When our son was a toddler we tried desperately to get testing, guidance, direction for this quirky little genius we were raising. We were living in North Carolina at the time. All the developmental pediatricians and behavioral experts would say is “Bless his heart, he’s so smart!” A wonderful preschool director shared her own son’s challenges with me and supported our journey as much as she could. But the answer was clearly, you’re doing the best you can to help your son no matter how inadequate that feels.
We moved to Chicago when our boy was five years old. It took two more years to get the schools to say there may be some challenges for this guy despite his academic and intellectual brilliance. We got an ADHD dx and a heavily behavioral-focused (and blame/shame) IEP for him at 8 years old. Not one teacher, pediatrician, OT or therapist ever said the word autism to us though we had multiple appointments weekly trying to meet his social/emotional needs on our own with no real plan or expected outcomes. We felt like we were grasping at straws and very alone.
Finally at 11 years old, a double board-certified psychiatrist/neurologist said, “This is Asperger Syndrome, a form of high functioning autism. But DO NOT tell the schools. They don’t know what to do with it and will simply ostracize him. (Like they were not already?) Tell them he has ADHD and anxiety and that’s what we will put in his medical records.” I asked what we should do differently, and she said you’re already doing everything you can for him that’s available. We continued to muddle through on ADHD and anxiety treatments, throwing in Executive Functioning tutoring in the eighth grade. We never felt like we were doing enough for him.
When he started high school at an all-boys Catholic High School in the honors program and with special education supports, we FINALLY met people who knew what to do with autism. They insisted that we acknowledge our son’s autism despite our protests surrounding ADHD and anxiety, and told us “There’s a special place in heaven for parents who work so hard to protect their children.” More importantly, they taught us what a disservice to our son it was to not honor who he is for ALL of this gifts and challenges and his unique worldview.
At 14 years old, thirteen years after we started seeking help for our quirky, adorable, funny, whip-smart son, we found the people who could help us get him the supports he truly needed. And man, did he THRIVE! High school were the best years of his life.
But by that time, so much trauma had been done to both our son and to us. The same high school priest that told us our son was autistic also saved our marriage, which was crumbling under the strain, by sharing that he thought my husband was also autistic. Looking at both of them in light of who they truly are was how I developed my strengths-based person-centered methodology for how we support people within Alpine Square with our teams of neuroinformed partners. However, I still kick myself daily for not pushing harder when our son was very young to get an accurate picture of what we were working with and get him early interventions. His life, and all of our family members’ lives would have been drastically different today.
My advice to all parents and individuals is: GET THE DIAGNOSIS!! The registry and the cockamamie nonsense around vaccines coming out of Washington is being shut down in a world that now communicates globally 24×7. Worse case, move to a state (like Colorado) that has codified supports in place. Or leave the country if you must, to find a safe place for your child or yourself to be recognized as early as possible for exactly who they are. The shame of being hidden away and misunderstood will do untold damage, and may even kill them.
