I had the opportunity to attend a meeting where about 20 children with autism were challenged with what the word advocacy meant to them. Each child in their own way had a very unique and enlightening response, but one child’s response really stuck with me and opened my eyes. Not about what advocacy means, but what it means to these children for us, as a society, to actually take the time to educate ourselves about what autism is.
The little boy looked up and timidly said, “Advocacy means that others are willing to learn. If more people knew what autism was or knew why I acted the way I do, the less time I would have to spend explaining it to them.” He continued saying,”It would make it easier for me to feel comfortable and actually feel like I belong.”
So I left the meeting still thinking about what he said. Is it fair for an 8 year old child to bear the responsibility to teach me about autism in order for him to start to feel like he belongs in society? I am glad he did, but he shouldn’t have had to.
So now it’s my turn, I am going to take his torch and carry it as far as I can, and help others become educated about autism and its affect on people of all ages.
Very simply, autism is a brain disorder, not a disease. For each individual the impact is different which is why it’s referred to as a “spectrum disorder.” The right side of the brain is typically where our emotions, creativity, and expressive thoughts are formed.
In school, we would use the right side of our brains for classes such as art, music, and theater. The left side of our brain is more factual or clinical, resulting in a more “black and white” type thinker. In school, we would use this part of our brain for classes such as math, science, and history. The frontal lobe of the brain is like the “conductor” of our brain, organizing our thoughts, our actions, and sifting through the information that comes from the left and right side of the brain. This part of our brain takes care of our higher executive functioning skills that assist us in processing information and organizing our thoughts and actions.
Most individuals with autism show a strong relationship with the left side of the brain, being very black and white “factual” thinkers (facts the way they see them), have difficulty with social skills, emotional regulation, and creativity outside of their area of interest (right brain deficits), and exhibit real challenges in organizing their thoughts, planning for future events, and self-regulation skills (frontal lobe deficits).
In the year 2000 the National Institutes of Health estimated autism to affect 1 in 500 children. In less than a year the National Institutes of Health updated that number to 1 in 250 children. By the year 2007, the Centers for Disease Control (CDC) and Prevention reported autism to affect 1 in 150 children. In March of this year, the CDC estimates autism now affects 1 in 88 children and 1 in 54 boys. Medical experts conclude that the number doesn’t necessarily indicate a spike in the disorder, but reflects a number of factors including increased public awareness, broader diagnostic criteria, better detection, and a better understanding of the disorder.
Understanding the affects of autism and allowing yourself to learn from these individuals with autism opens up opportunities for us to stand alongside parents, teachers, and professionals as a community passionate about acceptance, awareness and advocacy.
I challenge you to learn more and to get to know the person, not the label.