Why I Don't Think Vaccines Cause Autism

It's really amazing how many people are convinced there is an "autism epidemic", who seem to be in a panic over statistics like "1 in 88 children" or "1 in 50 boys". Most point to vaccines as the cause. I really don't think that's the case. Here are a few reasons why:

1. Increase in cases of autism may actually be attributed to a change of diagnostic criteria. In fact, autism rates appeared to skyrocket when the DSM-IV came out and the diagnoses of Asperger Syndrome and PDD-NOS were added, and included in "autism" statistics. So, ironically, the increase was in higher-functioning cases of autism.

2. People think autism is a new disorder, but maybe it isn't. Until just a few decades ago, people who had what we call autism now, were given other labels like childhood schizophrenia. Also, until fairly recently many people with mental and other disabilities were cloistered away in institutions, so nobody saw them. That is why I'm skeptical of educators who testify that 30 years ago, they hardly saw any children with autism or other learning disabilities, and now they see them all over the place. Could it simply be that those children had not been in the education system before? Maybe they were in institutions or special schools where they were ignored. Also, I think it extremely likely that perhaps in medieval times autistic children were labeled "changelings" or "demon-possessed" and possibly killed or moved to almshouses, with maybe some higher-functioning individuals passing for "eccentric". (Incidentally, I also think another simple reason we see more disability today is that more disabled people are surviving conditions that would have killed them before. Premature babies used to die, now we have the technology to save them and often they end up having disabilities. Before insulin was discovered, people used to die of diabetes, and now they survive to pass on their genes, so I don't necessarily think increases in type 1 diabetes are caused by vaccines either.)

3. I think that the argument that autism is caused by "toxins" in vaccines will always tend to portray autism in an unnecessarily negative light. If being autistic meant that your brain had been "poisoned" then there would be nothing good about autism, when in fact there are many things autistic people are better at than neurotypicals (along with things we have more trouble with, of course). I think that particular argument is ableist by nature.

4. If there was an "autism epidemic" you would expect to see just a smattering of autistic adults and zillions of kids being diagnosed. But many people say that adults are being diagnosed at the same rate as children. That sounds like the diagnostic criteria are broadening, and adult autistics who were able to "pass" in society but maybe still had some struggles are being diagnosed now.

5. Lots of studies have shown that autism has the same prevalence worldwide. Now, I would imagine that different countries would have slightly different vaccine schedules, so if autism was caused by vaccines the prevalence would be different for each country.

I think people make a big deal about autism because the cause is unknown. It seems likely to me that autism will turn out to be something like Down syndrome, only way more complicated genetically, and maybe some environmental factors as well. It would be ridiculous to say anything "caused" Down syndrome because we know that it is present from conception. But we don't know that about autism, so everyone has their own theory on the "cause", and each one is different. Hopefully science will sort that out one day.

Finally, I want to make a clarification. I think that just as we are expected to respect the religious and political beliefs of others, we should be respectful of other people's opinions on the topic of vaccination. I don't believe the issue is as black-and-white as many people make it out to be. I don't think anyone really "wants their children to die". I myself think that the flu shot isn't effective and the Gardasil vaccine isn't tested enough, but think most childhood vaccinations are a good idea. Others may disagree with me, and that is all right. I really want the "bashing" on both sides to end!

A personal history of the R-word

When I was in fourth grade, I was moved to another school and put in the Quest program, which is for gifted students. So I was in a class full of other "smart kids" like me. In a lot of ways I fit in better there, but one thing I quickly noticed was that in this class, in the Quest program, all the kids (especially the boys) said "that's retarded" about things they didn't like. They didn't use the word to describe people, it was mostly objects or ideas. That was all back in the days when I knew I was different, but didn't know the word autism. One day I used the word "retarded" the same way everyone else did, and a few boys were so surprised that I would use that word. Perhaps they thought of it as a little "naughty", a little "edgy", didn't expect a girl to use it, didn't expect me to use it. I don't know. Understanding these sorts of things is hard for me.

