My daughter is an African-American girl with Asperger’s Syndrome. Asperger’s is most commonly diagnosed in young white boys, so to see it in an African American girl is uncommon. Her diagnosis places her in three minority categories: she is black, female and on the spectrum, which would partly explain my hesitation to embrace the diagnosis at first. I’ve always known there was something unique about my daughter. A mother knows. Even though I was aware there was something different about her, it would take years before I was fully ready to come to terms with it.
My daughter was a dream infant. Her first night home from the hospital, she did not cry and she slept the whole night through. She would eat when I ate and nap when I napped. However, as she got older I realized the characteristics that made her such a low maintenance infant were actually indicators that something more pervasive was going on with her. It would be a long journey for me, but when my daughter turned 9 years old, I took her for an evaluation and it was determined she had Asperger’s Syndrome and Attention Deficit Hyperactivity Disorder. For those who are not aware, Asperger’s Syndrome is an autism spectrum disorder which involves delays in the development of many basic skills. The most common problems are struggling to socialize with others, communicate in a typical manner and process figurative language. I am sharing my story of going from denial to deliverance in case it can help someone else with a child on the spectrum.
Denial
As a toddler, my daughter rarely laughed, did not really want to be held, kissed or hugged and preferred to play by herself. She was so serious. It took her nearly 10 months to crawl and 16 months to walk, but she was meeting all of her other developmental markers, so I didn’t dwell on it. I was a young mom and it was painful to think my baby was rejecting me, or worse, that something was wrong. I reassured myself that all babies were different and these were just personality quirks. She was otherwise healthy and normal, so there really was no cause for concern. Right? At about age three, after doing a routine child development screening on my daughter, a clinical psychologist attempted to put a label on the differences I had noticed, but had tried to ignore. The psychologist believed my daughter was exhibiting signs of Asperger’s Syndrome. Most Aspies, as they are called, are high functioning and extremely intelligent, but can come across as awkward and somewhat withdrawn. As the psychologist explained some other symptoms of Asperger’s Syndrome to me such as being fixated on one thing of interest, inability to emotionally connect with others; strange use of language; coordination issues; body language issues; isolation from one’s peer group but still extremely intelligent, I knew my daughter exhibited most of those attributes, but I was not interested in a label or diagnosis.
Rationalization
I kindly informed the doctor there was nothing wrong with my baby and I wasn’t going to let them put a label on her. I rationalized that my daughter was just introverted and shy like me and the kids who were ostracizing her were mean, cruel and ghetto. I was scared and didn’t want my daughter to be anything but normal, but Asperger’s Syndrome seemed to explain it all. I loved her so much, but I had no faith in my ability to raise an atypical child. As a teen parent, I was already in over my head. I decided that if we didn’t put a label on it, then it wouldn’t exist and we could carry on with our lives doing the best we could. She was quirky and we’d just have to find a way to embrace that without any interference from shrinks. I was wrong and we would pay a dear price for my denial. The diagnosis mattered and it wouldn’t be until six years later that I’d find the courage to face reality and get my daughter the help she needed.
Avoidance
When my daughter went to kindergarten, she was the only child in her class who could read, write in cursive and do advanced math. Although she had intellectual aptitude, she was not doing well on other fronts. She was withdrawn and disengaged from the learning, would not sit still in her seat, had trouble adjusting any time the class shifted from one assignment to the next and was exhibiting some speech and language issues. The school floated a term I had heard and rejected before as a possible reason for her difficulty–Asperger’s. I wouldn’t hear of it. I personally felt she had a defunct teacher and decided to switch schools for first grade.
Believe it or not, first grade was an exceptional year for my daughter and with good reason. She had a wonderful teacher who was patient and kind. My daughter was excelling academically and even had a good group of friends. The teacher did encourage me to get her an Individualized Learning Plan (IEP) to implement speech therapy for some of the language issues she was experiencing and I did. She also gave her additional learning support in the classroom when she needed it. I felt vindicated for holding fast to my belief that there was nothing wrong with her and with a little support and the right environment, she’d be fine.
It wouldn’t last, though. I had been lulled into a false sense of security. Things deteriorated pretty rapidly in second grade. I had to fight the school to deal with bullying, verbal abuse issues from other students, poor curriculum and inadequate learning support to no avail. Teacher after teacher expressed the same sentiment: your daughter is not focused; she loses materials; takes off her shoes and becomes highly upset at any form of constructive criticism and she is being isolated by the other children. Maybe she has Asperger’s?
There was that word again.
I couldn’t understand why the issues that seemed to disappear in first grade had all of a sudden re-emerged. I didn’t know it at the time, but her first grade teacher had experience in teaching kids on the autism spectrum. Unbeknownst to me, my daughter was able to thrive because the teacher facilitated a classroom where both atypical and typical children could flourish. When she went to second grade, she got a new teacher with no such training and she suffered.
Diagnosis
