I was talking to a speech therapist about a month ago and we had a very interesting conversation about autism. She’s been a speech therapist in the school system since the seventies, and when she started out there were no autistic children in the entire school. None in the entire district. In fact, the first autistic child she helped was in 1991. She said she figured he would be the “one in her whole career.” She didn’t know much about how to help or teach this boy because there were only a few paragraphs in one book she could find on the subject, but she did her best.
The next year, she got another one. By 1995 she had four autistic patients. There were only about 400 children in the school at the time, and she just thought this was an enormous amount of autistic kids to have in one tiny school. She started to worry that maybe our community was an autism hot spot. Sort of like how there are cancer hot spots that sometimes pop up in communities. She was so worried about it that she wrote a letter to some man at Yale University (I cannot remember this man’s name) explaining it to him and asking for his opinion.
He wrote her back and said that it wasn’t just our community. That they were seeing a 5 to 1 rise in autism throughout the entire country, and they didn’t know why. This was back in 1995. I get chills when I think about this because my own autistic son was born in 1995, and I had NO idea this was going on. Autism wasn’t on my radar at all. In fact, the only time I’d ever even heard the word autism was on a public service announcement that used to run on TV, where Sylvester Stallone talked about his autistic son being stuck in his own little world and asking for funding for a cure. (When my son was first diagnosed, Sylvester Stallone was the person I thought about. I bet not many people can make THAT claim…)
When my son was about 20 months old, he pulled a bookcase over on top of himself. While we were at the emergency room, the doctor was VERY excited to find out that my son most likely had autism (at that time everyone told me he had it, but that he couldn’t possibly get a real diagnosis until he was 3. Oh, how things have changed…). This doctor asked if I would mind if he brought in medical students to see him. I said it was okay, so he brought in about 5 students and started telling them about autism and about how they might not ever meet another child with it, so you know, get a good look.
Fast forward 13 years, and I cannot IMAGINE this conversation happening today. I heard that one in every 150 children born in the United States has autism. But if you just count boys, the figure is now 1 in every 99 boys born. The autism rate used to be 1 in every 10,000 children born.
What the hell is happening, and WHY is there not wide-spread panic in the streets? Autistic kids are everywhere these days. Everywhere. And yes, some of them are misdiagnosed but the majority are not. This is not simply a case of better diagnosis’. Otherwise, the school system from 20 years ago would have been overrun with quirky kids who had a hard time getting along with others and who didn’t talk much. And we know this wasn’t the case. Something is going on. Something has changed in one generation. It could be pollution, hormones in our food, it could be ultrasounds. It could be vaccinations (my personal belief). The point is, something is triggering this and we need to find out what it is.
To bring this around to the topic of CBW, Seth has autism in the strip mainly because I wanted to raise awareness. I also wanted to show that raising an autistic child doesn’t have to be all grim all the time. Making Seth autistic was a hard decision to make, but I have not regretted doing it. The Torres’ are far from alone in what they are experiencing. Judging from the mail I receive about autism, it seems just about everyone either knows someone with autism, or has an autistic person in their family. Treatments for autism aren’t cheap, and they aren’t paid for by insurance.
For example, my friend has a child in a wheelchair. Insurance pays for whatever he needs, no questions asked. She also has an autistic child, and he can’t get services from insurance because he has a developmental disability that isn’t expected to get better, so too bad, so sad. Next! I did a cartoon about this once, long ago. Here it is. I’ll end on this note, as I think it sums up my feelings pretty well.
5/5/05
About Clear Blue Water (my comic strip) and me and mine 
11 comments
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October 27, 2008 at 1:06 am
Kate
Well, you know you’ve hit a nerve with me on this one!
YOU ARE SO RIGHT!!!!
I don’t believe it’s thimerosal that causes autism, lest someone come on here and start saying how vaccines are safe since the government removed mercury from them (which, btw, isn’t an entirely accurate statement, but I won’t “go there” since it’s your blog, not mine). I did write a little essay on this topic last April 1st in honor of Autism Awareness Month and anyone interested can find it here: http://lifewithspecialneedskids.blogspot.com/2008/10/autism-awareness-month-originally.html
As for insurance companies and their refusal to pay for autism treatment, you’re correct about that, as well. I find it mind-blowing that my son with spina bifida, Joshua, can get ANYTHING he needs (physical therapy, braces, a walker, a wheelchair, catheters, etc) with no fight whatsoever ~ just have the doctor write a script and presto! We’ve got it approved. But my autistic son, David, can’t get squat in the way of therapy or ABA or any other treatment specifically designed to help autistic children. It truly sucks that so many kids who COULD make good progress & thus wind up higher-functioning than they currently are get left behind because no one wants to pay for the treatments that work to help them.