During those years my family would purchase a pool pass for the whole summer, and go swimming several times a week. One year, on certain days a bus would come to the park and to the pool with kids in some sort of special-ed summer program. One day I think one little boy from the special ed program lost a toy, or something like that, and we had to return it to him. I remember he was in the line for the water slide. He answered us with odd speech, muttering someone else's name. My mother whispered to me, "I think that kid might be a little bit retarded." I retorted, "That's not a nice thing to say!" She tried to explain that she didn't mean it as an insult, just a descriptive, clinical term. Part of me understood, but another part thought it still wasn't a good thing to say.

Middle school was extremely hard for me. I was still in the Quest program, but had some electives with the "normal" kids, and they didn't understand me as well. They were mean to me a lot, and generally said things I couldn't comprehend. Even the kids in my own class, especially the boys, started to be different. A few of them started talking about sex all the time, which made me extremely uncomfortable. It was very hard in a lot of ways. I started to rock and bang my head, and hit myself, and in lots of ways act more "autistic". A couple of boys in my Social Studies class would say extremely upsetting things to me, causing me to bang my head on the desk so hard i got bruises on my forehead. The teacher in that class kept leaving for long stretches, leaving us to do our work by ourselves. Worst was the school bus home. People would say very upsetting things to me, and seemed fascinated by my strange behavior. They spoke to each other, not to me, saying things like "Is she retarded?" They also used the word "crazy" a lot. How was I to know those were ableist slurs? I knew nothing. I just thought, "of course they think that, they don't know me. They don't know how good I am at math or that I'm first chair in clarinet". I didn't blame them, because I knew it must look to them like I was "crazy" or "retarded".

Now I have been home schooled for years, and know I am autistic, and lots of other things. Many things have happened to me, and in many ways I am almost a different person. And now I know that "retarded" is no longer a clinical term, that has been replaced with "intellectual disability". Now I know that calling someone "retarded" or "retard" is about as bad as calling a black person the n-word. And I think I can understand that people with intellectual disabilities are not less human than the rest of us. I have made a promise never to use that word again. And that, I think is good.

Book Review: The Speed of Dark by Elizabeth Moon

So I just finished reading The Speed of Dark by Elizabeth Moon. Warning: if you have not yet read this book, this blog post contains spoilers. For the background, this book is set in a society not all that far in the future, in which all genetic defects are cured either before birth or in infancy. The main character is a man named Lou Arrendale, an adult autistic who was born too soon to benefit from the "cure" and lives independently, working in a supported environment.

The main conflict in the story is that some researchers appear to have come up with a way to "cure" adult autistics and make them nonautistic - at least it worked in primate studies. But Lou's boss, resentful of the special support granted to his autistic employees (claiming it isn't cost-effective, even though most of the supports don't actually cost that much and are already paid for), threatens to effectively fire them if they don't volunteer for this experimental treatment to cure autism. (Lou has a group of autistic friends who work in the same place and they all hang out together and receive therapy at the Center.) Lou feels he cannot make a decision about this unless he understands exactly how the treatment works, which would entail an understanding of the human brain's inner workings, which he was told he lacked the mental capacity to understand. Eventually, with the encouragement of his fencing coach, he starts reading biochemistry and neurology books and finds he can understand them quite easily, which confuses him a bit as he was always told his brain was "broken" or "defective". The book strongly hints that he in fact is brilliant and has an extremely high IQ. During this process, he learns, much to his surprise, that his brain works the same way a normal brain does in most aspects, and is not entirely "wrong" at all - just a little slow in some regards. He learns about the sensory integration systems and those sorts of things. He also suspects that the research has a more sinister motive: giving a "normal" person some traits of autism to achieve better productivity in the workforce.

