My husband and I recently decided that it was time to have "The Talk" with our son. Well, not that talk. The autism talk.
At the age of three, one of our twins was diagnosed with Autism Spectrum Disorder (ASD). We immediately scheduled a second opinion. Then insisted on a third. All three experts independently confirmed what we feared. Our son had autism.
We had no clue what this meant. I had never known anyone who had autism before and I'm ashamed to say that the term conjured images of people rocking and growling and refusing any social interaction. So I did what any mom does in such a situation. I googled. My feeble attempts at unraveling the mystery of my boy left me more confused and disheartened than I had been before.
I love the quote, "If you've met one person with autism, you've met one person with autism." Although there are many similarities and symptoms that clinicians use to diagnose the condition, it is considered a spectrum disorder for a reason. The diversity within the spectrum is vast and there is no one-size fits all approach to treating a person with autism.
We have made many mistakes along the way. I read one parenting book insisting that your child make eye contact as a sign of respect and to prove that they were listening. I remember trying to force him to look me in the eye and becoming so frustrated when he refused. I saw it as outright rebellion and it infuriated me. If only I could go back and do things differently. How much kinder, gentler and more patient I would be with him. With both of them, in fact.
Our son (and his sibling) have attended therapy and weekly social skills group since the age of three. We have been blessed with the most amazing and helpful therapist on this earth. What a blessing and encouragement she has been to not only my son, but to us and his twin over the years. Her sunny disposition, positive outlook, and making much of his strengths while working on his areas of struggle have been invaluable to us. He doesn't remember ever not going to therapy, so I don't think it ever occurred to him that not everyone did. It was just our normal.
But, for the last few years, it has become glaringly obvious to my sweet boy that he is different. He didn't know how to verbalize it, but I could see his frustration. He would watch his twin effortlessly master a skill that he wasn't even ready to start. The give and take of friendship that came naturally to his brother was much harder for him. He required much more direction and discipline. I noticed that he was setting up a system in his mind where he was the bad one, and his twin was the good one. With him, and most kids with ASD, there is only black and white. There is no grey.
The last few months, many of his behaviors have escalated and become much more extreme and obsessive. I won't go into detail in order to respect his privacy, but we were at a loss. When we rang the new year in with yet another horrific meltdown instead of the embraces and merriment that I had envisioned, I knew it was time. Weary and worn, my husband and I decided that tomorrow was the day. We had to have the talk.
We had discussed this previously with his therapist. When was the right time to tell him about his diagnosis? The right way to tell him? Concerned that he would fixate on it, she encouraged us to wait a bit. But we felt that January 1, 2014 was the day. We could no longer allow our boy to believe that he was "bad" or "stupid" or any of the other things that he would often call himself when he failed to get something. And we believed that the negative perception of himself that he had developed was a huge contributing factor to his behavior.
I wanted to share this (with his permission) for all of the other moms out there in the same boat. I have met many of you in the waiting room at therapy or chatted with you on message boards. Many of us struggled with how to tell our kids that they have a diagnosis. What was the best approach? What was the optimum age? Here is what I did, and so far, I think that it has been a positive thing for our son. There are many strong opinions, especially in the Christian community, about labeling kids. Each parent needs to prayerfully make their own decisions about what to tell their kids and when. For us, the time had come and we see this "label" as no different than a child with diabetes or a peanut allergy.
We decided to divide and conquer. My husband took our "neurotypical" son out to talk to, as well as let him him voice his feelings about being the sibling of a person with ASD, which is often a difficult and frustrating role. I took the other one to his favorite dive, Waffle House, to have our little chat. My palms were sweaty and I think he could tell that I was nervous. I did not want to screw this up and scar him for life.
In preparation for our talk, I had listed approximately ten of the more common symptoms of ASD on a piece of paper. For example, difficulty maintaining eye contact, fixating on objects or subjects of interest, difficulty with fine motor skills... I explained each thing on the list and gave him a highlighter. I asked him to highlight the areas that he felt described him. After much thought, he highlighted each one.
On the other side of the paper, I listed the positive and wonderful things about him. For example, his unparalleled memorization skills, his interest and knowledge about fascinating things such as Angler Fish, the game of Clue and Rod Serling. Oh, the trivia that I know because of this child! I explained that God had made his brain different than most people. That in some ways, it was better. And that he struggled in certain areas not because he was bad or stupid, but because it was just the way he was wired. I told him how grateful we were for the unique way that he thought and for his perspective on things. I gave it a name. Autism.
I tried to gauge his reaction. He seemed relieved. After asking a few questions, he enjoyed his waffles and didn't say another word about it. Over the next few days he flooded us with questions. Great questions. He openly discussed autism with his twin, who had known about his diagnosis years before. It felt so good to have it in the open instead of tip-toeing around it and treating it like a dirty secret.
His struggles have not magically ceased, but I do believe that he perceives himself in a much more positive light. He gives himself more grace. He has become fascinated with Dr. Temple Grandin. We have watched her movie many times as well as clips of her speaking about the wonders of the autistic mind. He likes to quote her. "Different. Not less."
I share this for parents of kids like my boy who are grappling with when and how to divulge this sensitive information to their special kids. There isn't a lot of out there on the subject, and every child is completely unique. It is so fitting that a puzzle piece has been chosen to represent autism awareness. These kids are indeed precious puzzling creations of God that baffle, amaze and keep us on our toes. Pray, ask for the opinions of those who know your child best, and trust your instincts. God has given you this child for a reason, even if you are, like me, a most blessed mess.
