Sunday, March 11, 2007

GLOBAL AUTISM INFO POST

GUEST BLOGGER

I've been asked to post a guest blog piece. So awaaay we go!


Tami Giles writes:

An Autism Calling

My friend Dave Humphrey has been writing a private blog, chronicling his month-long trip to Thailand, where he is helping to open a Medical Treatment Center for Autism. While many of his posts are private- detailing the outstanding medical evaluations and treatments he is receiving for his own personal health needs while there, he provided an entry that hit me in the gut.

I consider Dave Humphrey a dear friend. Who else would take the time to get his maintenance man to haul a rolling ladder in the lobby of Kirkman Labs, just because my son had an urge to examine the exit sign on the ceiling?

But this isn't just about my friendship with Dave; he is a friend to the entire autism community and an incredible humanitarian. He is a Board member of the Autism Society of America, Autism Research Institute and the Northwest Autism Foundation, co-founder of the Autism Treatment Network, and the owner of Kirkman Labs, just to begin with. Dave and his father shared a life-long friendship, spanning decades, with one of the greatest men in history- Dr. Bernie Rimland.

With his permission, I am circulating Dave Humphrey's heart-felt blog entry. This is an open letter to all of those involved in autism, but especially to all of those researchers and medical professionals who have been, and still are- using precious research dollars on the pretense of looking for answers at our children's expense. It's time to stop the senseless research spending on snipe hunts and begin helping our families. Indeed, it's definitely time to stop the NARAPOIA.

Heartfelt thanks Dave, for this outstanding reality check and call to action.

--Tami Giles
http://www.autismrecoverywa.org/


Autism - Global Problem – A Time for Action
David Humphrey
March 7, 2007

Not much in these posts has been about autism.

It is intentional because much of what we are working on this autism treatment center in Asia is embargoed until we are ready to talk about it.

But AUTISM is the reason I am here. It is much of the motivation for getting better and living longer. There is so much to do.

Autism around the world is rarely talked about in the United States. Until recently it really wasn’t talked about at all.

The following is the best information on the number of children facing a life with autism in Asian countries

China 2,500,000
University of Beijing estimate – working with Johns Hopkins to get a better number

India 2,000,000
Reports from parent groups not confirmed by government (number attempted to be verified by AS)

United States 600,000
INCLUDED FOR REFERENCE # - Current estimate of CDC in the US

Indonesia 350,000
Estimated by Health Minister of Indonesia

Japan 300,000
Widely reported to have the highest rate of autism in the world

Philippines 250,000
Estimate by the Autism Society of the Philippines – a reliable source

Vietnam 200,000
Unreliable number

Thailand 180,000
Estimate of the Minister of Mental Health

The numbers don’t mean much until you meet the children and talk to their families. I have done that a lot in the past few years.

What is crushing for families in the US - with pretty good resources - is unbearable in countries were families have very limited resources.

Governments in most of these countries virtually ignore the problems of autism because the just can’t deal with the enormity of the problem. We were in North Korea were their solution is to send children with autism upon the first symptoms to a remote institution where their life expectancy is less than 2 years. Most starve.

Even in 2nd world countries with strong economies - lots of Starbuck’s -- conditions can be horribly bad - I have been in Autism institutions where these children are literally warehoused in shocking conditions.

You are permanently changed from the experience of walking through an institution and seeing 3,000 children with autism - some tethered to their beds lying in fecal matter as a result of chronic diarrhea and untreated medical problems.

It is 1 out of 150 children and growing.

This global problem is not a problem we turn away from.
This global problem is not a problem we turn away from.
This global problem is not a problem we turn away from.

Autism is a global problem that requires global solutions.

Just as AIDS began with treating the wealthy - it became all of our responsibilities to face AIDS as a global epidemic we had to address the poor and neglected.

Today - a person with AIDS in Haiti can get the same treatment with dignity as in downtown San Francisco. The program is run by an American who refused to quit - who had a dream. That was not afraid of his academic reputation - that saw the face of God in the people that were suffering.

(see a very compelling article about what one man did for AIDS in Haiti - http://www.foreignaffairs.org/special/global_health/farmer

Silent Pain of Autism

My good friend Ells Culver - founder of Mercy Corp (the largest international emergency relief agency) went with me to Asia and investigated the devastating effect of autism. He got very involved with the unbelievable neglect he saw.

He told me with great sorrow -that if he were not working for Mercy Corp he would devote his life to autism. He said that the children were raised in silent terror and ignored by those that should be helping. This cause him more pain he said than disaster victims who do get help. He died last year at 78 with most of his work undone.

Because these children are raised in such sorrow – and in silence - it is their collective voice we need to hear. It is defining problem for me. It is a defining choice for those of us involved with allocating resources. It is a defining choice for you.

To say that maybe we need to concentrate on autism in the US is not asking the right questions. It is a convenient way to look away.

They are our children - they are our responsibility. There are no country boundaries with autism.

We are on the Threshold of a Dream - a way to solve the problems of autism

We have the pieces of the puzzle in front of us. We can see the future solution by putting the pieces together- it is up to us. We can have a dramatic effect on the future if we believe and have the tools. If we work together.

