her underpants and a cape.

MasterL is 14. He's got a pretty good grasp on how he is different from others and is developing good strategies to manage sensory issues and things he finds stressful. 

So I asked him what he thinks is awesome about being Autistic. 

To get him thinking I asked does he like being good at computer games, coming up with stories, or being good at researching to find out information about things he is interested in. 

He said yes, but that he didn't think those things has a lot to do with being Autistic. 

So I stopped talking and listened to him (sometimes I am so clever!) He thought for a minute and then he said this:

"I think the thing I like most about being Autistic is that I know I am different from lots of other people and I feel proud of who I am" 

..... I think that is pretty awesome!

This post is part of the #Autism Positivity 2013 Flash Blog in which bloggers all over the world will be sharing "Ausome things" in an effort to flood the internet with positive messages for people to find when they search for information on Autism.

Images of Acceptance

This is my last 
#AutismAcceptance post for 2013. 
I took a photo of my MissG each day this month, 
to show what her life looks like when she is accepted just how she is. 
We do our best to adjust the environment around her and 
provide appropriate supports  to meet her needs. 
We try to avoid putting her in a position where she must 
change herself to blend in and appear like everyone else. 
To us, this is acceptance. 
These photos show what accepting her looks like at our house.

1. MissG designed snow men toys and gave me the instructions to construct them.

2. Playing the drum she made

3. In her favourite pyjamas- she wore them for 3 days straight

4. Playing with the interactive globe

5. Tracing my shoes with circular counters

6. Wearing her choice of costume for the easter Hat Parade

7. Sitting on a piece of newspaper in front of the fire eating a sandwich wearing t-shirt and underpants 

8. In the cubby house she designed and helped build

9. Bouncing and playing on the Wii

10. With face painted as a dragon

11. Exploring electricity

12. Snuggled on her bed in a sleeping bag for some sensory deprivation time

13. Hanging out with her godmother

14. With her friend from preschool "E is my best friend"

15. Having a go at the trumpet with the help of a friend

16. After many years of fearing the noise of the vacuum she suddenly decided to clean the floor for me!

17. Being a "hero warrior" on her rocking horse

18. Hand washing is important

19. Watching her favourite show with Daddy

20. Peering into the fish tank

21. Making music on the wall

22. Playing with K

23. Blowing bubbles in milk

24. Another detailed drawing.... MissG does numerous pictures every day

25. Her favourite food- "bone chicken" (chicken drumstick)

26. "Kiss?".... countless times a day

27. Helping wash the car is a great excuse for sensory input

28. Another sensory game- squishy "fairy eggs"- wearing her princess cape

29. "Squeezey hugs" 

30. Bath toys line up

What does "Awareness" get us?

***I live in Australia. There are things that are common knowledge in The USA, where some of my readers, and a lot of my online friends live, that are little known here, even in the Autism Community. This post may contain information that a lot of my Northern Hemishpere readers already know, or even know more about than I do. If I have anything wrong, please let me know! I am trying to help my Australian friends discover some of the issues that exist so we can try to learn from others experiences and guard against replicating undesirable situations.

Since 2007, April 7 has been the United Nations sanctioned World Autism Awareness Day. This year, UN Secretary General Ban Ki-moon said, "This international attention is essential to address stigma, lack of awareness and inadequate support structures. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential. "

There are many large organisations that have joined the bandwagon, so to speak, and now acknowledge and even celebrate Autism Awareness Day. Some of them now run Autism Awareness Month activities, and use the time as their major fundraising event for the year. But there is a problem. You might wonder what on earth can be wrong with raising awareness about Autism and raising money to support families affected by it. On face value, the answer would have to be "nothing". But unfortunately, not everything is what is seems on the surface. To show you what I mean, we need to talk about Autism Speaks. Autism Speaks is a large "not for profit" organisation in the U.S. that instigated the "Light it up blue" campaign that many people associate with World Autism Awareness Day. In fact- the campaign has been so successful, that most people don't realise WAAD is a UN initiative. A.S uses "light it up blue" as a major fundraiser. I'll start with a quote from Nick Walker, an Autistic adult,

"Don't "light it up blue" in April!

"Light It Up Blue" is an "awareness" campaign by Autism Speaks, an anti-autistic hate group dedicated to preventing the existence of people like me.

If you take part in the "Light It Up Blue" campaign by displaying blue lights in April, or promoting the campaign with "Light It Up Blue" images and profile pics on Facebook, you're not doing anything to help or support Autistic people. Instead, you're showing support for a corrupt and bigoted organization that has a history of maligning us, silencing us, excluding us, and harming us. An organization that openly declares that its goal is to "prevent" us."