Siiiiiiiighhhhhh
Love the strip you printed on this topic. So, so true and so, so utterly disappointing, as well.
October 27, 2008 at 5:05 am
Rai
Once had a friend who’s beloved son has Higher Functioning Autism.
She used to comment about the “Trendy” Disabilities. It’s easier to raise funds for Cute kids in Wheelchairs or Guide dogs.
October 27, 2008 at 1:21 pm
Ted Seeber
I’ve seen 4 explanations for the “cause” of the rise of autism, and as an HFA myself, I’m always interested.
#1: Heavy-metal poisoning. Not just mercury. Maybe not a cause, might be a SYMPTOM- that some people just don’t get rid of heavy metals as fast as others. My nephew and myself both show some signs of this, and he’s getting treatment for it (I wasn’t diagnosed until I was 30, and everything says heavy metal poisoning does the most damage to developing brains, so forget treatment for me).
#2: Evolution. As our method of earning a living runs more towards the intellectual and away from the physical, autism and cousins have a distinct survival advantage over other, more physical genetic mutations.
#3: Vaccines, in general, and the effect of a wheat-and-milk based diet on them. Also seen in my family- Isaac has responded quite well to a GFCF diet.
#4: Feminism. As our culture changes towards the female, normal male tendencies towards engineering gets relabeled as a mental illness when none exists.
I’ve got to say- there’s a definite possibility with that last, though I have a tendency to show #3 and #1 as the causes of my personal problems. That last just made my interactions with the opposite sex more cause for punishment.
October 27, 2008 at 2:02 pm
Lyle Gentry
Careful Ted, you may have stepped on a landmine with #4.
I don’t have any idea of what the causes behind the rise in autism rates are but as the parent of a small child in daycare I get really nervous about people not vaccinating their kids.
I’m not trying to pick a fight. I just think that we all need to be extremely careful that we’re following science – not an ideology – when it comes to issues like this. There may be a theoretical link between vaccinations and autism but that has to be carefully weighed against the risks of not vaccinating. There are diseases out there than can and will disable and kill if not held in check.
I don’t think parents that choose not to have their kids vaccinated are bad parents. I’m sure they love their children very much and are doing what they think is right. Just as we were when we had our daughter vaccinated.
As far as the lack of coverage for autism goes I think it’s a national disgrace. It’s one of the many reasons I strongly support universal health care (I’m a conservative that supports a single-payer health plan – yup, we do exist).
October 27, 2008 at 2:04 pm
Tracie B.
I couldn’t agree with you more.
I don’t understand why there isn’t a national outcry regarding the skyrocketing numbers of autistic children being diagnosed? Why is this happening? My son was nonverbal at 2 yrs of age, school based speech therapy was getting us nowhere. We were blessed to be able to explore other options of treatment for him and had a center nearby that specialized in autistic and nonverbal children. My son was evaluated and found not to be autistic but to have severe apraxia of speech. He started receiving specialized speech therapy and lo and behold, started to talk. We paid for most of this therapy out of pocket. We went to this center for several years and I spoke with many of the parents of autistic children also being helped here and their struggles to find help for their children.
It is an outrage that insurance companies will not pay for autistic therapies for these kids, when early intervention can make a huge difference.
Love your strip.
October 27, 2008 at 10:50 pm
Leslie Helwig
Ted, what does feminism have to do with the price of eggs in Boston?
Between my mother and Karen I was scared to death about Kaidis my daughter getting vaccinated. My mom told me that I had better tell the doc to shake the vial just in case. Luckily my pediatrician is one of the ones that stopped using mercury and so far my little bug is reaching her appropriate milestones. I still wonder what the correlation could be. In environmental science class I learned about people in Japan being born with severe physical and mental disabilities from the mercury in their fish. I guess I am glad I am not a fish fan.
Are you sure that that the numbers are rising more than we now have a name Karen? Perhaps there have been more cases than we think, but just had no idea what was going on?
Could it also be that doctors are now just throwing that word around as the buzz word of the new millennium?
