Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

4/6/08

What Is Autism Awareness?

I wonder this, seeing as we are now about a week into "Autism Awareness Month," and a couple of days following "World Autism Day." How will such awareness affect my child, and other autistic children and adults throughout the world? Will new support services, better educational and vocational programs, beneficial extracurricular activities or anything else of real benefit come to this population of individuals? Will a day of special programming on CNN, fund-raisers at Toys R Us, etc. truly educate the public and make others "aware" of autism (and more importantly of autistic adults and their needs)? Will other parents be more understanding when my child has a meltdown in the grocery store? Will children be more likely to engage with their autistic peer? Will anyone gain anything from all this supposed awareness?

AutismVox has a wonderful post entitled, "Vaccine Awareness from David Kirby," in which Dr. Kristina Chew ends with this:


If we’re going to be “aware” of autism, it’s not vaccines that should be focused on, but on autistic children and autistic adults themselves and their needs, and how we can best teach, help, and understand them.


I couldn't agree more.

In Kirby's piece, he speaks out against the CDC, as well as pediatricians in general. Blaming your physician for giving your child vaccines is like blaming the McDonald's cashier for your being overweight. You have the right to educate yourself on the fat content in a Big Mac, just as you have the free right to investigate vaccines. You can easily opt to not go to the drive-thru, just as you have the right to discuss your concerns over vaccines with your physician. You have the right to opt for your own "vaccine schedule." If your child's doctor disagrees, or will not support your preference, simply switch doctors. I've had to switch doctors once for my daughter. Her first G.I. doctor was just not clicking with us, I felt like he wasn't hearing us out and preferred a lot of invasive testing over more obvious issues. So, we switched, and found a fabulous stomach doc for my daughter. It was my right.

Our pediatrician is nothing like those that Kirby says have emailed him, irate over having to take more time to discuss vaccines with their parents. I remember very clearly, my daughter's 18 month well-visit. At that point, my daughter had been diagnosed as "developmentally delayed" for a year, she had been in therapy for nearly that long as well. By 18 months, she had several diagnoses, both neurological and physical, as well as the description of "autistic features." I had read tons of information on autism by that point.

Once the exam was done, we had our questions and concerns discussion with our doctor. Then, came shot time. My physician presented me with a choice, "Do you want to go ahead and have her receive the MMR shot today? I'm going to give you a choice, given all that is going on. I feel she should receive it, but it is up to you." I told her I had read about shots, autism, etc. and felt that for my child, receiving measles would be a real risk. Maybe I am a rare case, and just lucky to have a fabulous doctor. There's a reason why we drive nearly 40 minutes for her. The bottom line is that we do have the option of picking new doctors, of driving distances to find people we trust to care for our children.

There are plenty of physicians who do not bully their patients' parents into getting vaccines. And, ultimately, it is our responsibility as a parent to do what we feel is best for our children. And, how we come to that position, of what we feel is right for our kids, should come from factual, scientific evidence. We shouldn't be basing our decision on vaccinating our children on a journalist's or actor's point of view.

5 comments:

kristina said...

And there are plenty of physicians who are glad to answer questions and even hand out their emails! (That is Charlie's neurologist.)

I've taken Charlie to the same pediatric practice for several years. The nurses who answer the phone have been so helpful and are always willing to talk and hear about things, and have often scheduled Charlie for a same-day appointment with no questions asked. They see lots of autistic and special needs kids and it's not easy, but they and we deal.

I really don't think Charlie seeing any of the CNN programming would have had too much of an impact on him.

Thanks for the mention!

S.L. said...

Exactly--we have sought out the best docs, ones we trust and ones we connect with. We too have had a similar experience with our pediatrician. If a parent is unhappy with the care they are receiving, look elsewhere.

If my daughter had caught anything on CNN, at her age especially, it would not have made an impact. I mostly wonder if the coverage will have any effect on anyone...will anything actually change come this May? Me thinks not! Well, like you said, the only thing that may come out of it is "vaccine awareness," and fewer kids being protected from dreadful diseases. Thanks for your comments!

Anonymous said...

We went through many pediatricians but it was always because we would reach a point where they did not know what to do and had no idea what was wrong. I got tired of being told that I was not stimulating my child enough. Most were willing to talk about shots and scheduling. We even put off M's shots because she was so sickly. We now have an office we like and a neurologist who calls us back immediately every time. It took almost nine years to find one though.

Jo Ann said...

I can, do and will continue to keep the doctors of my son and husband on their toes. (Both ASD)

However, I hope awareness reaches teachers, students, family members, and others. I am tired of the ignorance!

Ellen said...

Oh my god, there is really much useful information here!

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