Autism rates have risen to epidemic rates of 1:88, and 1:54 for boys. Joanna Schroeder investigates what we can do to help alleviate the problem.
That’s a staggering number. 1 in 54. It almost takes your breath away. When I was in high school there was one boy I knew with Autism; a sweet, earnest kid with an excellent singing voice. Other than him, I didn’t know anything about Autism.
When I first got pregnant in 2004, I had a plethora of concerns, but Autism wasn’t one of them. The day I peed on a stick and come up with two blue lines, I’d also had two Vodka and Sodas, an ungodly amount of sushi, a half pack of Marlboro lights, and at least one whole milk triple latte. For the duration of my heretofore-unsuspected pregnancy I’d been standing for eight hours in four-inch heels, climbing ladders, chewing tons of gum with aspartame, and barely sleeping—I was working 40+ hours a week and putting myself through college as an adult at UCLA.
I was obviously doing everything wrong. But the moment those two blue lines showed up, and Ivan ran into the bathroom with happy tears in his eyes, all that craziness stopped. We wanted to do all we could to protect our future baby from anything we could possibly control.
The last thing I was worried about was Autism, but the moment I went online to research due dates and maternity jeans, one thing kept popping up: Autism. What was causing it? Agricultural runoff in the ground water? Vaccinations? No one knew. It was terrifying to think of something we couldn’t control.
These fears multiplied when I found out I was having a boy, as boys are diagnosed with Autism at a much higher rate than girls, and no one really knows why. Our sons have not been diagnosed with Autism, but we know many children who have been.
Last week new data was released that puts the diagnosis rates for Autism at 1:88 for both sexes and 1:54 for boys. WebMD explains the following:
“The increase in prevalence is only partly explained by the broadening of the diagnosis, improved detection and more awareness,” he said. “A large proportion of autism, some 50%, remains unexplained.”
One hint comes from data showing that autism prevalence is higher in areas where doctors are better at diagnosing autism in kids with relatively high intellectual ability.
The CDC’s huge multi-year Study to Explore Early Development (SEED), begun in 2008, is exploring various autism risk factors. The very first results should start coming out later this year. But since SEED follows kids from the time of their mother’s pregnancy, it will take time for the study to mature.
It’s known that autism results from a complex interaction between genetic and environmental influences. But it’s not known which types of autism are most closely linked to which factors.
A neuro-biologist friend of mine and I were musing on correlational changes in the last 20 years, such as the extended use of birth control pills (imagine the 37 year olds having babies now have probably been on birth control for 20 years) or even the use of antidepressants during pregnancy, as approximately 6% of pregnant women use antidepressants while pregnant. But as of now, everything revolves around theories.
For now, our focus should be on getting Early Intervention for all children who land on the spectrum. As it stands, the wealthier the family, the better the treatment.
Mark Roithmayr, from Autism Speaks, explains that Autism diagnoses rising to 1:88 now ranks the disease as an epidemic. This fact is even more urgent and alarming when you consider how high the risk is for boys.
We are dealing with a national emergency that is in need of a national strategy. At 1 in 88, we now have over 1 million children directly affected by autism. According to a newly released study the annual cost of autism in the United States is a staggering $126 billion annually, more than tripling the cost analysis from six years ago.
Behind all these statistics are real families, real individuals struggling each and every day. Some with autism are struggling to find satisfying jobs where they can productively use their talents and abilities. Others with autism have extremely complicated medical and social challenges. Make no mistake though, wherever one falls on the spectrum, all with autism struggle each and every day. And it is clearly time we, as a caring society, commit to a National Strategy. A comprehensive National Strategy that substantially increases all efforts to date.
A call to action that:
- Funds more basic science uncovering the genetic underpinnings of autism.
- Funds more environmental research detecting the causes of autism.
- Accelerates the funding and development of effective medicines and treatments.
- Commits to a strategy where all children with autism from every background are diagnosed no later than 18 months of age.
- Commits to a National Training Corps recruiting more therapists and service providers as well as specially trained teachers and teacher assistants into the field.
We also need to address the growing issue of adults with autism specifically around continuing education, employment, housing/residential living and community integration. Here too, we need a focus on a National Training Corps to recruit and train professionals to work with our adults.
And that’s the bottom line: Early Intervention, education, opportunity, and hopefully—one day—prevention, for the sake of our boys who are suffering during this epidemic that most adults ignore or feel helpless against.
What do you think? Do you have any theories on what has caused this spike in Autism diagnoses? What can we do to help better understand and assist the boys and men in our society who have this condition?
Photo courtesy of SeRVe Photography
Here is an additional view, from one of my autistic FB friends (and yes, Eagle, I prefer ‘autistic’ too.)
I am Autistic. And I like who I am just fine.
“The logic here is simple; I would think as follows: If “autism = bad,” and “me = autistic”, then “me = bad” must be true.”
This is why you must accept the label, and stop saying how much you hate Autism. Your children are listening.
