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Where should we focus autism research now?

People ask me about the time when my husband and I first began to notice differences between our second child and our first.

Quinn was an easy kid. We could give him a pencil, and he would play with it so contently, just fascinated by flapping it. Time went by, and when he still wasn’t talking, my husband and I would give excuses: “Well, he’s not talking because he has an older sister that talks for him,” or “Einstein didn’t talk until he was four.” Then we thought maybe he just wasn’t talking as early as his sister did because he was a boy and would develop speech at a different rate than she had.

My husband is a special education teacher, and I am a pediatrician and health sciences researcher. We wondered if Quinn was autistic but then dismissed it. If anything, we thought we were just worried about him having a developmental disability because of our professions. It’s rather ironic. Denial can be a powerful trickster.

When we realized there was really something wrong, we began the series of tests needed for a diagnosis of autism. This was a stressor for Quinn and hard on us as parents. Each test led to waiting for results and more weeks of waiting for subsequent tests. That torturing limbo went on for long months.

Once we received the diagnosis that Quinn was autistic, we assumed he would be mildly affected. After all, he had been diagnosed early and had intensive therapy. After his first year of treatment, we were told his prognosis was poor because he had made little progress despite the intensive therapy. That day I felt like my heart went down a drain.

When you first hear the word “autism” you think, “Wow, this is bad, but my son will be one of those incredible success stories.” Hope persists. Family members would send us stories from the paper or the Internet about autistic children who made incredible breakthroughs, and we said, “It could happen with Quinn.” But then age 13, 15, 17 came and went, and he still wasn’t talking. He’s 18 years old now – handsome and strong – but he still has almost no expressive language.

Through all this, I would often become disheartened. Hope was clobbered. The lifesaver for me was something my husband said – not to focus on the diagnosis, but on our son, the person. Even though Quinn is non-verbal, he’s funny, joyful and an enjoyable person. As a mom, I ache that he can’t do all of the things other kids can do. But when I get over what he is not, and instead focus on what he is, I do better.

The Broken Link Between the MMR Vaccine and Autism

As a parent, you chase the theories you hear about the cause of autism because you have a strong need to know why: and I think most parents want to believe it’s not their fault. So when the theories about autism being linked to vaccines first came out, I understood why parents wanted to believe there was truth to them, and there was something we could have done, or might still do, to make sure our children wouldn’t be affected.

But I’m also a medical professional, so it strikes me as dangerous for people to promote the theory that a vaccine causes autism without evidence and regard for the potential fallout. The scare around MMR (measles-mumps-rubella vaccine) and autism could have terrible consequences. We know that one of the causes of autism is having a pregnant woman exposed to someone infected with rubella virus. The virus can harm the fetus while the nervous system is developing. If MMR vaccine were to be undermined without reason, we could have a rise in rubella disease, more fetuses affected, and consequently, more autistic children.

In order for the MMR vaccine theory to be correct, there are a few giant leaps of faith. First, you would have to believe that the virus made the gut ‘leak’ a protein into the blood stream. You also would have to believe that protein could jump over the blood stream barrier into the brain : and then change the brain in some pretty specific ways. If that were possible, there would be an extremely high rate of autism among kids with inflammatory bowel disease. And there isn’t.

Only three studies have indicated a connection between vaccines and autism. One was by Andrew Wakefield, and it’s been shown that he intentionally falsified results. The two other studies were by Mark Geier and his son, David Geier. Their scientific credibility and ethics have been questioned in several court cases. It’s of note that the state of Maryland recently revoked Mark Geier’s medical license. Outside of Wakefield and the Geiers, research shows there’s no connection. In fact, autism is even rising among unvaccinated children.

Where Should Our Focus Be?

In order to understand what actually causes autism, we need clarification on the diagnosis and classifications within the condition. Modern research shows that one clear cause of autism is genetics. As a parent it’s hard to think that could be the answer. Genetics are hard to understand and change, but this is where our focus should be.

Looking forward, we need to invest in good science, because we need answers soon in order to help our kids. In addition to my autistic son, I have a ‘neurologically typical’ daughter in her twenties. In the future she will probably need to decide whether or not to have children. Families like mine need answers, not only for our autistic children, but also for our other kids as they approach adulthood.

Also, it’s more important now more than ever that we vaccinate our children. We live in a global society. There are more cases of the measles in the U.S. than there have been in many years – the virus knows no borders. Before, primarily the poor got vaccine-preventable diseases because they were unvaccinated, but affluent communities aren’t immune either. Years ago, if you were the only unvaccinated person in a community of well-vaccinated individuals, you might be able to hide from disease. But today, since many of your neighbors have held off vaccinating their children due to their concerns, you can’t hide anymore.

Focusing Energy in the Right Areas

I’ve had 18 years to ponder why my son is autistic, and I completely understand why parents want to believe that vaccines are the cause. That answer would be concrete and would give us a simple plan for future generations: hold off on vaccinating. As a mom, I get that such an answer would be a relief of sorts. But as a pediatrician I have a problem with that answer – it’s been shown to be wrong. And by keeping such myths alive, I believe we’re actually harming our children even more.

We have pumped millions of dollars into evaluating the theory that vaccinations are the cause of autism based on falsified studies and parent reports. Now that that’s complete, we should focus our attention on studying autism’s causes in a scientific way. Our kids deserve nothing less than this.

If you’re a parent facing the reality of living with a child with autism, I urge you to take action to find support for yourself and your family as soon as you can. You will need more support than you realize. My husband and I have been very fortunate; amazing people have come into our lives to help.

And please, parents, vaccinate your children. I’ve seen the effects of some of the diseases we can prevent with vaccines, and you do not want your child to suffer from them. Take it from a pediatrician and a mom who’s experienced both sides.

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