By Katie Wright
Wednesday April 6 was World Autism Day at the United Nations. It was sponsored, incredibly, by the nation of Bangladesh. The United States was slow to commit to participating but in the end, thanks to the efforts Bob and Suzanne Wright, the US co-sponsored the conference.
Honestly, I was skeptical about the value of this event. Would it be a tedious discussion on whether or not the rise in ASD was real (yawn) or a celebration of autism as merely a difference, not a disability (crazy–making). I was pleasantly surprised this was not the case.
The daughter of Bangladesh’s prime minster, Dr. Wazed Hossain, a psychologist, spoke eloquently about the immediate educational and medical needs of ASD children throughout the world. She emphasized the urgency in helping families now. Professor Hossain called upon the world’s presidents and prime ministers to get meaningfully involved in this issue. Dr. Geri Dawson of Autism Speaks was a very effective voice for our community. Dawson showed a gigantic graph illustrating the meteoric rise of ASD over the past 20 years and spoke about the reality of environmental agents as a major causative factor.
I sat there astonished that out of all the countries in the entire world Bangladesh was leading these efforts. Just incredible. Autism is probably the fastest growing and most expensive developmental disability in the world and only Bangladesh and the United States were willing to sponsor this event?
I looked around the room of approximately 300 parents, diplomats and disability advocates and asked if anyone from the United Kingdom was in attendance. Total silence. Then I asked if any representatives from Denmark or Norway were in the room. I felt compelled to point out that these nations have been the recipients of nearly $50 million dollars in American autism research funds. I had asked if any Danes or Norwegians were at this event so they could enlighten the audience regarding the progress of their/ our autism research programs. Again total silence.
Wow, I wonder what was so much more important than spending two hours attending the UN’s only event addressing this international health care crisis/ catastrophe? Neither Great Britain, Norway nor Denmark thought this issue was important enough to send even 1 person to the UN’s only autism conference? Other nations who are part of the Global Autism Alliance and recipients of generous American autism grants include, but are not limited to: India, Canada, Australia and Israel.
But back to the UK. I am still in amazement that Great Britain did not show up, fund or participate in any way at the UN’s world autism day. The UK is a permanent member of the powerful UN Security Council. Great Britain has a very large UN staff. However, not one single person on the entire UK staff interested views autism as a crisis? I pointed out this was all the more astounding given the fact that the UK has the world’s highest incidence of autism. Yes, the world’s highest incidence of autism! 1 in 76 British children has autism.
Forget about just attending the conference, the UK should have been sponsoring it. Shame on them for ignoring the needs of their own children and shame on them for failing to stand up for ASD children throughout the world. Less developed nations often look to the UK for leadership on social welfare issues and here they provided none.
Norway and Denmark have proved that they will show up for our cash but will not show up for our children. Are American ASD children research ATNs to them?
Remember NANAE? Denmark and the CDC founded this ridiculous alliance to promote autism research? Over and over again NANAE’s leaders spoke about how they wanted to help the United States and the world “solve the puzzle that is autism.” Hmmmm…Last year it was discovered Denmark’s leading ASD researcher, Poul Thorsen, stole millions of our tax dollars from NANAE. No attempt has been made either by the CDC or the Danish government to recoup this money. In fact Denmark is still a leader in the Global Autism Alliance. Danish autism researchers talk and talk about the urgent need to help ASD children and invest in autism research but in reality they are stealing our money and refusing to support our community? I’m confused.
To Speaker of the House John Boehner, I know you are looking high and low for budget cutting opportunities. May I suggest NANAE? You would be doing all American taxpayers a favor by eliminating this corrupted autism research program.
Autism is an international crisis. We cannot afford to fund any more poor quality research conducted by those devoid of ethical standards or those with substantive conflicts of interests. Enough. Consumers and taxpayers also have the right to expect that recipients of our aid do more than cash our checks. They need to participate in this movement in a meaningful way or stop asking for money.
Finally the UN audience heard from a panelist affected by aspergers. Amy is a young woman who endured horrific bullying in school, leaving her so depressed that at the age of 12 she considered suicide. Amy spoke so eloquently about the need for tolerance and compassion for those affected by autism spectrum disorders. Through an incredible amount of hard work Amy persevered, attended college and is now a very successful mentor to young people with aspergers.
I am truly in awe of Amy. Her courage is inspiring. However, I wanted the audience to understand just how exceptional this young woman is. Most people affected by autism do not share Amy’s gifts. I told the audience about my son Christian, who is severely affected by ASD. He has no unprompted speech, cannot care for himself, has no awareness of danger and suffers with chronic medical problems. Unfortunately for all of us, the Christians of the ASD world are far more prevalent than the Amys.
We all like happy endings and success stories and wish that for our children. However, it is the stark reality of life for the average ASD child that the public needs to hear about the most. Next time I would like to see a parent of a severely affected nonverbal child on that panel. We need to make the public aware of both ends of the spectrum, therefore decision makers can better understand the critical need for biomedical research and interventions.
So finally I would like to thank the nation of Bangladesh, the Under- Secretary General of the UN who gave an impassioned speech and Bob and Suzanne Wright for making the day happen. Maybe the countries that take our research money but were too busy to attend World Autism Day at the UN can now get together and plan next’s year’s conference? That way we can all work around their busy schedule. I am looking forward to it already.