The future is to stop autism in the next generation and treat those with autism with respect and dignity regardless of where they live and their finances.

They NEED our angry advocacy.

The dream includes:

PREDICTING AUTISM RISKS IN THE NEWLY BORN
PREVENT IT FROM HAPPENING IN THE HIGH RISK
RECOVERY FROM SYMPTOMS

We have evidence that all of this is possible- actually probable. It needs to be part of public policy not just boutique clinics.

Will this happen if we just focus on expensive solutions for the wealthy in the US? - you know the answer.

There are individual silos of knowledge that can make this happen. It can happen in our lifetimes.

BERNIE GOT IT

I really miss Bernie Rimland. He looked out and always was able to see the future as well as the urgent need for Treatment NOW! His selected guy Steve Edelson also gets it and I am proud to call him my good friend.

Bernie understood global because he understood autism. He never separated the two. He had a cot in the back of his office to take catnaps so he could answer phone calls from around the world. From parents. These were not strangers - he just didn’t know them before they called.

Bernie was not polite in tolerating the clueless - those that he said had “contempt before investigation”. Those that had to ask if this was the right time to begin treatment. “Nonsense! – he would say”… nonsense

Because you see - these same people also do not want to hear about the parents highly significant EVALUATION of their child’s conditions OR the diagnosis of specific medical problems that their child is facing. Treatment is the result of the other two coming first. It is also the other two – evaluation and diagnosis that they do not want to talk about either. These are not options for out children – they are rights.

He repeated said he suffered from NARAPOIA - not paranoia but narapoia, Narapoia he would say is the “false belief someone is trying to help you”

So many are receiving money for autism based on their academic curiosity… with little or no interest in treatment. They actually use their influence to discredit treatment and the courageous parents that are self treating their children because of professional neglect.

Being here in Thailand feels right. It will be part of the solution.

Divine Hand

Ells Culver told me that don’t be concerned with the difficulty or the discouragement in working on the autism problem. He said that a divine hand will guide us toward success.

More later

David Humphrey

32 comments:

The Wandering Author said...

Kim, I realise I'm focusing on just one point in this letter. There are many other points that shook me up, but this was the only one that mentioned life expectancy, so I single it out.

It states that in North Korea autistic children are placed in a remote institution where their life expectancy is less than 2 years. How is this any different from Nazi Germany and their concentration camps? How many other countries does this happen in?

Haven't we learned anything as a society? Why isn't the media reporting this and making a fuss? Why isn't our government making a fuss? We are talking about human beings here, singled out and killed for something beyond their control!

I thank you for posting this, and for bringing the problem to light, at least for me. You, at least, have done what you could, and what you should, as a human being. But where is everybody else?

Steve said...

Outrage, despair, bewilderment.

I also thank you for posting this; it will keep me awake tonight as I wonder and pray how I can help in any way.

Anonymous said...

It hurts me to read the prevalence numbers in those other countries... realizing the unreported numbers may go much higher.

But what hurts more is to hear of the ABUSE and negligence perpetrated on these precious children. Even if we convinced the world of what caused the epidemics and taught them how to biomedically-recover these kids... it would take YEARS to get proper care for those affected, but for many it would be too late.

What we do in this country to stop this disaster will lead the way for the rest of the world. But we MUST reach out and educate these other peoples and their governments what has happened. There is no time to lose.

"On the turning away
From the pale and downtrodden
And the words they say
Which we wont understand
Dont accept that whats happening
Is just a case of others suffering
Or youll find that youre joining in
The turning away

Its a sin that somehow
Light is changing to shadow
And casting its shroud
Over all we have known
Unaware how the ranks have grown
Driven on by a heart of stone
We could find that were all alone
In the dream of the proud"

—Excerpt from "On the Turning Away" by Pink Floyd

Erik Nanstiel

Kim Stagliano said...

Erik, welcome. I fear the lyric that most applies to helping, really helping our kids from Aerosmith, "Dream on." That's why we fight, though, Erik. Right?

Kim

Anonymous said...

Hi Kim,

How about Twisted Sister's "We're not gonna take it anymore!"

An anthem for the CDC, I suppose.

Erik

Allison said...

Kim, Thanks so much for posting this. I cried thinking of the institutions and the children there. In the US it has seemed to me to be more of lack of awareness of treatment. Almost no understanding of the immune implications. Even some who would have enough money to get biomedical treatments aren't aware they exist. Money is not helping children and their physical aliements here it is being used to silence the hope of treatment, pinning Autism on genetics only. If we don't get the word out here on the realities of this neurobiological syndrome and treatments that can help; we will never hope to get the word out in these desperate countries performing attrocities beyond imagination.
My heart is breaking and the feeling of helplessness is a growing pit in my stomach.
Do we have to become manipulative and conniving in order to get this into mainstream media?? Is the pureness of intent not enough to be heard? Maybe Oprah would expose this, even if she isn't willing to talk about treatment. If only I had Lisa Ling's phone number. "If only"......

Anonymous said...

