Autism FAQ

To celebrate Autism Awareness this April, I thought I would share some of the most common questions I get from others after they learn that I have a child with autism.

1. Do vaccines really cause autism? Should I get my child immunized?

Wow, I get this question A LOT and I am always terrified of giving advice that might have poor consequences for a child, so I try to give as even-handed and informed answer as possible. My response usually goes something like this...the CDC (Center for Disease Control) claims there is no correlation between immunizations and autism. However, there is a large contingency of parents who say otherwise. There was a recent court case that, in at least one case, linked vaccinations to contributing to a child's autism.

Parent groups (and some medical professionals) contend that the mercury-based thermisol, which is used as a preservative in some vaccinations, is causing autism in children, often after the MMR vaccination that a child typically receives after their first birthday. However, thermisol is no longer used as a preservative and autism rates have not gone down.

MY OPINION...as a non-scientist but fairly informed mother of a child with autism is that vaccinations might contribute to the autism of a small subgroup of individuals with autism. I chose to delay vaccinations for my "typical" younger son until after the age of 3. I felt this was an appropriate compromise between the need for him to be vaccinated against disease and possibility of it triggering autism with his increased genetic risk. Even now, he still only gets one vaccination per doctors appointment. And I so look forward to the lecture I receive from my doctor about how vaccinations are perfectly safe, blah blah blah, every time he is due for a shot (NOT!).

I think it is important to remember that when you go to see your pediatrician, they are not only serving the welfare of your child, but also the public as a whole. This means that they often see the immunization issue from a public perspective. Indeed, it is a good public health policy for everyone to be immunized in a timely manner. Whether it is best for an individual child is up to debate. YOU, as a parent, however, serve the welfare of your child alone...so if you are uncomfortable about the timing and/or amount of vaccinations given to your child, don't be afraid to question it, to walk out of the office, find a new pediatrician if necessary....trust your mommy-sense!

You can read a lot more about the issue here and here and here.

2. If immunizations aren't causing any or all of the autism cases, then what is?

Most experts agree that there is a genetic component, combined with an environmental trigger. There is no such thing as a pure genetic epidemic (think natural selection, Darwin), hence the belief that something in the environment is triggering these cases. Some possible "triggers" include mercury (not just in vaccinations, but in the air), and other preservatives toxins and pollutants. Basically, nobody knows for sure.

3. If you have a child with autism, do your chances of having more with autism increase?

Yes. You often see families with multiple children on the autism spectrum. I read about a family in Utah where all six of their children had been diagnosed on the autism spectrum. The chances of having a second child on the autism spectrum is about 1:8. Almost always, a second child with autism will have a more severe case. Let's just say it's enough to keep me well supplied on birth control. I wish I had enough faith to have another child and know it would all work out, but I just don't.

4. What are the treatments for autism and how effective are they?

The best-documented treatments center around behavioral theory, changing negative behaviors into positive ones and teaching new skills incrementally. We are an ABA family and I like that it is data-driven and tailored to each child's specific needs. Other popular therapies include Floortime, TEAACH, which is used in many schools, and speech and occupational therapies.

Alternative therapies abound....everything from hyperbolic oxygen chambers to chelation to horse therapy. I don't ever knock a therapy just because it hasn't been well-researched, but as parents with limited time and resources to help our child, we have chosen therapies that fit his needs and have proven results using scientific method.

Efficacy of autism therapies vary greatly between individuals, some kids show great improvement and most of their autistic behaviors disappear. Others don't make much progress at all. There are a lot of kids (like my own son) who fall somewhere in the middle. The general rule is that the sooner you can get your child started, the better outcome for success. Unfortunately, very few health insurance companies will pay for autism therapies (even the well-researched therapies), strapping parents with a huge financial burden.

5. What is this autism diet I keep hearing about?

There is a theory that people with autism have trouble metabolizing gluten and casein. It stays in their system, creates a toxic environment, and autistic behaviors result. The autism diet eliminates foods with casein (dairy) and gluten (wheat) from the diet in an effort to cleanse the system of these toxins. Read a better explanation here.

There are a wide variety of outcomes from this diet. There are parents who swear they have "cured" their child of autism through the diet alone (I admit I am a bit skeptical). Others see great improvements in their children's behaviors and cognition. For us, it was an expensive and frustrating year full of cooking, shopping at Whole Foods and trying to make sure Noe was getting enough calories, while seeing no improvement in his autism. That said, I'm still glad we gave it a try. And if you come across a child on the diet, please respect the guidelines of the diet and check all labels before giving food to that child to give the diet its best possible chance of success.

6. Why do a lot of kids with autism have strange, repetitive behaviors such as flapping their arms?

These behaviors are called "stims" or self-stimulatory behaviors. Like many things related to autism, no one knows exactly why they occur. Autism is a sensory disorder, so these stims undoubtedly are linked to the different ways that people with autism experience their senses. I notice in my own child, that if he is not receiving enough sensory input, or if he is bored or tired or overwhelmed, he will start to stim. I also have noticed that if I get him some hard exercise during the day, his stims will decrease.

When my son was first diagnosed, I was obsessed about controlling his stim. I didn't want anyone to publicly see him stimming. I'm not sure if it was because I was self-conscious of my child's differences or if it made his autism more "real" to see it outside our home. Now, my attitude has changed....I don't want him to stim because when he is stimming, he is not plugged into our world and not learning. We do allow him to stim for small periods of time in his room and before bed so he has an outlet for his stress, but we try very hard and keep him plugged in during his daytime activities.

One way to look at stimming is that we all have strange, repetitive habits that make no sense but feel good on some level. Some examples - nail biting, twirling hair....I remember my dad as a "leg shaker"...he always had one leg shaking when he was sitting down. While these activities are socially acceptable, they are just as senseless as the stimming of a person with autism.

7. What causes the frequent meltdowns associated with autism?

Autism is essentially a sensory disorder, meaning that people with autism don't always feel/hear/see things in a typical way. New places, especially places with a lot of stimuli, can be overwhelming and sometimes even a physically painful experience for a person with autism. Some people with autism act out in these situations while others simply shut down. Whenever I took Noe into Times Square when we were living in New York, he would instantly fall asleep. His mind couldn't process all of the input, so he shut down. This made him a really well-behaved baby and toddler....but now I know better.

Some people with autism prefer routines and have difficulties adapting to change. When their routines are interrupted, that can sometimes send them into a meltdown as well.

8. How can I help a friend with a child with autism?

I previously made some suggestions here. I know one difficulty I have is finding sitters who are comfortable with Noe. He isn't very difficult, but it is hard to have to explain all of his quirky behaviors and exactly how we are handling them over and over.

If you have a child with autism in your primary class, ask the child's parents how to best include that child in your class and enlist other children in the class as "helpers." Don't be afraid to explain autism in an age-appropriate manner (or have his parents come in and do it), but don't forget to highlight the child's strengths and special qualities.

My son's primary teacher this year has been such a blessing to us. She goes out of her way to include Noe in each lesson and often includes games he enjoys and things he is good at (matching activities, etc). She also assigns another child in the class as his helper for the day....which has gone a long way in helping the other kids develop a relationship with him.