Katie Wright on World Autism Day
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.
Thanks for the very interesting report. When AIDS first became prevalent, I was under the impression that the medical community was settling in for a long feast of research grants, petty competition, endless conferences and so forth until the whole planet was affected. Then, ACT UP came on the scene and began chaining themselves together in major intersections and making a lot of noise. I wonder if the autism community isn't a tiny bit too nice, needs to cause some trouble and make a scene that is a bit, well, embarrassing. Maybe we need to be harder to ignore. Just an idea. Also, something as simple as stickers placed everywhere with EDUCATE BEFORE YOU VACCINATE could help. Hand them out and everyone can put them on lamposts, campus bulletin boards, etc. in the thousands. That would cause a lot of people to think. Just an idea.
Posted by: Lisa | April 13, 2011 at 04:56 PM
Friends, Please pay attention here, as this has wider implications of something that most people think does not matter very much. Without having any data, I admit, I can assure you that the reason Bangladesh was there can be expressed in one word: FISH ! Fish as a source of mercury, causing autism has not been taken seriously enough. You have this huge population of Bangladesh, eating fish twice and maybe thrice a day , seven days a week. Those fish come from rivers that have been highly polluted with mercury for more than 20 years. We know that the fish eating population of Bengal, just adjacent to Bangladesh, had cases of autism long before the vaccine schedule was increased with Hib, Hep B doses. A typical Bengali three year old boy today, if not autistic, has a blank expression; poor speech; poor coordination and little interest in other children- and he slowly improves from this state.
If the statement made here is correct - that the UK has the highest rate of autism in the world, then this would be related to their beloved fish and chips, no doubt.
A few years ago I was in Manila and a person said to me, regarding autism, "Its my impression that it is more common in the upper class families" Im sure the same would be true for Bangladesh and the reason is simple- It is the wealthy families who purchase more vaccines and can afford to purchase a lot of the prized large-size fish which are the most expensive and the highest in mercury. If you are poor, the best you can do is to eat lots of rice with a few fish flakes sprinkled on top. So you wont find autism among the poor unless they are unlucky enough to live near a government hospital that gives out free mercury-containing vaccines. And...sigh... I can imagine that if it were the poor who had autism, and not the wealthy, not many in Bangladesh would be bothering about World Autism Day.
Posted by: Cherry Sperlin Misra | April 13, 2011 at 01:56 PM
Katie - keep up the good work. you are amazing.
Ann - nothing will change til people start going to jail (keep up the good work you are amazing as well).
Posted by: jn | April 12, 2011 at 08:08 PM
Katie
What could be more interesting that a nation which is not merely "poor" but has been visited by one catastrophe after the next than they should have the clear sight to see this for what it is. I fear that in the UK now we see things only through the distorting lens of corporate interest: even of a corporate interest which will in medium term bring the global economy to its knees. I don't know exactly what significance the absence of a British representative has, apart from the fact that they simply don't rate it: they are simply too careless and indifferent.
John
Posted by: John Stone | April 12, 2011 at 06:35 PM
I love the way you write. You are blessed.
Posted by: Heidi N | April 12, 2011 at 05:36 PM
As always, thank you Katie for being our eyes and ears. Thank you to your parents for everything they have so selflessly done.
And as you brought the story to all of us, we now know to be thankful for Prime Minister Dr. Wazed Hossain, the country of Bangledesh and the Under-Secretary General of the UN and everyone else who made the day happen.
Posted by: Henderson | April 12, 2011 at 03:10 PM
WHO is part of the problem, no doubt.
There seems to be a big disconnect between what people think WHO does and the WHO vaccine issue. I met some terrific UN parents who had no idea re pharma within WHO. I also met some WHO doctors who were very concerned about the conflicts of interests. The more these issues are discussed in the open the better. That it why it is important that countries w/ high ASD incidences show up at these events.
If countries have to shamed into attending autism meetings, that is their choice but the WHO vaccine issue is going to be discussed. I doubt much of the intl autism research will ever be any good but it is a gateway towards accountability.
Posted by: Katie Wright | April 12, 2011 at 01:57 PM
Dr. Clements, the WHO representative present at the infamous Simpsonweod conference said this:
" Thank you, Mr. Chairman, I will stand so you can see me.
First of all I want to thank the organizers for allowing me to sit quietly at the back. It has been a great privilege to listen to the debate and to hear everybody work through with enormous detail, and I want to congratulate, as others
have done, the work that has been done by the team.
