Do you remember how you found out your child has autism? Ten years ago our journey was filled with roadblocks along the way, delaying my son’s diagnosis and therapies by over a year. Time for early intervention was lost, so I share my family’s story in the hope that it will help others to ask the right questions and seek evaluations through professionals who are experienced in doing an autism evaluation.
My son is now 13 years old. But before his second birthday, a dear friend of mine who worked in a pediatrician’s office and knew my son well expressed concern that my son had changed and was not the same child anymore. He no longer had interest in other kids and was withdrawn in general. She recommended that I seek advice from our pediatrician at his two-year well child visit.
At this visit, I expressed my concerns, but our pediatrician waived them off stating that boys are like that at this age. I remember feeling relieved at the time since I felt that he would know if there was something that I needed to be concerned about. Fast forward a year to his next well child visit and my son still had no interest in other kids, had made no progress in language over that year and was not responding to anyone calling his name.
Again our pediatrician dismissed this as something that boys go through, he said that his mother used to complain about him not responding to his name at that age as well. At the time I was juggling my newborn daughter who was born just before my son turned three years old. My mommy instincts were telling me that something was wrong but I was so overwhelmed with juggling a newborn and my son’s behaviors. A few months later we took him for a speech evaluation and they recommended starting speech therapy as well as getting an evaluation for autism and occupational therapy.
This was the first time that we heard the word “autism” as a possibility and were in shock. We didn’t know what autism was and had never met a child with autism. We scheduled our appointment for an autism evaluation but would have to wait several months for that appointment. In the mean time we started speech and occupational therapy.
It was during his occupational therapy that I was talking to his therapist about my son’s upcoming autism evaluation and she casually said “he’s definitely on the spectrum” like she was commenting about the weather. I was floored, at that point I hadn’t fully considered that he had autism, this was all new to me and I had no knowledge base of autism. I was in denial about this being a real possibility for my son.
Her words hit me hard but it did spur me to find additional support for the sense of overwhelm that I was feeling. I started looking into a support group and found Parents Helping Parents (PHP) and joined the support group near me. Through that support group I was able to learn from other parents and also learned about classes that I could take through PHP in order to advocate for our son.
I now facilitate the autism support group for PHP and I’ve written a book called Autism with HEART to help parents through the initial diagnosis and beyond. My book helps parents with newly diagnosed kids in locating resources and support, setting up an IEP binder, a system for their insurance paperwork, etc. For parents who are well beyond the initial diagnosis, there are tips on increasing your energy, preventing burnout, teaching your child life skills, removing mental and physical clutter and more.
All of us autism parents learn from each others' experiences and lessons. I hope to make a contribution to the families coming up behind me.
Katherine Kanaaneh is the author of Autism with HEART (https://amzn.com/B01M3P58TV). See her blog www.AutismMomMindset.com where she shares her autism journey, tips and inspiration.