Autism…
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I had lunch a few weeks ago with a very good friend of mine who has two autistic children. They’re both boys - and very young - under 5. I used to work with her. She has an MBA, is very smart, and could “do” a lot of things professionally. Her husband is an attorney, and works full time. She does not have the time to do anything professionally. “My life is all about autism,” she said.
For those who don’t know much about autism, the Reader’s Digest version goes something like this: It’s a neurodevelopmental disorder that shows up early - usually before the age of three - and is connected with difficulties in communicating, interacting, and just plain “being there.” Autistic kids often appear to be in their own little world - completely unaware of anything going on around them. There are no physical signs to speak of. Autistic kids look just like other kids, which causes some folks, who seem to need to see the problem to believe one exists, to presume there’s nothing wrong with them that can’t be “fixed.”
Sadly, no one seems to know what causes autism. There’s a lot of dialogue about the mercury in vaccines, and other, possible environmental connections, but no hard evidence, and nothing else, other than “genetic disorder” seems to fit the bill at this point in time. Therefore, there is no known cure - only therapy and, in some cases, medication, to deal with developmental and behavioral issues. To complicate matters further, there are various forms of autism - some of which are quite severe - while other forms are noticeable, but do not negatively affect someone’s ability to lead and live a productive life. And it’s not unheard of for people with relatively mild forms of autism to have a “special” skill - astonishing musical capability, off the charts math skills, amazing versatility with maps and geography, etc.
Prevalence statistics for any kind of autism are all over the place - due in part, I suspect, to the fact that diagnoses for this kind of illness can be complex. The Centers for Disease Control and Prevention puts it at about 6-7 kids per 1,000, while others have said it’s as high as 1 out of 100. Either way, it’s more frequent than it used to be - either because there’s more of it, or because people’s capacity to identify it early and appropriately has significantly improved.
There was also a very good story on this topic in the Boston Globe in early July that outlined the difficulties school systems are having finding the talent, the skill sets, and the money to provide therapy and educational services to autistic children, and the difficulties parents have finding and retaining the social and therapy services they seek for their kids.
I raise this today for three reasons. First of all, my friend has her hands full - in ways folks like me can’t even begin to appreciate. My wife and I used to joke about all the accessories that travel with little kids - strollers, diaper bags, snacks, clothing, toys, crayons, paper, blah, blah, blah. Everything’s a troop movement, even if you’re just going to the park. Now imagine doing the same thing with two autistic children, one of whom “runs” for no apparent reason and without forewarning. When a toddler doesn’t want to do something or go somewhere, parents try to reason with them - engage them - and get them to agree to move along. Parents with autistic children have to find a way to work through disagreements with their kids about when and where to go without having the luxury of engaging their children - as I would mine - in a discussion about our next move.
More simply, take everything you’ve ever done as a parent that you thought was ”hard,” and try managing that same activity with a child who can’t or won’t engage with you on any level, and in some cases, may react badly to your attempts to manipulate what they’re doing or where they’re going. In addition, presume this child cannot, in many cases, be easily distracted away from what they want to do at that particular moment.
Second, the current funding arrangements for services for autistic children reflect some of the complexities associated with the diagnosis and management of this condition. Therapeutic services are funded through a variety of sources - state funds, education funds, private health insurance, and some federal funds. Much of it is not autism-specific, but tied to child development and/or educational development programming. Stitching together an ongoing, year-round treatment program can be very complex, even for parents who can put the time and money into crafting their own plan.
Third, it’s a growing problem, as more and more kids are being diagnosed with some form of autism every year, and it’s not clear to me - or to others - that the existing systems that are in place have the people or the capacity to handle the growth in service demands.
I know this is not a uniquely American problem - and I know that Massachusetts has a strong reputation nationally for putting more time and money into this issue than most others do - so I would be interested in knowing if others with experience with this issue have some insights into how other countries manage autism.
And for those of you who would simply like to learn more about autism, but don’t want to read a textbook, I read a great book a couple of years ago called, “The Curious Incident of the Dog in the Night-Time” by Mark Haddon. The book is a work of fiction, but is written from the point of view of an autistic child. It’s an amazing piece of work, and the most accessible and understandable description of autism - and how it works - I’ve ever come across.
When explaning it like that you can see how hard something like that can be.
I regret that I only spotted your post on autism just now, three weeks after you wrote it.
Thank you for an astute summary of autism and its impact on families. As the father of an autistic 20-year old, I certainly recognized much of life as we know it in my household, where we refer to autism as a 24/7 audience participation disability.
It seems likely that many of the most important data points on autism spectrum disorders - including true trends in prevalence - will remain uncertain for some period of time. Continuing advances in brain science and continuing changes in diagnoses will see to that.
What is absolutely clear, however, is that autism spectrum disorders are generating a significant new wave of need, particularly a need for safe and sound human services for autistic adults.
The state is barely equipped to understand these needs, much less to serve them. Many autism support and service groups in Massachusetts have now come together under an umbrella group, Advocates for Autism of Massachusetts (AFAM), in order to promote safe, sound, statewide policies to meet what has been called the approaching ‘tsunami’ of autism-related service demands in Massachusetts.
I’d encourage all parents, providers, and educators with a stake in this to check out AFAM at http://www.afamaction.org
Thanks again for writing about this !
Tom - thanks for your post. My friend’s comments were eye-opening, to say the least.
“The Centers for Disease Control and Prevention puts it at about 6-7 kids per 1,000, while others have said it’s as high as 1 out of 100.”
Just wanted to point out that the CDC’s estimate of 6-7 kids per 1,000 is around 1 in 150 kids - not too far off from 1 in 100.
The incidence rates are climbing. When 1 in 150 is really 1 in 67.
Vaccine Autoimmune Project Publication excerpt:
Since February 2007, news outlets have widely publicized the fact that recently released figures by the CDC have estimated the prevalence of autism and autistic spectral disorders at a NEW high of 1 in 150. In this report,
VAP’s co-founder Ray Gallup and Dr. Yazbak examine the most recent United States Department of Education statistics and reveal that the 1 in 150 estimate is outdated by five years. They report that the present prevalence
of ASD may be as high as 1 in 67. We at the Vaccine Autoimmune Project are saddened and concerned to see the latest Department of Education figures.
We are also concerned about what is to come. It is evident that, 1) our medical authorities are more interested in defending vaccination programs than controlling autism, the most devastating and real epidemic we have
faced in a hundred years, and 2) our wealthiest and largest autism association is giving little attention to the role of vaccines and vaccine additives and preservatives.
Read the full, eye-opening story here
http://www.vaproject.org/yazbak/1-in-150-is-really-1-in-67-20071005.htm
Charlie—My now 16 y.o. nephew fell into the category of: “while other forms are noticeable, but do not negatively affect someone’s ability to lead and live a productive life” ; As a baby it took years of testing, doctor’s visits and no answers, until one MD finally said, “It must be a form of autism”…….. He’s happy, productive, (he can recite the back of a baseball card w/ the stats of any baseball player) and recently got his drivers license! The book to which you referred was an amazing read!
Charlie,
Thank you, thank you, thank you for listening!
In year 4 of dealing with my child’s challenges, we hired an au pair to help. He has since learned that there is no
programming private or state funded to help the children and families struggling with ASD in his home country in Central Europe. Those children, human beings, are put in institutions as they are thought to be uneducable. We’ve learned in the US that these children can be educated and can be productive members of society. It seems a basic human right that is denied by many insurance companies.