Then comes the but I am really concerned that we have taken off like a boat going down one arm of the mangrove swamp at high speed, when in fact there was no enough discussion really early on about which way the boat should go at all. And I really want to risk offending everyone in the room by saying that perhaps this study should not have
been done at all, because the outcome of it could have, to some extent, been predicted and we have all reached this point now where we are leg hanging, even though I hear the majority of the consultants say to the Board that they are not convinced there is a causality direct link between Thimerosal and various neurological outcomes.
I know how we handle it from here is extremely problematic. The ACIP is going to depend on comments from this group in order to move forward into policy, and I have been advised that whatever I say should not move into the policy area because that is not the point of this meeting. But nonetheless, we know from many experiences in history that the pure scientist has done research because of pure science. But that pure science has resulted in splitting the atom or some other process which is completely
beyond the power of the scientists who did the research to control it. And what we have here is people who have, for every best reason in the world, pursued a direction of research. But there is now the point at which the research results have to be handled, and even if this committee decides that there is no association and that information gets out, the work has been done and through freedom of information that will be taken by others and will be used in other ways beyond the control of this group. And I am very concerned about that as I suspect it is already too late to do anything regardless of any professional body and what they say.
My mandate as I sit here in this group is to make sure at the end of the day that 100,000,000 are immunized with DTP, Hepatitis B and if possible Hib, this year, next year and for many years to come, and that will have to be with Thimerosal containing vaccines unless a miracle occurs and an alternative is found quickly and is tried and found to be safe."
Posted by: EV | April 12, 2011 at 01:56 PM
Katie,
I really appreciate all that you do for our community. I am so happy that you get invited to events like this and then report back to us. It's so refreshing that you don't sugar coat what you saw either. You are a fantastic asset!
Posted by: Becky Estepp | April 12, 2011 at 01:41 PM
The UN is part of the problem. They might host an autism event in New York but the WHO is the biggest obstacle to a saner vaccine policy. They know what is going on with autism yet they are busy giving out 100 million doses of vaccines every year in the developing world with mercury from the leftover vaccine stocks. It is so so sad.
Posted by: EV | April 12, 2011 at 01:00 PM
So is you dad, with all his media ties, going to let the world know the things you just pointed out? I'm grateful that your folks made the day happen,, and I'm grateful for any great things they do... but they are the closest in the community to the people who can make a difference... the media... When will they speak out to the media about what is going on? When will they make a stronger stand?
Posted by: joyous | April 12, 2011 at 11:48 AM
Katie,
I'm seriously convinced that no one will do anything about autism until it hits us like the Blitz or Pearl Harbor and suddenly young adults with autism start leaving the school system at age 21 with nowhere to go. National governments seem paralyzed by autism. It's much easier to put money into dead-end busywork looking at genetics and a 21 year children's study than to honestly address what autism is doing to our country. Governments tend to be reactive, not proactive, but the nightmare of autism isn't going away. I never hear officials talk about planning for the new generation of autistic adults, but they're coming like bombs dropping out of the sky.
Dr. Lawrence Rosen had a piece published about autism awareness in which he said, "More and more children will soon be teenagers and then adults with autism. Our society has never witnessed anything like this,"
http://kiwimagonline.com/kiwilog/?s=autism
That comment has stayed with me. We're so totally unprepared and unconcerned. We're been told that all we need to do is to be aware and accept autism. That is our greatest failure.
Anne Dachel
Media
Posted by: Anne McElroy Dachel | April 12, 2011 at 10:29 AM
Just a thought but how good are ANY of the government funded organisations worldwide. The organisations that we all recommend to one another that we find useful ,none of them are funded by the governments and infact the funded ones are the ones we the non funded organisations usually find ourselves arguing with.
I say stop all funding and let AOA, Autism Clinic, Generation Rescue, JABS, ATT, Autism Biomedical etc etc disperse the funds to whoever they see fit and not one penny nore to the government funded organistaions just now as every one of them is CRAP and sponges the tax payers monies..
Posted by: Angus Files | April 12, 2011 at 09:42 AM
To think that other countries just took research money from the US is quite naive. The US paid for and got the research results they wanted/needed from these countries (and let's face it, when we say countries we mean a select group of researchers willing to do their bidding). When are Americans going to ask the most obvious question-why are the vaccine studies mostly done in countries other than the US, with less people and a different schedule?
Posted by: coffee's on! | April 12, 2011 at 08:52 AM