Just thoughts.
October 28, 2008 at 12:43 am
clearbluewatercomic
Kate, that article you wrote and linked is so great. You know I love it and plan to link it on my autism page. It’s so comprehensive and thorough, and yet you’ve managed to make it very easy to understand. So I’m tooting your horn. Toot toot! My best friend’s a genius! Toot toot!
Rai, I don’t know if it’s trendy disabilities so much as insurance companies know that if they start paying for autism, they worry they’ll be bankrupt by the sheer numbers of patients requesting services. It’s totally unfair and I don’t know what we can do about it.
Ted, your numbers one and three are things I’ve heard bandied about before. Number two is iffy at best to my reasoning, because it really has seemed to speed up in only one generation. This hasn’t appeared to have been happening over the last 200 years or so, so it probably isn’t evolution. Your number four is ridiculous for too many reasons to name. I hope you didn’t put that there just to cause a reaction.
Lyle, I think you raise some valid points. But, I am one of those parents who have chosen not to vaccinate. Until we figure out what the cause is, I have to go with what I know, and I know that vaccinations are at least suspect, if not downright dangerous to some kids. Because of how severe my autistic son is, I have a medical waiver for him. He will never have to get another shot. For his siblings, I have religious waivers. It’s truly a personal decision. Every parent has to decide what they are comfortable with, and I found my line in the sand.
Tracie B. Preach it sister! I’m glad your son is okay. You’re right about the insurance companies. It is an outrage.
Leslie, I’m glad Kaidis is right on track. What a beautiful and unusual name! I’m sure that we do have better diagnosis now, and I’m also sure that autism is brought up in cases where none exists. But, there’s just such a HUGE number being diagnosed these days that I really feel like it’s an epidemic, and that it needs to be addressed.
October 28, 2008 at 1:41 pm
Ted Seeber
On #2 and #4
#4: “Ted, what does feminism have to do with the price of eggs in Boston?”
Look at the symptoms for ac illnesses sometime- and compare that to what an older generation would have called “Boys will be boys”. Not talking about feelings. Not conforming to “social” behavior. Scratching where it itches (or at least, my “stimming” behaviors really do feel that way). Not paying attention in a classroom setting.
For ADHD and Asperger’s people in my generation, is it any wonder that a few of us males wonder if you’re just putting us on drugs to suppress stereotypical male behavior?
Having said that, I really do discount #4. For one thing, it ignores the real social problems your typical self-involved “3 emotion” child can cause himself or herself in the big wide world. And a lack of tolerance in somebody else does not negate your own need to change.
#2 – Technology-inspired evolution. Evolution doesn’t always happen slowly- and autism does have some benefits when working with computers and high technology. But what we often forget is that evolution isn’t only genes changing- it’s also the ENVIRONMENT changing to encourage those genes, and set beneficial mutations up for success. The mutations might have been there for centuries, but nobody noticed them because all the people with that mutation were institutionalized. Now instead of being institutionalized, a few of them can get work at Apple or HP or Intel, meet somebody of the opposite sex with the same mutation, and have kids. Since they’ve had developmental disorders themselves, they’re way more likely to advocate to get their kids tested and help. And suddenly the autism rate in the Silicon Valley goes from 1:10000 to 1:63 in under 20 years, which also pushes down the overall rate. [sarcasm]Gee, I wonder why.[/sarcasm]
So yes, while #2 and #4 are a bit iffy, there is some anecdotal and demographical evidence behind them.
October 29, 2008 at 10:42 pm
Susan Shyluk
I watched a program on CBC news that really challenged my perspective on autism, called “Positively Autistic.” You can check it out at;
http://www.cbc.ca/national/blog/special_features/positively_autistic_1.html
I heartily recommend watching the program and challenge our asuumptions by listening to people with autism. It has given me a lot to think about.
Susan.
October 30, 2008 at 6:55 pm
Ted Seeber
thanks Susan, I’ll have to watch that. I’m always interested, having been told various things from being wrong all the time to downright evil, how other people grew up to have a positive view of autism.
I wonder if I can get that on DVD.
November 4, 2008 at 10:19 pm
Ted Seeber
Don’t know if anybody is still reading this, but there’s a new theory that explains why autism has exploded in rainy areas over the past 20 years (cable TV!): http://www.oregonlive.com/health/index.ssf/2008/11/can_rain_tv_watching_autism.html