Huh? What is he talking about? A while back, I did some reading to find out what the fuss is in the Autistic community. I'm not going to spend a lot of time explaining all the reasons why I would never support AS. If you want to learn more google the phrase "what is wrong with Autism Speaks?" and see what comes up. Here are a couple of things I found when I did that search-




I found this flyer here on the Autistic Self Advocacy Network website. It's hard to read in this image, so here is the pie graph summary of who AS spends their money. .......

4% of their funds are spent on Family Services- that is the part that supports Autistic people.

44% is spent on research.... that is a worry for an organisation that openly says they are " dedicated to funding research into the causes, prevention, treatments and a cure for autism" because when Autism is a part of who you are and how your brain works, the idea of the organisation claiming to be there to support you actually wanting to prevent or cure you is pretty scary really!

Here is another link for those of you who have some time on your hands and want to do some more reading on this... https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links. There are some fantastic articles linked here that explain the controversy better than I could ever hope to.

If you would like to know what many Autistic Adults think of the organisation that claims to speak for them and claims to be there for them, read this by Alyssa of Yes, That Too.

Lastly, on Autism Speaks, if you want a really good, but short summary, The Caffeinated Autistic can help! Click here.

Now, in Australia we don't have Autism Speaks (although they are conducting research here, and did happily back up and promote the Australian organisation Autism Awareness' efforts to "Light it up blue" this year), but we do have governments that are taking away disability support funding from schools, and we suffer our fair share of what I now think of as "tragedy talk" (examples?... Autism is a Tragedy.... 1 in 88 *suffer* from Autism..... Autism is an epidemic.... etc.) Daily newspapers report sensationalist stories, fuelled by newly announced statistics, and media statements by organisations like AS. On April 2 major newspapers ran stories written by parents of "children with Autism" about how hard life is living with Autism and how little support there is for Autistic people in our country. Some of these stories I found depressing as thy just talked about the hard stuff. A couple of them were good, and it was clear the parents were attempting to put out a positive message.

But here is the problem with "Awareness": the media wants to tell the story so they can sell the story. They make people aware that Autism is hard by calling it a Tragedy, a Burden, a Struggle, and label it Heartbreaking. People will read that. The result of this is when I tell someone who doesn't actually know me or my family that 2 of my kids are Autistic they say [pause to put on compassionate face] "oh, I'm sorry. That must be hard" (or something similar). Which, although the person is responding in a way they feel is appropriate due to the information they have, is annoying because in our house Autism is not something to be apologised about.

More important to acknowledge than my irritation as a parent when people apologise to me that my kids are Autistic is this- When Autism is presented as a burden, a problem, and a tragedy the result is that Autistic people suffer.

Here is an example. On World Autism Awareness Day this year, ironically, an Autistic lady named Amanda was in hospital. She was being actively encouraged to consider NOT having a lifesaving medical procedure. You see Amanda is non-verbal and requires support to manage some of the tasks she needs to do daily so it was assumed that her life must be miserable and she would be better of considering allowing her life to end. Yes... really! Read here for more information about this situation. THAT is what "Autism Awareness" gets us.

This is not an isolated incident, either. Last year an Autistic man called Paul was denied the right to go on a heart transplant waiting list because he is Autistic. You can read his story here. THAT is what "Autism Awareness" gets us.

But that’s America you say. That wouldn’t happen here in Australia.

Really? In 2012 an English family was denied entry into Australia to take a job that had been offered because their daughter is Autistic which you can read about here. THAT is what "Autism Awareness" gets us.

In 2012 the NSW State Government removed Disability Support Funding from public schools resulting in most Autistic children in mainstream classes losing the support that was helping them succeed at school. You can read about these changes here. This change has impacted my family with both of my Autistic children now unable to receive funding toward providing them the support they found so helpful. THAT is what "Autism Awareness" gets us.

As Genral Ban Ki-moon says, "Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential. "

Here is another quote for you: ".......autism isn’t just a hole in the floor that people are tripping over, autism is a part of who we are!" That Autistic that Newtown Forgot

Autism is a neurology. It is not an illness. It is not a disorder. It is a part of who a person is. You cannot cure Autism. You can use genocide against it. You can eradicate it. But you can't cure it.

It is a horrifying thought to me that one of my Autistic children could be denied medical care that would be standard procedure for a person without a disability! It should be a horrifying thought to all of us that it could happen to anyone!

