The Importance Of Autism Awareness Through A Mother’s Eyes

The Importance Of Autism Awareness Through A Mother’s Eyes

By Alicia Taylor

Autism has become such a buzzword today that it’s practically a household word. Words like Asperger’s syndrome slip off people’s tongues in casual conversation. In fact, so many people know it that many people don’t take it seriously anymore. I recently read a touching a news story about a girl who ordered a cheeseburger at Chili’s. It’s Chili’s policy to always cut a child’s burger in half to test for doneness. Arianna didn’t want to eat the broken hamburger and so the waitress brought her another. I was seriously appalled by some of the comments that people made about this seven year old child. Some people even stooped to blaming bad parenting or accusing the girl of being spoiled. “Wait till she’s hungry and then she’ll eat it. No need to encourage rude behavior.” Of course, the accusations flew that the medical community diagnoses too many children with autism and too many parents use it as an excuse for lazy parenting.

Autism Awareness Month LogoI wondered how so many people could be angered over such a cute story with an adorable photo of girl kissing her cheeseburger and telling it that she missed it? I recognize their reactions. My son has an autism spectrum developmental disorder like this little girl and I have experienced people’s ignorance first hand.

If Daniel threw a fit in public, condescending stares pierced the back of my head as I would drag him out of the establishment. The last time he threw himself on the floor in a temper fit, he was 13 years old. Yep – that is not a typo. My son was 13 years old. Was this due to my bad parenting? No. I never gave in to his fits. When he would stomp, scream and break things, there were negative consequences. I am not sure what set him off. There were no demands like a younger child does when they throw a fit for a candy bar. He was not hurt. He just threw himself into the floor and started crying. I told him I was walking home and would meet him outside when he finished. Of course, the pain of guilt washed over me as I felt the javelin stares I had become so accustomed to, and hear the not-quite-hushed whispers people pretended to be saying under their breath. I was on the verge of joining him in his tears and felt like a horrible parent. He couldn’t bear to be separated from me in a public environment, so I knew he would follow me out. As we walked back home, he didn’t speak a single word nor could he couldn’t tell me what happened.

By this time, my son had been diagnosed with autism and PDD-NOS for about 3 years. I knew something was wrong when he was a very small baby, though. He didn’t smile often and rarely looked people in the eyes. He didn’t speak in full sentences on a regular basis until he was almost four – and was not out of diapers until he was four. No matter what I tried, nothing motivated him. His younger brother was out of diapers before he was.

He had very finicky eating habits. Everything had to be just so on his plate. Despite not speaking, he was reading Charlotte’s Web at 7 years old while other kids were still working on Dick and Jane. As he became older, he was a constant target for bullies. On more than one occasion, his younger brother defended him. At 10 years old, he sucked on his pointer finger, chewed on his clothes and wore a heavy winter coat in the middle of Florida heat. He was particular about what material touched his skin.

Hyperactivity was the code for any day of the week. I tried everything from the Feingold diet to medication. Nothing worked. No matter what, he could rip through a room faster than the Tasmanian Devil in a Saturday morning cartoon. He would repeat the same noises over and over. To this day, he flits from one obsession to another. I frequently have to remind him to eat.

autismDaniel is now almost 22 years old. I wish we had been able to get him help sooner, but resources weren’t available at the time. No one had heard of autism spectrum disorders. Doctors just told me he was a little delayed and that I was worrying too much. Despite his obsessions and obvious social integration issues, help was not available for him.

The school system placed him in a special education environment, because he was so far behind socially. His grades plummeted. He brought home the exact same math worksheet every day. My 5th grade child with an aptitude for math and science was suddenly given worksheets on a first grade level. Every day, it was the same worksheet. When I confronted the teacher, she said that she couldn’t accommodate all the learning levels and so taught to the level of the majority of kids in the room. It was obvious that Daniel’s academics were far beyond these children. However, the school refused to place him in a mainstream classroom. In Florida, he was labeled EH (emotionally handicapped) and, in high school, was eventually moved from a mainstream school to a special school for EH kids. Because of the school system’s ignorance, Daniel’s brilliance became stifled.

Daniel made very few friends and generally only associated with boys his socially adept brother played with. Things haven’t changed much. He doesn’t make friends easily. He briefly held a job when he was 20 years old. When they let him go, his employer actually asked to speak to me. I had never had any interaction with him, so it wasn’t like his boss knew me or knew who I was. He tried living on his own for a while in a roommate situation. That lasted about 3 months. The other guys said they had to treat it like a sleep-over situation. He clearly wasn’t ready.

Now, schools offer special programs for children with autism and spectrum disorders. Behavior management classes are available for parents. I frequently wonder how much farther my son would have gone had some of these programs been available at a younger age. I wonder, if doctors had listened to me when he was a baby, would things have been different. There are precious few programs available beyond school years. I am thankful for the ones that do exist. Daniel is even involved with a special arm of Vocational Rehabilitation that works with adults with autism. However, more really needs to be done.

What can you do to help? Learn the signs of autism. If you think your child is experiencing a developmental problem, get help sooner rather than later. Earlier treatment frequently leads to a better outcome.

Be kind. Sneers and jeers at other parents when you haven’t walked in their shoes don’t help the situation. In fact, making them feel guilty when they are probably doing the best they can does nothing but undermine their self-esteem and parenting skills. People like the waitress and the Chili’s manager in the news story would have been a godsend for our family when Daniel was that age.

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  1. Yanko Karamanov says:

    You are not alone. Just people have to change their attitude and open their mind…

  2. Great Post and Very true… about society… I used to work in Group Homes with downs and Autistic kids… So understand all to well some of what You talk about.
    Your Son is LUCKY To have YOU

  3. Read your post as well as my wife. I stand so confused as to how this has exploded over the last 25 years. Have been reading many studies on vaccines enough to avoid them. I applaud your effort to present your view and share your experience with the world. Don’t stop.

    • Thanks so much Nick. I won’t give up. I don’t know how it has really exploded in the last 25 years, and I’m not sure what to think about vaccines. There is so much conflicting information from both sides of the fence. I just keeping pushing for education, as well as change in our education system.

  4. Marty says:

    Alicia, thank you so much for your openness about life with autism was like when your son was little. Things have changed some in the last decade or so but still very little for adults with autism is in place.
    I also learned very early to view parents with children throwing fits in the store very differently after I had Sam than I probably did before. I’m sure that is something that we have all dealt with.

  5. Joe Chengery says:

    Hello Alicia,

    It’s amazing how people can quickly come to conclusions when they don’t know the whole story. It’s too bad that the resources weren’t available for Daniel when he was growing up,, as that could have helped him out socially. Still, hopefully the resources that are available today will still be able to make a positive difference in Daniel’s life.

    Thanks for sharing – best of luck to Daniel and to you!

    Take care,

    Joe Chengery

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