Autism- A Global Problem- A Time for Action

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
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