What I am Learning from My Autistic Son

I am writing this blog as a mother of two who worked full time in a purposeful career but experienced burn out. I have had the privilege of working part time as a consultant since I left my job. I have spent hours trying to work out why I failed and to see my life change as a positive growth opportunity. The road is still rocky but I want to share what I have learned with others. I am hoping to find a way to prevent burn out in other working moms so that they can remain leaders in the workplace. When women work, workplaces are more diverse and society benefits in multiple ways.

In addition to the stress of working and trying to be a super mom, I was challenged by my son’s unhappiness at school and his eventual autism diagnosis. I know there will be many working mothers who will struggle to help, accept, and learn from their more challenging children. I share my experience so far to simply say, you are not alone. With the caveat too, that I had the means to get help.

Getting the diagnosis

There is some history of attention deficit disorders (ADD) in my husband’s family, so it was on our radar. When my son was in 2nd grade in our local public school, his teacher raised concerns about his attention and social skills so he had a few meetings with the school counselor. By 3rd grade he reported being unhappy at school and being bullied. When I checked with his teacher, who was a temporary substitute due to maternity leave, she assured me everyone was very kind to my son. I wondered if he was being sensitive but started to think that a private school might provide him more educational opportunities in creative areas that he enjoyed that would also boost his self esteem. He had to complete an entrance test for the private school, but he spent the whole time looking out the window at the courtyard where all the pupils were going about their exciting day. The administrator said he was ‘clearly not motivated’. I was devasted that I had unwittingly put him in this situation to fail, and that someone could be so judgmental and dismissive.

I took him to my university to get him tested for ADD, expecting the examiner to say he was just a normal, distractible 8-year-old boy and I was an over anxious mother. His test results indicated he had severe ADD (non hyperactive). In fact, he found it so hard to concentrate during one of the tests that he was in tears and I had to sit with him for him to complete the test to get a score, needed for the diagnosis. It was so painful to see. Nothing I had seen at home had shown me this level of struggle. The tests showed that some of his abilities were off the charts and some were very below average. We were able to get a 504 plan for him, but not an IEP, as he did not have a clear deficit in one particular area.

At the end of 4th grade, his only school friend started on medication for his ADD and improved greatly, but my son felt left behind. His struggles to fit in left him with low self-esteem and depressive symptoms. His teacher said he would struggle in middle school. What did that mean? What should I be doing? By 5th grade we decided to let him try medications, but he had no improvement in his attention and instead suffered gastric side effects. We tried a therapist who seemed to be mocking his behavior, between staring at her hair. We tried neuro-feedback but when one session on inhibition resulted in him wetting the bed we stopped. I think one of the reasons that the interventions did not help him was that his perception of the negative environment at school was so strong that his behavior was framed every time he stepped across the threshold: “I do not belong here” and his brain shut down.

The neurologist who treated him asked me to complete lots of surveys and observed him. She diagnosed him with Asperger’s, which is on the autism spectrum and sometimes accompanies ADD. She excitedly described the wonders of a neurodiverse brain. It was such a relief to receive a diagnosis that seemed to make sense and to have someone talk so positively about it. She described his brain like a computer which had several video files open at once, affecting its processing speed. This was a helpful analogy.

Not only did his additional diagnosis help us get an IEP which his 5th grade teacher was adamant he needed for middle school, it also meant we could accept his many quirks as part of his condition. I no longer battled with him to wear shorts and a t-shirt in 100-degree weather, he needed the comfort of long pants and long sleeves. I was not surprised that he could not bear to touch cotton wool, although this was unfathomable to his sister. I realized that his food sensitivities were real and not simply being a fussy eater. We put him into theatre programs and music classes instead of sports where he could learn to express himself in his own way. He writes long lists of single words, that make little sense to me, but as was explained to me, he is getting what is in his brain on paper. A good thing. A cross over skill from his list writing is that he is very responsive to ‘to-do’ lists, for example chores or schoolwork.

