My oldest son is 19 and was diagnosed with autism, a speech deficit, and juvenile epilepsy when he was seven years old. Under all my son’s quirky behaviors was a little guy who was clawing at the surface to fit in. As parents, we often wonder how our children will fit in, and I am sharing my son’s journey to show the highs and lows that children and parents face at different stages.
In Pre-K, children don’t catch onto behavior differences as much because everyone is still developing at different stages and acting a little silly. It seems it is more socially acceptable if there are some quirky behaviors, so he had more friends and even got invited to most birthday parties.
It was as my son got older that the behavior differences began to show, causing some difficulties. I watched from the sidelines at school fairs, volunteering in the classroom, or going on field trips how there could be avoidance by others due to his behaviors. He would run in circles around the other children, flap and rub his hands together, and shuffle his feet at his desk. He nearly always had a book of some sort with him. He would often interrupt someone to talk about his interests if there was any slight opportunity.
I would get the looks from parents, and I didn’t mind. I am thick-skinned. I didn’t always see the diagnosis, I saw the human that my son was and every amazing ability. It was a problem to me when I would get a look from school staff or when I received a letter home from school because my son was being who he was naturally. I didn’t feel a pressing need to change him any more than another parent would want to change their child. What I did want was for my son to be entirely confident in his mind, self, and body, and that he be as prepared for the world as possible, just as any neurotypical child would be.
I created two things that have stuck with him the longest:
• A daily schedule of what to expect and plan for – making this as detailed as possible.
• A reward chart based on accomplished task – I always put a sticker beside the finished task- allowing that visual to form.
I found it was important to provide positive, verbal reinforcement along with clear limits. For example, it was important to communicate when activities such as playing at the park or playing with friends would end. As he got older, I would use hand signals to display time: if it was 15 minutes, I would flash 1 open palm, 3 times. Reducing the surprises built the strategies in him over time so that he could manage unfamiliar and difficult situations better.
My son was becoming very adaptable to difficult situations, but not in the healthiest ways. I was able to see that he was like a chameleon when he was at school or in public, but as soon as he was in private, he would experience a meltdown. He has been bullied, and as a parent, you would carry that pain for them a thousand times for eternity. It was important for him that we be there for him and remember that he was expressing his emotions and frustrations through his meltdowns. I also had to adjust my strategies and adapt with his emotions.
In middle school he made new friends within a larger EC community on campus than he had ever experienced before, and he felt like he had finally found a place that he could feel comfortable. He never had a ton of friends, but he never placed a numerical value on what a successful amount of friends was either. He found it within himself to join theater before graduating, and this gave him an audience and a place to expel some of his pent up emotions. He was able to get more comfortable with people and groups through the theater program. He also made some bold steps as a self-advocate that we were not used to in our role as his lifetime advocates, but we had to accept that it was time to share the advocacy position with him and be proud of what he had learned.
He has emerged from his middle school and high school years more resilient. We have been there to guide him through those experiences. The planning, the extreme patience, the calendars, the sleepless nights — it all pays off. It just takes time.
I am so proud to say that he has found his voice and his style at this stage of his life. He isn’t rushing life. He isn’t even done growing up. He has a job and he drives a car. Today he has a girlfriend and he has his same group of friends from school. They are extremely close friends who all found each other through similar circumstances, which is probably what binds them together.
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Tags: autism, autism acceptance, autism awareness, autism communication, autism social skills, autism support