Autistic people do not need more awareness. They need people to accept them as they are, as valuable people with the same rights as everyone else.

We need to move towards acceptance of everyone, regardless of their neurology, so that all people receive the support, validation and recognition they need and deserve.

You might say that I am just arguing semantics here. I would reply that I believe there is a very important difference between awareness and acceptance because of the behaviour that results from each. Awareness results in all sorts of knowledge, whether it be fact or fiction, that doesn't actually help Autistic people. Awareness is a good start, but not a solution.

image from ASAN

Awareness vs Acceptance

Being aware of something is quite different than being accepting of it. 

Awareness- knowledge or perception of a situation or fact

Acceptance- the process or fact of being received as adequate, valid, or suitable


"Awareness says the tragedy is that I exist as I am. Acceptance says that the tragedy would be trying to make me any other way",  Kassianne of Radical Neurodivergence Speaking wrote, in an article published by ASAN. You can read the whole article here (and you probably should read it as Kassianne has been thinking about, and living with, the issue of awareness vs acceptance a lot longer than I have). You may agree or disagree with her that her statement is true. But the fact is, that all Autism Awareness campaigns have achieved for Autistic Adults in many cases is to help them feel that "normal" people see them as wrong. 

I have a 14 year old Autistic son, who is rapidly approaching adulthood. There are many things I want to help him achieve. There are also many things I want to avoid as I support him navigating life. One of the things I most want to avoid is him thinking that I believe he is not good enough just as he is. I am very aware that one day he might read everything I have written in this blog. If he does, he will see the posts I wrote last year in April for #Autism Awareness month. They were a series of Question and Answer style posts. No doubt if I were to sit and write them again now they'd be a bit different, as I have learned a lot in the past year, and my attitudes have changed in some ways. Life is, after all, a journey.

He will also one day read the things I will write this April.  He will probably notice that this year I will not be using the phrase #Autism Awareness. 

Along with many other bloggers, I will be calling April #Autism Acceptance Month.

If you have time, read this article by Steve Silberman at NeuroTribes for an explanation of why- it is long, but really, really worth it. Steve has written thoughtfully and insightfully on this topic, and includes interviews with many wonderful Autistic Advocates (some of whom I am immensely grateful to have been given the opportunity to get to know online recently). I could write pages of my developing thoughts on this topic, but it would still just be the thoughts of a parent of Autistic children, and what you really need to hear is what Autistic Adults think and feel about Awareness and Acceptance. So, please do read Steve's article. If you can't make time to read the whole article, just read the next bit here, which is taken from it:

Two years ago, [Paula] Durbin-Westby proposed that autistic people and their families and friends recast April 2 as an occasion for promoting acceptance and understanding rather than vague “awareness,” and reclaim the day as an annual opportunity to celebrate their community’s diversity and vitality. ”I started Autism Acceptance Day as a corrective to the ubiquitous negative images we see every April,” she recalls. “The first World Autism Awareness Day referred to autism as an ‘equal destroyer.’ From videos that talk about autism as some sort of soul-sucking demonic persona, to 150 empty strollers signifying that autism has robbed parents of their toddlers, navigating April for many Autistics has been like walking through a field of (stroller-shaped) land mines. No more! Autism Acceptance Day takes back April and puts it where it belongs — into the hands of Autistic people, supportive family members, friends, and communities.”

Durbin-Westby’s notion of rebranding April 2 in a more positive and proactive light is catching on with local autism advocacy groups worldwide. The Autism Society of Northern Virginia recently declared April to be Autism Acceptance Month, and other groups are getting onboard via social networks like Facebook and Twitter.

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults  – now, starting today?

That’s the question I posed to a group of self-advocates, parents, and teachers that included Nick Walker, an autistic aikido master who founded his own dojo in Berkeley; the first openly autistic White House appointee, Ari Ne’eman; Emily Willingham, one of the sharpest science writers in the blogosphere; Lydia Brown, a prolifically articulate and thoughtful 18-year-old self-advocate at Georgetown University; Todd Drezner, director of Loving Lampposts, a groundbreaking documentary on autism and neurodiversity from a father’s perspective; and the editors of Thinking Person’s Guide to Autism, which is my personal recommendation for parents to read after their son or daughter’s diagnosis.

Throughout April this year I will be posting stories about Autism Acceptance. Sometimes I will quote others who have much more experience in this than I do. Sometimes I will talk to you about my children. Always I will be celebrating Autistic people and their achievements. I will be talking about the difference between awareness and acceptance, and the impact the two can have on Autistic people. I hope you will join me this April for #Autism Acceptance Month.