Would the United Nations with its Goodwill Ambassadors ever consider sending a well-known star to reveal these horrific conditions? Sorry to be so cynical, but attention is paid only when someone with bling or power points it out. Would the US Government ever send someone like Dave Weldon on a fact-finding mission to these countries? The Plames are free...

ORION said...

I think the statement that impacted me the most was the part about "academic curiosity." As a PhD student I see first hand the desire to use these children and parents for research for a professor's or department's own gain rather than the benefit to the individual's specific needs.
"Nothing about us without us" should be the rallying cry.

Michelle O'Neil said...

I would love to see the research as to when the autism explosion occurred in these countries re: vaccinations.

The conditions might not be as dire here, tied to beds, dead before two years old, etc...but if you have autism in the U.S. and you are poor, you are very much screwed.

I would have driven off the cliff long ago if I could not have helped my "high functioning" child through bio-med therapies and as you know, they ain't cheap.

writtenwyrdd said...

Thanks for the post. I dear friend has a severely autistic little boy, and they spent more than I earned in a year for his special needs schooling. And even these folks had problems with my friend's innovative home teaching. She began to teach her son to sign, and he actually began to use a few words of sign (and later but infrequently to speak those few words out loud.)

Innovation and money towards treatment are so important.

And I hadn't realised it was up to 1/150!

Patrick Sullivan Jr. said...

Great post! I know it helps me to have something like this every so often to rekindle the fire under my tail. Linked to ya here.

Laura said...

"The conditions might not be as dire here, tied to beds, dead before two years old, etc...but if you have autism in the U.S. and you are poor, you are very much screwed.

I would have driven off the cliff long ago if I could not have helped my "high functioning" child through bio-med therapies and as you know, they ain't cheap."

Michele has a good point! I just bought another $50 in supplements yesterday, and that was just a couple of new things to try. Meaning, they may not work, they may have adverse effects, etc. So, $50 for something to try, because it's not like a regular doctor would prescribe something "to try" unless it's an antibiotic for an ear infection. That's another story, though...

I'm posting this on my blog, too. I'm on the AutismRecoveryWA list and saw this AFTER I saw it on your blog. Good work, Kim!

Anonymous said...

Yippity skippity a link from the Pat Pat show; better known to many as the king morons of the world wide web

Kim Stagliano said...

I like Yippity Skippity. May I borrow it?

That's the thing about blogging - lots of cross over, strange bedfellows and even new friends. Higgeldy piggeldy, wing wang woo! I'd be your friend, but you didn't share your name.

Chuck said...

Thanks for broadening my view on how the autism problem is not just a USA problem,I would love to know the autism stats in the countries that banned mercury in vaccines years ago like Russia.

Richard Farretta

veronica zanfir said...

Kim, thank you for this post. I am a lawyer trying to help a Philippine family stay in Canada where they can secure good medical care for their autistic 3 year old. I am trying to prove to the Canadian government that in the Philippines the child would not have access to appropriate health care as an autistic child.



There is much legislation protecting the rights of persons with autism in the Philippines and there is something called Autism Week. The visa officer will use these to try to prove that this autistic toddler will not suffer if he is removed to the Philippines. In reality, in the Philippines this family would not be able to access the treatment that is regular and hands on as in Canada, or the same medication as in Canada. I have seen only two reports frompeople with autistic children in the Philippines - these say that they ahd to withdraw their children from school, do not have access to medication, and that autistic children generally suffer - two blogs are not enough to save this case.



I am seeking reports and accounts confirming that indeed, in the Philippines it is hard to secure treatment for autistic children. I would be very grateful if you could point me to any websites, literature, or organizations, etc you may be aware of.



On behalf of this family, I thank you for any leads or infomration you may be able to extend.




Veronica G. Zanfir, B.A. (Hons.), L.L.B.

Expatgirl M.Ed. said...

Korea and Thailand can not be compared. The two countries have very different cultural viewpoints on people with disabilities and education.

In a quaint little private school called Worrapat in Hatyai, Southern Thailand children with high functioning autism (including non-verbal children) are accepted and integrated into the general population. In the public "Tessabahn" schools of southern Thailand children called "ben fai" are also found. I found the integration of middle and high functioning children with autism quite astounding for a developing country.
My Thai daughter with autism was in a public "Tessabahn" school and received free pull out services (along with free haircuts, vaccinations and de-worming all without parental consent or warning: but free).
Of course, the same as in any country, these children are misunderstood and sometimes stigmatized; but Thailand has a reasonably accepting culture.
Yes, services need to be regulated. The government needs to open, regulate and mandate schools and schooling for special needs children of ALL abilities.
Yes, services need to be improved and updated.
Yes, the general population needs better education on ASDs.
Yes, Thailand severely under represents medical statistics. It is a government policy. I have many personal experiences from my years spent in Thailand to prove this.

Please everyone make a list of people, websites and foundations so we can work together to improve the conditions for children with Autism in Thailand. All the education, care and contributions that can go into this effort are appreciated.

Let us work together to be positive and contribute.
How do we contact Dave Humphrey?
I would be happy to contribute a section of my website and blog www.south-thai.com to organize the efforts of autism education and care of individuals with autism in Thailand, especially the south. Write to me with links and ideas.

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