Eventually, Lou's boss gets called out for ethical violations (no surprise, SO glad it was still against the law in that society!) and the autistic employees of the company are still allowed to take part in the research study if they want to, but it is completely voluntary, and they won't be fired if they choose not to. Their are mixed feelings among the group of autists. One man wants the "cure", a woman steadfastly refuses. All of them wonder if in becoming nonautistic, they would cease to be themselves. There is no way to reverse the operation. Eventually (and very much to my surprise), Lou decides to take the plunge. From there, once he walks into the research lab to have the operation, the next chapter begins. At first it reads a bit like Flowers for Algernon in that Lou's thoughts are extremely simplified. He remembers nothing from his old life, but becomes more mentally capable each day as his neurons are reprogrammed. The doctors declare the operation successful, because even though his mind appears to be starting over from infancy, he is learning more each day and enjoys social interaction. His friend and fencing coach, Tom, who didn't want him to have the treatment, comes to visit and is horrified that Lou no longer recognizes him, and sad that his mental capacity seems that much lower. The doctors say horrible things, that the operation is a "complete success" and "even if he never regains his old memories he'll be no worse off than a brain injury patient, and will be fine as soon as he learns basic life skills again" and "if his IQ drops by 10 or 20 points he'll still be able to live independently, and at least he won't be autistic". They steadfastly denied that he was a genius. Eventually Lou regains his old memories and his mental ability. He has a breakthrough in which he begins to perceive his old, autistic self as an alternate self, or a voice in his head. He goes on to go back to college to study astronomy and astrophysics, with the dream of going into space. He expressed this wish prior to the treatment.

This was an extremely thought-provoking book. It made me think of all the ways in which the autistics were constantly made to feel inferior, "less than", despite the simple fact that they were able to do certain kinds of work better than neurotypicals. I also think the autistic main character was rather positively portrayed compared to some other autistic characters in other books which in the opinions of many, were portrayed poorly and gave a stereotypical view of autism. I liked how Lou went to church on Sundays and believed in God, because it seems that in a disproportionate number of books portraying autism, a lot of autistic people are atheists. I do not think that is an accurate reflection of the faith of the general autistic population.

I highly recommend this book. If nothing else, it will make you think hard. Also, there are a lot of details in the book which I left out in my brief description, so it's still worth reading even though I gave away the plot!

Another problem with Autism Speaks

So I was on the Autism Speaks web site because I wanted to see some new, controversial video. I couldn't find it, but I did find that they were selling blue compact fluorescent light bulbs, probably for some fundraiser. (What is their deal with blue standing for autism, anyway?) All I could think of is how unhealthy those sorts of light bulbs are, and how they can cause migraines. It seems very plausible to me that some autistic people would be negatively impacted by CFL bulbs, as fluorescent lighting in general is known to be a problem. So do they not even care about that? I don't know, it just bothers me a little.

My new weighted Platypus

The web site Special-ism had a giveaway for Paddy the Weighted Platypus (from The Sensory Gallery) and I won! My platypus came in the mail yesterday. It is very cute and huggable. The weight is not at all like I expected. I thought it would be like a soft brick on my lap, but it is actually more like a purring kitty that doesn't get up and leave, or a firm, gentle hug. It is supposed to increase serotonin, which I definitely need! Right now I have the weighted platypus on my lap and am crocheting a baby blanket for charity and listening to a calming radio station on iheart. BTW, I think crocheting is a good stim/fidget. Pretty relaxing.

Why I like Fiber

I am 18 years old and I have autism. I have been spinning wool since I was 15 and knitting since I was 11. There are several reasons I will list here why I think fiber arts are good for people with autism. 1. Texture. There are a wide variety of fibers: wool, alpaca, angora, mohair, bamboo, etc., and they all feel different. Some are smooth, some are fluffy, and fortunately quite a lot of them are soft, which make for good non-scratchy clothes. Nearly all of them are a fascinating sensory experience. 2. Fidget/stim. Knitting and spinning are both something to keep hands busy. Spinning especially is a pretty good stim that happens to be productive. 3. Visual appeal. Many fibers and yarns are dyed in pretty/interesting colors and have interesting textures. This = fun. That's all I can think of right now, but maybe someone else can think of others?