Our Autism Diagnosis
When my oldest was about three months old it became clear that there was not a parenting book out there that could help me. She did not meet her milestones. Well she did, just months, sometimes years, after they were supposed to come. We went from doctor to doctor. Seventeen years ago, autism and early intervention were not the buzz words that they are now. Because of the severe gross motor delays my daughter experienced, every doctor we met ordered x-rays and blood work and testing and testing and more testing. Some thought it was cerebral palsy, some a genetic disorder. No one really knew where to put us. In the meantime we spent two days a week at occupational, physical and speech therapy (by today’s standards not nearly enough) and I waited for a diagnosis with a constant tug in my mind that they were all missing something. At three years old she could say cheese and hot dog, she liked people but only adults, she hated the grass and the sand and tags in her clothes and getting her hair brushed and bright light and noise, but no one said autism. She started a special education preschool 5 days a week and she thrived. There were kids in the class with classic autism and I did not see my daughter in them so I thought that must not be it. Not knowing, at the time, that autism comes in as many shapes and forms as there are kids with the diagnosis. We plugged along with no “label” just piles of discouraging testing from the school countered by amazing gains the longer she was in a classroom setting. Eventually I learned of a nationally recognized autism expert who just happened to have an office close to us. I drove there thinking I already know what he is going to say, I just need him to say it. He did not evaluate her the way the million doctors of the past three years had. He brought in a dollhouse and wanted to watch her play. She filled the dollhouse, with puzzles and books from the corner of the room. Then she took them all out and proceeded to put them all back in again. He looked at me as if there was never any question. I will always remember that ride home. I felt an odd sense of relief that we finally had a diagnosis and could move forward, but was also scared out of my mind. Getting an autism diagnosis is like staring into a black hole. No one can tell you what your child’s future will hold. At 17, she has far surpassed any future I had imagined for her. If there had been a push for ABA in those days would she be better at certain tasks? If she had more speech therapy would she pronounce every word correctly? If our OT emphasized oral-motor activities would she be able to tolerate certain textures? I don’t know and honestly? I don’t care. If you take anything away from reading our story I hope it is this: You have to make peace with your path. At some point, along your journey of diagnosis and treatment and school district debates, you have to decide that you are doing the best you can for your child and you have to move forward without looking back. You have to concentrate on today and the only thing you need to remember about yesterday is just how far you have come. How was your child diagnosed? Did you know before the doctors told you? I would love to hear your story. If you have written about your diagnosis on a blog or other outlet, leave a link to it in the comments and we will feature you on our Facebook page in the weeks to come.