What I Have Learned from My Son

When Aiden was a baby, he was born six weeks preterm and spent three weeks in the NICU. He is still very immature socially. At 5 1/2, he is a handsome, sweet, tirelessly curious boy who notices minute details in keys, cars, and architecture, and can recall them easily. He enthusiastically designs and directs family projects like car washes and time machines. Loves to play in water, is learning to swim, loves to dance, lawnmowers, helicopters, planes, dolphins, cats, dogs, and the idea of time traveling.

Autism is part of my son Aiden’s biology, as much as the shape of his nose and the color of his skin. I want the world to welcome him for the beautiful person he is. As a parent, an activist, and an ally of the autistic community, I want public acceptance of autistic people, not just autism “awareness.” I don’t want my son or any autistic person to be feared or pitied for a fundamental part of their being. I don’t want Aiden to feel ashamed of himself, or to have to hide who he is, to be included. That’s why I support the autistic community’s celebration of April as Autism Acceptance Month.

I didn’t come easily to this place of acceptance. My experiences of becoming a parent and my friendships with autistic people led me to it. So let me share with you my journey of raising my son Aiden. I’ll start way back, in the early days of my marriage.

Like every couple, my husband and I transitioned from the honeymoon stage to the reality stage, complete with arguments about toothpaste tubes and dishwasher loading. Our ideas of what should be happening, and what was actually happening, were compounded by military life. He had to go to Greenland for a year tour when we had only been married seven months. After trying to work through these difficulties on our own, I sought professional help. When he returned my husband sat on the couch with a psychiatrist who asked him, “How can I help you?” My husband replied, “It’s my wife. She’s having a really hard time. She’s upset that I have to be away for my job. She doesn’t want to do anything fun. Even when we see a movie, she ends up crying.” My husband looked at the psychiatrist holding his pen and pad. The psychiatrist replied, “Well, now we know why your wife should be here. Why are you here?”

We were both married previously. He has a daughter from his previous marriage. I didn't have any children. I had even seriously thought about adoption since I didn't conceive earlier in life after being married for five years. In 2008 my husband and I got lucky and I gave birth to a baby boy. What we didn’t know was that our baby had been struggling in utero. By the time he was born, he was very blue and whisked away to the NICU right away. He couldn’t breathe on his own. He couldn't eat and breathe at the same time for the first few days. He had a couple of rounds of jaundice. Our precious baby boy was in such bad shape that we weren’t allowed to hold him, touch him, cuddle him skin-to-skin, or any of the other lovely things that usually happen when a baby is born. Instead, I got up close and personal with a breast pump. Not how I thought I would be spending the days after my son was born, in a room trying to express milk for my son that would be stored when he would eventually be able to consume it.

By the time we left the hospital three weeks later, however, the doctors only told me that he may have learning difficulties later in life. They told me that a person from the local university would be in touch for continued early childhood screenings to make sure he is reaching milestones on time. I figured this was a good thing. I looked forward to the visits from Ms. Thea. She always told me that my son was on target developmentally. One time I noticed she thought Aiden's eye contact was odd. She said, hmmm... Does he sustain a gaze with you? I said, yes usually. It was not brought up again. Later on I noticed lack of eye contact, mainly at bedtime.

At his two month well baby visit. The neonatologist was concerned about his weight. He wasn't gaining like he should. The doctor was concerned about his brain development. I did as the doctor instructed, still lots of colic and spit up continued until his first birthday.

As Aiden passed his second birthday, I began keeping track of the ways his development differed from what I expected. He loved to play outside, but seemed more clumsy than a usual two year old. We went to the ER for a couple of his accidents. He still has a scar near his eyebrow from a doctor gluing his skin back together. He had a fit during bath time. Bath time became more and more of a struggle. He did not like to have his hair washed. I tried to hold him, but he was slippery from being in the tub getting clean and he banged his head on the soap dish in the tub while being upset with me for washing his hair. He reacted in ways I didn’t expect to noises, crowds, crying babies, and children. He seemed happy, but he was also extremely anxious. When I questioned the doctors, they stated categorically that it wasn’t autism, because he was too social and cuddly (a myth). Another professional said it wasn’t autism because Aiden responded to his name (another myth). A third thought we would have to wait to find out anything (also not true).

