My daughter was always… um… what is that word I read once… “strong-willed.” Difficult, high-maintenance, and artistic are all terms that have been used to describe my child. Everyone who knew her loved her. Family, friends, teachers all loved her. Her vast early vocabulary made her an adult favorite. She could have an argument that could rival a well trained lawyer at 2 years old. She enjoyed singing and playing the piano very early. She became obsessed with play doh as soon as she got her hands on it and could make some amazing things with it. We knew that lining up her toys in a specific way was a little odd but I read that it was fairly common for kids her age. I also just assumed that not playing with dolls was just a part of her personality. We thought that when she was reciting every word to a Disney Collector Egg Surprise YouTube video that she was just watching it too much. Or that when she was reciting every word to a conversation she witnessed between her teacher and another student getting in trouble was just her trying to be like a teacher. Every kid wants to be more like their teacher, right?
It was several months after she started Pre-K when she started saying that the other kids don’t play with her. We spoke to her teacher about it and her teacher said that she’s just different than the other kids and likes to do her own thing. We just went with that and moved on from it. Then I was watching an episode of Parenthood and broke down. Max, a character in the show, is a child diagnosed with Asperger’s. Asperger’s is a term that is now moved under the Autism Spectrum Disorder umbrella. My child wasn’t just like Max but she had much more similarities to Max than she did any kid at her school. I just decided that I was freaking out, she’s fine, and I stopped watching Parenthood (great show by the way).
Fast forward to a cross country move at 4 years old, not being old enough for Kindergarten in the different state, and disrupting everything she had ever known. We started her in a Pre-K program and quickly realized it wasn’t going to work for her. The teacher was inconsistent and would say “We’re going to paint today” and then wouldn’t paint. My daughter didn’t handle that well at all. She went four days a week for 2.5 hours. Three out of the four days I would pick her up and she would start crying in the car. We decided to pull her out whenever she back talked to the teacher, something she had never done to another adult before. She wasn’t coping with change well and having meltdowns more frequently; we were beginning to accept that something was wrong.
I kept her at home to try and figure out what was going on. After talking to the pediatrician and 2 social workers, I finally found a professional covered by our insurance that could help us. We met with a clinical psychologist who asked me to go through everything from as far back as I could remember. I had wrote down every concern from the moment she was born until now. I reminded him that she was my first child and many of the concerns I had could very well be normal. He listened as reality set in with every single thing I listed including but not limited to: not sleeping more than a four hour stretch until she was 2, being argumentative, having severe meltdowns where she is screaming for 20 minutes straight over nothing, inability to share appropriately for her age, playing next to kids but not with kids, repetitive, imaginary friends, low self-esteem, biting nails until they bleed, intense sense of smell and hearing, dictates conversations, and very literal. After I went on and on for almost the entire session he finally said “Did we talk about the possibility of Autism when we spoke on the phone previously?” And I knew. My first instinct when I watched Parenthood was right. He diagnosed her with Autism Spectrum Disorder but said that Asperger’s is the appropriate term for her.
What happened after this changed my view of people and society in general.
The reaction from my husband’s family and mine was horrifying. We were basically told that her being autistic is ridiculous, we were hypochondriacs who were obsessed with doctors, all psychologists are quacks, there is no such thing as autism, and she just needed to have her ass beat then she would act right. These things were said by people we cared about. People who were supposed to be there for us in this difficult time and not blaming this on our parenting skills.
My husband and I were both the youngest in our families. We both have older parents and two older siblings. We were born into a different type of world than that of our parents and siblings. We exited college into a recession that made it impossible to follow the traditional route of employment that our families experienced. We were friends with people of all colors, religions, backgrounds, and sexual orientations unlike the rest of our families had.We were the first parents in our families that didn’t spank our children. We did this against how we were each raised and based on every bit of research we could get our hands on regarding the matter. The research showed us that spanking was making behaviors worse, not better. I was also the first to breastfeed. Another thing that caught intense backlash from both sides of our families. They were from the generation that was told formula was better, and again, research denounced that and I wanted what was best for my child.
In a search for the reasoning behind their horrific reactions, we have tried to find the source of their misunderstanding. What we believe (or have chosen to believe) is that there is a mass misunderstanding of the term ‘autism’. When people hear the term ‘autism’ they expect to see a child in the corner rocking back and forth, walking strangely, and having a low IQ. This image that people have in their head that was planted there by God only knows what has greatly hindered the public’s image of people on the autism spectrum. Yes, there are kids who are severe, non-verbal, and have low IQ’s. But, there are also kids who have abnormally high IQ’s, extensive vocabularies, but have trouble in many areas of their daily lives.
My daughter has an above average IQ, is greatly obsessed with play doh and any type of sensory goo that she can play with, and is the same person she was before the term ‘autism’ was applied to her medical chart. I am not ashamed of that label. I don’t tell everyone I see about it. Only those close to me and my child and any professionals that need to know. I’m getting her the help she needs to be able to navigate in this world appropriately. I’m giving her the tools she needs to learn how to make friends because it doesn’t come naturally to her. Her doctor was able to find the right medication for her so she wasn’t screaming like she was being tortured for over an hour every day during her sensory meltdowns. After hour months of treatment she does not have meltdowns anymore thanks to the appropriate medication, she can share now thanks to her amazing Occupational Therapist, she interacts with kids much better and is living a much happier life now that her differences are being addressed.
We had one family member step up, my mother. She flew to see us and spend time with my daughter and son (also newly diagnosed with Cerebral Palsy). Before she left she told me that I was right to seek help. She couldn’t believe it at first, but now she does. She made an effort and is being very supportive. She FaceTimes with the kids every weekday and stays up-to-date on their therapies and improvements. Both of my siblings have stopped talking to me. When I try to help them understand they refuse to listen. They don’t believe the research and advancements that have taken place in the mental health field. They no longer have any interest in my children whatsoever. I’ve decided that it’s okay. I don’t want people like that in my children’s life. It’s disappointing nonetheless.
I know that there are more people out there like the family members who have been against my daughter’s diagnosis. People who make fun of children and adults with disabilities. The bullies.The ignorant. Their culture is not an excuse, but improving the culture we live in could help another child in the future. Educate yourself. Have empathy and hold your tongue when you don’t know what you’re talking about. You don’t know that when you told that mom “You need to spank her for acting like that” that she spent an hour sitting on the floor holding her child while she was screaming and hitting herself during a meltdown. Spanking does not fix autism. You don’t know that when you told that mom “You just need to put her in school and go back to work” that the mom sacrificed her career for her children and mourns that career everyday but knows that if she would have went back to work her child would have probably been institutionalized by now. You don’t know the guilt you make the working mom feel when you tell her “You are going to have to stay home with your kid because nobody else can handle her.” That mom is working to financially provide the care that her child needs.
“God blesses those who are persecuted for doing right, for the Kingdom of Heaven is theirs.” Matthew 5:10