When my son was first diagnosed with autism at the age of four and a half, I was truly concerned about what others thought about his different and strange behaviors. My son looks very much like his typical peers, as many children with autism do. People stared and gave me disapproving looks when he would flap or scream for what seemed to be no reason.
One day while we were in a grocery checkout line, my son began to scream and throw himself on the floor. The woman in front of me told me, “He is too old to behave like that!” I was devastated. What I really needed was someone to ask, “I don’t know how to help, but can I help you?” At that time, being a mom new to the world of autism, I didn’t realize that all of the sensory input in that store was upsetting him. As I gathered my groceries and dragged my son out of the store, I realized I didn’t know how I was going to handle his behaviors in public.
Any time he would flap his hands, spin, pace, scream, cover his ears, or run away, I tried everything I could to make him “behave.” I tried to make him stop it all. I couldn’t stand people looking at us or saying anything to him.
I wasn’t the only one struggling with it all. As my son got older, my husband tried to get him interested in sports. But at the time, my son was only interested in letters, numbers, and lining up toys. And he was obsessed with Barney! Getting involved with father-son activities was not going to happen. When we went out as a family, I watched as my husband tried to keep our son protected from the criticizing looks. Life was even more difficult for my daughter once they both entered school. Her friends did not know what to make of her little brother. She never complained, but I know it must have been difficult when people stared or made fun of him.
Family sometimes can be harder to deal with than strangers. I recently spoke to the parents of a four-year-old boy newly diagnosed with autism. They were devastated, as we all are when a professional tells us there is something different about our child. Their biggest concern was telling their families. They were so worried about how the grandparents were going to react, how they would respond. My family tried to be supportive, but they too had opinions and ideas of their own about my son’s behavior. They had lots of well-meaning suggestions, such as “You just need to discipline him more.” Negative reinforcement never works well with children on the spectrum. And how exactly was I going to get my nonverbal son to understand? I believe most family members want to help and understand but struggle not knowing exactly how. They may be feeling some of the same things you are: overwhelmed, unaware, scared, or in denial. If you have family members who want to support you, tell them how they can do that. Explain to them how autism affects your child. Give them the tools they need to be involved.
As my son grew older and I got to know who he was and learned more about autism, I realized that all of that behavior was communication. He was telling me something. He was happy, sad, anxious, angry, hungry, tired, or all of the above. The behaviors were necessary for him to cope with the world he lives in daily. Stimming is how he handles being overwhelmed, underwhelmed, or bored. As neuro-typical people, we all have ways of coping when we are stressed. We eat, drink, smoke, or exercise, sometimes to excess. As I understood that my job as his mom was to advocate for him, I began to learn that the opinion of others – strangers and family – was not my concern. My son’s well-being was – and still is – my number one priority.
As my son got older and began to gain language to communicate his wants and needs, many of his behaviors and outbursts lessened. He still will stim for many different reasons, but I realized over the years that he doesn’t seem to concern himself with the opinions of those around him, so why should I?!
Once you can simply stop being concerned about what other people think about you or your child with autism, you will learn what really matters. My son is 24 years old now and a happy guy. Along the journey, I learned to be around family and friends who were a positive influence in our lives and who saw wonderful things about my son. I did have to distance myself from those who were not so positive and it was not easy, but again, my family’s welfare has always been the goal.
It took me many years to come to the conclusion that I cannot change the world’s opinion of my son or their thoughts about how I parent him, nor will I spend my energy worrying about it. What I can and will do is support my son as he continues to thrive and grow year after year and help others with autism by educating people who truly want to understand.
Judy Clute, an ASNC Autism Resource Specialist in Raleigh and mom to a son with autism, can be reached at jclute@autismsociety-nc.org.
Tags: ASNC, autism, autism acceptance, autism advocacy, autism asperger parenting tips, autism awareness, autism behavior, autism society north carolina, autism society of NC, Autism Society of North Carolina, Autism spectrum, Autism Spectrum Disorder, Autism Spectrum Disorders