“This is why you must accept the label, and stop saying how much you hate Autism. Your children are listening.”
This is VERY important and meaningful for parents to learn, Andrew. Thank you.
You are most welcome. There are more than enough self-esteem problems for a young autistic to have to deal with, without getting that kind of meme from their parents :-).
Joanna: “I’m certainly never going to tell someone who has autism that I know anything more than they do about it! And I’m by far NOT an expert. I just know mothers and fathers of kids who have autism and this is how they relate to it. And I would never say your autism was irrelevant, nor do I think that at all.” I apologise if that was a little to direct. This is something I’m as passionate about in equal measure as I am about getting male survivors recognition and support. Joanna: “Interestingly, the families I know don’t like… Read more »
Joanna: “I think there are so many, many different forms and severity of autism that the lowest-functioning people cannot be put in a category with someone like yourself or the guy I went to high school with (whom I’m still in contact with).” Joanna, I have to take issue with this statement. Just because I happen to be high-functioning doesn’t make my being autistic irrelevant. Nor does it seperate me from the ones labeled low-functioning or put up any barriers. Why? Because, in the end, it’s the same system regardless of functionality. The only difference is, I was supported to… Read more »
Again, Eagle, well said! Autists UNITE!
I’m certainly never going to tell someone who has autism that I know anything more than they do about it! And I’m by far NOT an expert. I just know mothers and fathers of kids who have autism and this is how they relate to it. And I would never say your autism was irrelevant, nor do I think that at all. Interestingly, the families I know don’t like to say their child is Autistic, but rather to say they, “Have Autism”- as in, it’s not who the child IS (Autistic) but something they have, like Diabetes. So if you… Read more »
Well said, Eagle!
I’ve said it before and I’ll say it again. As an autistic person myself, I don’t find Autism a problem. It’s not an epidemic, disease or dehibilitating illness. It’s a mode of thinking, processing information, and expressing. If you’re talking early intervention, what form are you suggesting? Because there are many types of early intervention out there. If you’re talking about rote memorization or behaviour modfication, that doesn’t address the autistic person’s needs. Instead, it fosters robotic obedience and dependency on rules which will get them no where in life as individuals. I’ve worked with autistic kids for years now,… Read more »
Eagle, I love that you made this comment. First, of course, we should ALWAYS value our children for exactly who they are. By Early Intervention, I mean of course the type that helps children with challenges they face… My own son is about to start an EI program and THANK GOD for it. He isn’t autistic, but I have known many autistic children the ages of my sons and a bit older. I think there are so many, many different forms and severity of autism that the lowest-functioning people cannot be put in a category with someone like yourself or… Read more »
Autism is incredibly hard to diagnose. It also crosses into a gray area of what it is to be human. If autism-like symptoms are hard coded into our DNA then at what point do we consider it a disorder?
I’m a little skeptical of these figures.
http://www.nytimes.com/ref/health/healthguide/esn-maleinfertility-expert.html
“For men over 40, there’s almost a six-fold increase in autism disorders in their children compared with men under 25.”
I don’t think there is any increase in real incidence of autism. I credit the increase to two factors (both of which I think are good things.) 1) Since the 1960’s many of the children which would have been identified as either psychotic or mentally retarded (nasty words!) are now understood to lie somewhere on the autism spectrum. 2) the acceptance in 1994 of the work of Dr. Hans Asperger (i.e. Asperger’s Syndrome) which is giving a better understanding to many of us who grew up being treated as either ‘weird’ or having some moral defect. The most hopeful thing… Read more »
I think a lot of adults with Asperger’s are still undiagnosed due to the cost a doctor’s appointment. I rather suspect myself of having it but I’m not sure if a diagnosis would be worth the cost at this point in my life.
I am dating a man who’s been diagnosed with Asperger’s and I have to say that I wouldn’t want him any other way. He’s said that he’s glad he has it; there are some areas in which he is rather talented and other areas about which he can feel humble.
I totally agree.
I’ve also heard it said that many people are successful BECAUSE of their Asperger’s and if they’d been diagnosed young, and treated “out” of their Asperger’s (if possible) they wouldn’t necessarily have had their particular huge successes. My family is full of these insanely smart scientists who are leaders in their fields, and they all talk about how many of the most successful scientists would now be diagnosed as having Asperger’s, and the particular traits that would get them diagnosed are what make them so good in their fields.
There’s the thing, psychological disorders should always be diagnosed in terms of their impact on the patient’s life. Fear of the dark isn’t a psychological disorder, being so afraid of the dark that you can’t sleep is.
Maybe autism is similar?
I am chasing a solution to this question right now (it looks like a blind alley). The data on autism shows lots of patterns, but few trends. This usually happens when we are missing a really big piece of the puzzle. Age and heavy metal poisoning are examples where there is a clear pattern (spectrum children differ from their unaffected peers), but no trend (the difference does not tell a clear story). This has led to lots of ham-handed hysteria (eg vaccination fears). What it has not done is help with solutions. For what it is worth, if my wife… Read more »