When Aiden was three, I put him in a home day care. At the time the lady running the daycare told me that my son should be tested for autism. She observed several behaviors that were red flags. I got a referral to a psychologist and was told that no my son does not have autism, he is very immature for his age and also displays ADHD tendencies. I was told to get a leash for my son. Be patient and come back in six months or so if still concerned. He also alluded to telling me that my parenting skills were subpar. I never went back to that specialist.

The following year he started preschool at our neighborhood school. All this time I keep thinking to myself that he has something going on... not sure if it is autism or not. I share my concerns with his teacher. She writes a letter. Again go to a doctor voicing concerns. This time went to a different pediatrician. Finally have a full evaluation done. January of 2013 I was told officially that he is being diagnosed on the spectrum. It wasn't totally shocking, but still a grieving process happened. That day I dropped Aiden off at preschool as usual and then went home and cried and cried. Cried almost as hard as the day my parents died. In a way was the day of a death of a dream. The dream that my son would not need any special services in his entire life. As the diagnosis sunk in, I thought – how can I fix this? What are the rules? I knew how to manipulate Aiden’s body to teach him how to move. How could I reach into my baby’s head and fix his brain?

I have a degree in special education. I dug out my old book from Greenspan and studied Floortime. A lot of it is usual preschool things. The aim of this therapy was not to enable me to “fix” my child, but to learn more about him: How Aiden processes sensory input and responds to the world, how he uses language, what makes him laugh, what frightens him. This philosophy laid the foundation for how I think about autism.

I thought autism was Aiden’s problem and I was going to learn the rules of fixing him. Instead, what I learned was that the problem was with me. I would need to question every assumption that society had taught me about my son. Me — I needed to challenge everything I had ever learned about autism.

We need to challenge how autism is defined — as a set of behaviors and deficits – because this description leads us inexorably to “fixing” autistic people. Autism is a way that the brain takes in, processes, and responds to information. This way of processing results in variations in the way the world is experienced and the ways that learning, communication, and movement occur. Autistic people develop skills on a different timetable or in a different order than expected.

But autism also comes with a set of strengths – a deep passion for interests, the ability to recognize visual, musical, social, or emotional patterns, and a strong individuality. When we ignore autistic strengths, we ourselves become stuck on fixing autistic people, rather than building on their natural talents.

We need to challenge how autism is portrayed in the media. Using fear, sadness, and pity to generate donations devalues autistic lives and terrorizes parents. Imagine never seeing a positive image of yourself or your child in the media. Imagine always being seen as an object of pity. The negative portrayal of autistic people and their families sends the message that their lives are joyless, worthless, and powerless. Instead of this unrelenting image of fear, we need to hear more stories of real autistic people’s lives – their joys, successes, and what helps them thrive.

We need to question the perception that disabled lives are pitiable. Our history and culture defines “normal” and anyone different is seen as less than. We are programmed to see those who are not white, male, and heterosexual, with certain physical and neurological characteristics, as not normal. This view explains why white skin is seen as the default and black skin is seen as different. It explains why women in business are told to think like men, and why any display of emotion is labeled a sign of weakness. It sends a message that anything different from “normal” is not good enough.

This is why I cried when I first learned that my son would have disabilities and be perceived as “different.” In that moment, my child’s potential was erased by my unconscious biases. Unknowingly, I had bought into the idea that anything other than a certain set of physical and neurological characteristics is a life of less than, a pitiful existence. What did that say about how I thought of as myself as a woman? What did that say about my relationships with black people? Gay people? About people with other disabilities? What did that say about my relationship to my own child? We need to challenge the belief that difference is less than. Our ideas about what is “normal” need to change.

We need to examine our response to autism. When we start with the incorrect premise that autistic people don’t understand or misbehave, we end up with behavioral programs directed at training them to act in “normal” ways. By recognizing that they already communicate and understand, we can identify the obstacles that make it difficult for them. We can move from trying to fix the person to giving them the supports they need. These supports include sensory-friendly environments, devices to assist communication, acceptance of moving around and stimming, and methods of learning that come most naturally to them. Creating supports like this are like building ramps for autistic people, instead of forcing them to climb stairs that exhaust and exclude them.

The Grand Lesson

After my child was diagnosed with autism, the grand lesson finally got through to me. Life isn’t about finding sets of rules. It’s about seeing my own child, other people’s children, and other adults behaving in ways that I didn’t expect, and then challenging my own prejudices and reactions. It’s about learning to broaden our narrow perceptions of normal, thinking carefully about what we mean when we say “different,” and how we define happiness.