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
The next few years, I had to constantly discipline and chastise my daughter for not cleaning up after herself, daydreaming, losing homework assignments, gloves, hats and coats. I was on the verge of a nervous breakdown. By the fourth grade, my daughter could not button her shirt, zip her coat or tie her shoes without great effort. She didn’t have one friend her own age. The girls at school called her weird and stupid. Her only friends were between the age ranges of 50 and 75 years old. I felt mean and guilty because I would secretly wonder, what is wrong with you? Which made no sense because I already knew.
I knew it was time to accept reality and stop avoiding the issue. I finally accepted that something was wrong with my daughter and I knew the name very well. I made the decision to have her evaluated. The diagnosis was no surprise. My daughter had Asperger’s Syndrome.
By the time we got the diagnosis, things were bad at school and at home. My daughter was suffering and my heart was broken in a million pieces. As a parent, I was dealing with feelings of guilt and hopelessness. For years, I kept saying, it’s nothing; she will grow out of it. It took her little longer to walk, talk and do the other things kids did, but she will catch up. Her inability to do basic tasks were a result of gross motor deficits commonly seen in children with Asperger’s.
Acceptance
Deliverance would not come until I accepted the fact that I was not the reason she had Asperger’s, but I was personally responsible for making sure she got the help she not only needed, but deserved. It was not enough to say “behave yourself”, “be like other kids” and “focus”. I had to get over my own crap and help guide her. But, before I could do that, I had to accept that my daughter–the 9 year old published author who had written a business plan for her own company, could do advanced math in her head and had an encyclopedic knowledge of all things Michael Jackson had Asperger’s Syndrome.
I will always remember what she said to me the day I found the courage to explain to her she had Asperger’s Syndrome. I sat her down and told her about the disorder and how it wasn’t something she should use as an excuse not to do her best. It’s something she should be mindful of so that she can manage it appropriately. She quickly interrupted me and said, “Mom, I may have Asperger’s, but that doesn’t mean it has me.” My child is so wise.
I’d like to tell you that when she began treatment, things were immediately resolved. They weren’t. On the contrary. We had years of pain to work through. Things became even more difficult before they got better. Our relationship had suffered as a result of my years of poor coping and the toll from the constant bullying and isolation at school. I still harbored a lot of guilt over trying to force her to be normal because I thought that would be the easier path. At age 11, she spiraled into depression, became defiant and refused to listen to anything I had to say. Defiance is typical pre-teen behavior, but it’s even worse when your child has Asperger’s. I told her I erred in judgment and asked her to forgive me for what transpired when she was younger. After joint therapy and working through our issues, I believe she has.
I now research everything I can find on the disorder and share it with her. I’ve been diligent about ensuring she is getting the necessary treatment and no longer allow fear or shame to control my decisions. I embrace all that makes her unique and I am thankful that she is not like everyone else. Today, she is 15 years old and she is amazing. She is a high honor roll student and has improved socialization skills, but is still close friends with baby boomers. She is in a school with a supportive staff and her organization and gross motor skills have vastly improved as a result of occupational and cognitive therapy. I can’t tell you the joy I felt the day she learned to ride a bike. We still deal with bullying and rejection issues on a constant basis and it is a struggle for her not to internalize the intolerance of others, but I see her become more confident everyday. Most importantly, these days she smiles more than she mopes.
My daughter is young, black and Aspie. She is proud of who she is and so am I.
Resources for parents
http://www.aspergersyndrome.org/
http://www.aspergersmn.org/
http://www.amazon.com/Aspergers-Books-that-are-Godsends/lm/1J989FL0YRM3P
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