By stef6angelz |
Policy and Awareness

Just to let Australia know, here in Perth, there was nothing noted in the nightly news on any of the commercial channels or a mention in the newspapers to celebrate World Autism Awareness Day. Nor was there an acknowledgement that April is now Autism Awareness Month (not May as in previous years) and to make matters worse, the iconic bell tower on the Swan River in Perth, malfunctioned and didn't "light it up blue" for the worldwide campaign created by Autism Speaks. Not even the prominent newspaper, The Australian, printed a single word. I was so disappointed and in response wrote this letter to the editor;

"To the Editor

On the eve of World Autism Awareness Day, yet again, I feel let down by the media. I write letters in the vain hope that attention will be given to this worthy cause but alas, not a thing. Not a mention. Nothing. Today is just another example on a long list of ignorant media entities. But hey! If I was P!nk and decided to be B!ue, perhaps it would make the news. I am a mother of 6 children and I am a passionate advocate for those living with Autism Spectrum Disorder (ASD) daily. They will not disappear because you choose not to see.

April 1st kicked off Autism Awareness month with April 2nd being the official World Autism Awareness Day. There are various campaigns running around Australia including “Light It Up Blue” with prominent and iconic buildings being lit up blue and another today being April 2nd, which is "Wear Blue on April 2". Please prove me wrong and send me the article you published that I couldn't find...

To those who knew and participated in these events, I congratulate and thank you all from the bottom of my heart. Education and Awareness of the Autism Spectrum will lead the way in creating a more tolerant, kind and cohesive society.

I'm looking forward to your reply and hope you will publish this submission in the Letters to the Editor, then perhaps, there will be a mention after all.

Stephanie Brown"

It wasn't published but that's no surprise is it?

I'm on the board of Autism Solutions Incorporated here in Perth http://www.facebook.com/pages/Autism-Solutions-Incorporated/14547128218…. We formed this organisation due to the lack of support available for families in our community. We are passionate parents devoted to the cause of raising awareness of ASD and promoting understanding and acceptance. We celebrated this year by baking 500 cupcakes iced with blue icing and children went to school dressed in blue giving a gold coin donation to any autism charity organisation of the school's choice...what fun!

Now imagine that on a national scale! Now I would like to share this idea...let's link all groups big and small to be a collective voice for all people on the spectrum and their families. There is a Facebook site already collating website addresses and linking groups together so I posted this discussion note;

"What a powerhouse we'd be, if all the groups around Australia linked together? Especially for the huge national and international events?

There are so many groups around Australia who may or may not be aware of each other. I'm finding new ones all the time, so all groups, small or large, let's join together. Many hands make light work and many voices raised as one have the power to change the world.

There is a page already up and running at the moment;
http://www.facebook.com/pages/Autism-Links-Australia/107014029330687

So please add your details, share your ideas and join the collective voice...

Post a reply and let me know your thoughts :)"

Before I posted this new topic on Facebook, I added "...on the political front line, Bobb Buckley and A4 are doing an amazing job representing all Australians and providing us with a collective voice. If you haven't joined A4 yet, please register and give Bobb your full support; http://a4.org.au/a4/"

Are you listening Australia? I hope so...so come on and join the party :)

You have many valid points and it is obvious to me that you are passionate about Autism. As an Autistic person I appreciate and advocate awareness as critical. However, I would like to raise an issue that has been bothering me for some time now, and which many people may be ignorant about. In your posting you referred to "Autism Speaks".

The 'charitable' organisation "Autism Speaks" is indeed becoming a powerhouse of the global Autism movement, and on the surface it appears to be a philanthropic supporter of Autism awareness and research. However I urge all Australians to be extremely cautious about this American organisation and to investigate its activities and policies before aligning to them publicly or supporting them financially. These are the areas that you need to objectively consider in fine detail:-

1. Why do so many Autistic adults find "Autism Speaks" to be extremely offensive? Why are there T-shirts that say "They don't speak for me?" Afterall, it seems to espouse a sharing and caring attitude and mission, and it has a wonderful web-site that offers so many positive contributions to people with Autism. Have a look at blogs from people with Autism to find out why it enrages so many to find that they have a non-autistic "voice" that is rapidly becoming the face of Autism. Here are two to begin your investigations- http://autismcrisis.blogspot.com/2008/06/epidemiology-of-autism-speaks… and http://www.autismpolicyblog.com/2010/09/criticisms-of-autism-speaks.html Remember - we are the ones with Autism, many of us have extremely high IQ's, and many of us are scientists! So please read on before you accuse us of conspiracy theories;

2. What research does it actively promote, and which types of research do they actively ignore? Does research include studies in areas such as social acceptance of Autism, and building positive and functional outcomes for people with Autism? Or is it based on eugenics and transhumanistic goals that include the elimination of Autism from the gene pool? What does that mean exactly? Does everyone with Autism want the "cure" that they so nobly espouse as a core goal? What empirical evidence supports or warns against removal of genes from the human gene pool, and why? What view would a genetic ethicist and/or scientist have? More importantly, how would you feel if you were considered as genetically undesirable?;

3. What are the ethical implications of their well-funded research into identifying and targeting Autism genes? They operate a parallel stream of research aimed at creating a global pool of registers of Autistic populations, ostensibly to monitor and contribute to epidemiological research. For those with Autism in your gene pool, think about this very carefully. What may this imply for future generations?;

4. This organisation has been criticised heavily regarding its financial records and accountability. I have viewed their financial papers, which also detail payments to the board and directors (all of whom are non-autistic). It is very enlightening, but why trust me? Investigate for yourselves. Here is a good starting link - http://www.bbb.org/charity-reviews/national/human-services/autism-speak…

5. I have been warned by an American-based advocacy group that anyone criticising "Autism Speaks" needs to exercise extreme caution. It is their considered opinion that many critics are silenced through a powerful legal arm of the organisation. They emphasise the power of litigation, and the advantage of political and legal connections;

6. What input do Autistic adults have within "Autism Speaks"? How many adults with Autism do they employ or consult, and in what capacities? Are there any board members with Autism? Do they have a public spokesperson that is an actual person with Autism? If not, why not? We are not voiceless, and we are capable and intelligent people. Wouldn't you think that would be a good role-model worth showing to the world? To show kids and families with Autism they can aspire to achieve and be accepted as adults with valuable skills and contributions to make to society? So who is speaking for me exactly?

7. How is Autism portrayed by Autism Speaks? Refer to http://www.disabilityscoop.com/2009/10/02/autism-speaks-apology/5624/ for one view. Personally I find their portrayal to be negative and patronising, with skilful employment of negative inferences in all references and information about Autism. Check out their advice to families about stages of grief when a family member is diagnosed. Nice to know we are so appreciated, and incidentally the stages of grief theory is out-of-date.

I hope this posting generates much debate about this, as this organisation is growing rapidly. They are already funding research into population registers within Australia (in WA to be exact). Personally, I am extremely concerned about any links that Australian Autism bodies and researchers may have with "Autism Speaks", and feel that this is a debate we need to have now rather than later. I don't want a naive acceptance of every "philanthropic" organisation, just because they appear to say and do the right things. So I must heartily disagree with your call to all join together, unless transparency of values and accountability is a universal and public requirement. But all of this is just my personal opinion.

Thanks.