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In the United States, a child is diagnosed with autism every 20 minutes. In developing countries, we have no way of knowing the national situations. Dr. Eben Badoe is one of only thirty pediatricians in Ghana, a country of 19.4 million people. He is the only one diagnosing autism. He recently told us, “right now, I diagnose children and then I lose them in a way.”
The Global Autism Project is working hard to change this.
We bring research-proven methodologies of autism intervention to developing countries. A commitment to a balance of scientifically sound interventions and cultural sensitivity is integral to our work.
I wonder what we can learn from other countries in this regard.
12 comments:
I have ALWAYS wanted to know what the incidence of autism is elsewhere.
Speaking of elsewhere, I've spoken with a physician who says the royal family in Saudi Arabia has a pretty high incidence of autistic kids.
(This is a person who would know.)
It is happening everywhere. My son (with ASD at age 2) was born in Germany, we lived there prior for 7 years. When we first realized it, the autism experts we visited there also said the numbers were increasing all over Germany. It is everwhere and this is why it is even more alarming, what could possibly be happening on a global level?
thanks for referencing the global autism project, great friends of ours! www.yummycoffee.org
While autism rates rising are alarming, there are lots of things that can cause a change on a global level, the first being: knowledge.
2000 years ago no one got diagnosed with influenza. Didn't mean it didn't exist. 200 years ago no one got diagnosed with Lou Gehrig's disease. Didn't mean it didn't exist.
As human understanding of what counts as a disease changes, our global world can disseminate that information pretty quickly now, so people can name the disease, read the criteria for a disease, and diagnose it. There are a lot fewer places on the planet that now think witchcraft or demonic possession is the cause of disease than there were several hundred years ago.
Are there other factors that could cause a global rise in a disease? Yes, assuredly. Those include everything from the notion that a disease is a virus or bacteria, or is precipitated by one, to the notion that changing demography yields changes in genetic birth outcomes, to the notion that environmental factors such as what food humans eat could affect outcomes.
Current theories strongly support certain genetic predispositions, and others support father's age at conception. Not surprising that an inbred family who lots of children from old men like the House of Saud would have high incidence of genetic disorders, any more than it's odd that the European royal families have hemophilia.
As I get older, I realize how much we forget. We lose sight of how recent certain changes in family structure are.
Not so very long ago, a woman who married at 18, and started a family would not have been a rarity. Nowadays, such a marriage will provoke head shaking about "children having children." In my mother's generation, it was common for girls to leave college to get married. My point is, the age at which a middle-class woman begins a family has increased very rapidly.
It is rare, even today, for a woman to be significantly older than her husband. Thus, not only are the new mothers likely to be older, but the new fathers are older as well. The formula seems to be, not only finished with schooling, but well established in a career, and able to afford a comfortable, middle-class existence for the family. All well and good, but it means that the childbearing couple are significantly older today than they were 30 years ago.
If you add in selective mating, and parents who have the means to have a child diagnosed, it may help to explain the rise in autism diagnoses, without any extra factors. All these demographic changes work like huge experiments, without any controls. We are fertile for such a small segment of our potential lifespan, it would be strange if moving the childbearing years from age 20 to age 35 had no effect.
On the other end of the spectrum though you have children in middle school having children. I know of a middle school with a day care center built in.
Could it be that there are two distinct groups, one having children at ever older ages, the other having children at ever earlier ages? And if that is going on, what are the numbers like? What are autism rates for each?
My low SES kids are consuming a nutritional nightmare (including what they get from school food programs). We have lots of autistic kids and tons of ADD.
Can someone share their knowledge about ADD - autism linkages. A lot of high end ADD kids seem to have symptoms you find in low end autism. Does autism get misdiagnosed?
I know high SES who are also consuming horrid food. The British experiment on food additives was very thought provoking. I hope other scientists are trying to reproduce their findings.
It seems to me that convenience food contains more salt, more sugar, more oils, more flavor and color additives than food prepared from scratch. This may not be healthy, when consumed in great quantities. When I visit a supermarket these days, though, ever more floor space has been committed to convenience food.
Could it be that "autism" and "ADD" are each comprised of many different conditions? And that, if there are genetic predispositions toward the conditions, they may be triggered by the environment? I've read so many theories blaming everything under the sun for autism and ADD, from food and family structure to TV.
We used to use "autistic" to describe the absolutely hopeless cases. Now, you'll hear perfectly functional, highly successful engineers describe themselves as "on the spectrum." When a term changes that radically, it's difficult to compare numbers over time.
On ADHD/autism connections: anecdotally, I've heard that in some areas, a kid with behaviors that could fall into either label sometimes gets the autism label as more services are available for autism (including social skills training) than for ADHD.
In general, in the coming decades I think we will be seeing "autism" parsed much more finely, with many more syndromes being defined, and appropriate therapies being devised, tested, evaluated and refined.
Book recommendations:
On autism internationally, and life with an autistic child: Roy Richard Grinker's Unstrange Minds (http://www.unstrange.com/) An aside: Dr. Grinker has mentioned that while his book has been translated into several languages, he has been unable to find a publisher for a Spanish-language version of the book, indicating something about autism in Spanish-speaking countries.
On "quirky kids" -- The Drs. Eide's The Mislabeled Child and their companion website, http://www.mislabeledchild.com/
On "quirky kids" -- While I have some reservations about Mel Levine's approach, his textbook Educational Care should be read by every parent whose child has learning issues. Be sure to look for the 2nd edition http://shop.wgbh.org/product/show/8820
"Quirky Kids" is also the title of an excellent book by Perri Klass and Eileen Costello Quirky Kids from Amazon
That's a start, anyway.
"It seems to me that convenience food contains more salt, more sugar, more oils, more flavor and color additives than food prepared from scratch. This may not be healthy, when consumed in great quantities."
They also almost all contain soy or milk or wheat. I know some people have had seen some improvement in their autistic children when they take out these foods.
I have recently developed food allergies, and outside of the organic section, it's almost impossible to find something in a box or a can that doesn't have on of the top 8 allergens--and I'm now allergic to them all!
Strangely enough, the store version of taco shells are allergen free if you can eat corn while the name brands have other allergens in them. Otherwise, the few convenience foods I can buy are all organic and are much more expensive than their non-organic counterparts, although a few non-organic brands of diced tomatoes are OK.
I've also heard that there aren't as many autistic children among the Amish--but they have several different factors going on that might be hard to isolate.
TV, food, exercise, farm-lifestyle, etc.
Liz:
What great comments your readers make...I think in the U.S. we're getting better at identifying dealing with Autism, but availability of good help is highly variable and the good providers are full up.
Larry
Hello All,
Thanks so much for your interest in autism, globally. I am the Founder and Executive Director of the Global Autism Project. It was a small little idea five years ago, and it is amazing to see so much interest! I'd like to personally invite any of you interested in learning more about our project or getting involved in some capacity to please email me directly at molly@globalautismproject.org or call me at 917.686.7392. We'll be updating the site in the next few days, and we'll also be on CNN this coming weekend- check the site for details!
Thanks so much!!
"... sometimes gets the autism label as more services are available for autism (including social skills training) than for ADHD."
Our state lumps everyone into one group, where the money is. Most people see it as the IEP group. This is a large percentage, but many of the kids are there temporarily. There are a number of programs and interventions, but I don't think they break down the statistics to that level. They also seem to be more interested in programs than labels. Some like labels and some don't.
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