Getting support

Through a private organization, focused on children with behavioral issues, overtime we worked with an executive functioning coach, a parent coach, and a family therapist. Not only, did my son enjoy the sessions in our house, learning to focus, learning to recognize emotions, but he enjoyed the special attention. The parent coach taught us to notice wins each month, and to communicate on his terms. I would first check I had his attention, I would ask one thing at a time, I would write it down, I would ask him to repeat it back. They taught me to catch myself, whenever I thought my son was being difficult or ridiculous. I stopped and said, no he is making total sense in his mind, it is just totally different to my mind. He is very literal. I became a more patient communicator, changing words so he could understand. Some typical but funny examples include:

Please shut the mini-van door, blank face, repeat, raise voice, ask do you hear, ask are you ignoring me, finally ask do you understand me, no: a minivan door doesn’t ‘shut’ it ‘slides’ (hard to understand the problem and to communicate the difference, when you are panicking and want the bloody door shut to stop the dog running into traffic);

if a green machine juice is put in the fridge, where the dog food normally is, the dogs get green machine for dinner; no harm intended

what did you write about today? I didn’t write about today… What did you write about?

When I left my job in academia, I was able to spend more time looking for educational alternatives. We found a K-8 local charter school that focused on social emotional learning and project-based learning, offering art, nature studies, robotics and theatre. He went into 4th grade rather than 5th which was more appropriate for his age and maturity. The school was very neuro-diverse, and my son felt very comfortable and gained confidence particularly through mastery of art and music which then transferred to confidence in math and writing. He meets with the school counselor regularly, who is also a trained family therapist. He still struggles with low self esteem. It made me realize how charter schools are so key to helping kids who do not fit into the normal educational system.

Understanding our differences

I have tried to imagine what it is like every day to know that the daily things others find easy, for example communicating and responding to others’ emotions, are extremely challenging for him. He is high functioning so aware that others do not struggle in this way. What we take for granted is a painful process for him; trying to be understood. It must be exhausting. He has a need to control as much as he can, as so much feels out of his control. I can understand why he prefers the fantasy world he inhabits in his own head. Interestingly, my son has felt comfortable during COVID-19 schooling from home. He has not had to struggle with the classroom distractions. He has not had to struggle with social norms. In fact, I believe the video communication has given him more confidence. He can be himself and not be teased for it the rest of the day in class. He has his to-do list and loves controlling his schedule. He is writing long stories, putting his fantasies on paper. We are so lucky.

There are so many fascinating by-products of his unique brain. He can narrate a whole movie by listening only to the musical score. He spots details in pictures that are hilarious that no one else would see. His drawings are intricate. He’s a confident performer, with a great memory for lines. I read about a business man with autism who used acting techniques at work to help him behave appropriately for the situation: maybe the rehearsing and predetermined format of a play is comforting for him.

ADD and Asperger’s are on the milder end of the autism spectrum, so we do not face challenges that many others do, for example no verbal communication. Nonetheless my perfectionist Mom persona really struggled with this messy reality that my child did not fit into some constrained vision I had for discipline and learning. My son was not trying to be rebellious. He was just trying to process the world around him and he did not fit into the same educational box that had contained me as child. It also made me realize that box that I had accepted through fear, punishment, conformity and people pleasing was not a box I wanted for either of my children. How many times do we think our kids are trying to piss us off and instead they just see the world differently? I have learned to put understanding my son as my goal, instead of controlling his behaviors. Through this journey I have learned as much about myself as I have my son. And our struggles with control, communication, and self-esteem are something we have in common.

I recently started using the Calm app to meditate and have been practicing this with my husband. Still trying to find relief from my ever-present inner critique. After each meditation I ask my husband about his experience. What did he visualize? How did he see his thoughts? It’s so fascinating that his experience is entirely different to mine. I shouldn’t be surprised after all. I understand that empathy is stepping into someone else’s shoes and seeing the world from their point of view. But given how we each see the world so differently, instead of assuming that we can imagine life from their perspective, maybe we actually need to ask, “How do you see the world?”.