Autism — A Mother’s Evolving Understanding

I remember clearly the first time someone said to me,   

 
“What about autism?”   
 
That question provoked in me burning anger, and a determination to prove there was nothing wrong with my baby. I immediately projected this feeling onto myself as a parent: I must be failing my son. In my ignorance, my first thoughts were autism=broken.

I begrudgingly made an appointment with a pediatrician, certain when we entered the office, they would be angry at us for wasting their time with such nonsense. We filled in all the checklists, brought information from care providers, and I was honest, for the first time, about the struggles my little guy was having. Until that time, I had filled my head with the notion that my baby was fine, that he would do things in his own good time, and that no one had the right to decide there was something wrong with him. I was still assuming autism meant broken. Imagine my surprise when we left that appointment with a referral for an Autism Spectrum Disorder (ASD) assessment.

That very day, I opened my mind and dug into learning everything about autism. I have always believed that knowledge is power, and I was going to read everything I could. But anyone who has been on a similar journey will understand how completely overwhelming it is just to Google autism. Where do I begin? What is credible? What do half of these acronyms even mean? So many therapy options, new things to learn, medications to consider, and the opinions! Everyone had something to say. I wanted to look for people who had been through this before. I started searching for the parents.

In the year leading up to our ASD assessment, we attended health screenings and completed endless amounts of paperwork. On the first day of our assessment, I remember feeling like we were in a movie, standing behind the one-way glass watching a therapist try to engage our son, it was surreal. At the end of the second day, we sat at a table with the assessment team. I will never forget the feeling in that room. I was excited; I thought they would tell us what we need to know to understand my baby so that I could be a better parent to him. Instead, we were greeted with sorrow. A deep sense of grief and apology from our team about this diagnosis would now “follow him for the rest of his life”. We left that day with a huge binder full of more information to digest, a diagnosis, but no answers. I was numb.

Finding my Tribe

My saving grace was found buried within the binder. Stuck between all the information, more paperwork and thousands more acronyms (it’s out of control!), was a small card for a parent support group. Yes! This is it! Surely these parents can teach us what we need to know. I called and spoke with Patricia. She had two autistic children and held meetings once a month with other parents.

Being a relatively small town, I was surprised by how many families were in this group. Our first few meetings were very overwhelming, with lots of information, emotions, and sadly a lot of acronyms! (Nnnooo!) There was an immediate connection being in the company of people having similar experiences to our own. Our group, although very diverse, had a common connection and unspoken bond. We were welcomed warmly, with no judgment, and with no expectations. This is where I learn about my son, and this thing called autism, I decided, and I threw everything into it.

My initial years with the support group taught me many things, and my role within the group evolved as well. Every month I was honoured to bear witness to the raw and honest experiences of families. Beautiful, hopeful, hard, and sometimes downright terrifying. We shared about our children, therapies, programs, and process that had now become necessary in our lives.

I was so grateful to have their support. I began to help Patricia and facilitated the group myself when her family moved. 10+ years later, I still facilitate this group, and each meeting is precious to me. I have had the privilege of being a part of countless families’ lives and made friends that have supported my family and me through some of our darkest times. They are my tribe.

My Paradigm Shift

Up to this point, my evolving understanding of autism was this; autism=broken. Wrong. My son was autistic, and I knew he was not broken.

Then, was autism scary, confusing, or something to be feared, and grieved? No.

I steered away from this narrative right away. I could not put my energy into whys or see my son as something/someone needing to be fixed. I could see him there, right in front of me, and what I wanted was to understand him and to connect with him.

Next, learning from professionals and other parents. Trying to understand, support, and connect with my son drawing from their wealth of knowledge.  
Over the years, this focus served us well. We had lots of good days and significant accomplishments. We also had lots of hard days. Being a parent, in general, is the hardest thing in the world, never knowing if what you are doing is right. Will this mess my kid up forever? Am I giving them what they need to have a great life? What am I going to do now?

So, we went on, treading water and managing. But I always had this feeling that no matter how hard I tried, my son was still on the other side of that glass. I could see him right in front of me, and I wanted to understand him, and connect with him. But I was still just observing him, unable to decode the communication he was giving me. Sometimes we got close, but it was like we were speaking to each other in two different languages, and honestly, most days, it is still like that.   
But when I met a 20-something-year-old autistic self-advocate, something changed.

A New Way of Understanding

I had spent years going to workshops, and watching YouTube videos and Ted Talks. Reading every book I could get my hands on and clinical trials about medications and new therapies. I poured so much time and energy into learning about all things autism that it became my career. I went from being the Mum needing to learn to the one teaching. Helping families at the beginning of the same journey I started all those years ago. Ok, you get it, what was the change, right? What allowed my evolution of understanding autism to reach this new height?  
 
I started to listen.  
 
Don’t get me wrong, I was always listening, but it slowly occurred to me that if I truly wanted to understand my son’s perspective, I was listening to the wrong people. I learned from professionals; doctors, teachers, therapists, and other parents. I had learned A LOT, but I was still left standing on the wrong side of that glass; until I met an autistic self-advocate. In a one-hour coffee meeting, I learned more about autism, from their perspective, than I had in the previous five years. One hour! I left that meeting feeling a bit ridiculous. How had I not thought of this before?

This new perspective helped me open the window, look in, and see what my son is trying to tell me. I can reach through, hold his hand, and connect to what he needs. I can support him because I hear him. What changed with this new perspective? Me. And I am going to say that again so you can understand how important it is. The single most important thing that needed to change was ME.

I was convinced I had found the answers I had been searching for. It didn’t solve all my problems and make me a super Mum who suddenly knew all the right things to do, but it hit me like a lightning bolt. My learning should come from people who shared my son’s experiences. From those that had the lived experiences closest to his own. Would I ask a man to help me understand the lived experience of a woman? Would I ask a police officer to teach me the skills I needed to best support a construction worker? Of course not! I had finally found the direction I needed, and I was more than ready to listen.

The Perfect Ending?

Now in a perfect world, our story ends here, Mum finds the right community, learns everything she needs, and rides off into the sunset. But this world is not perfect, and the human experience is messy. I was just as confused as to where to begin as I had been before. It was not easy to find self-advocates to learn from at the time. I started to do all I could to find those willing to teach and talk to me. I was determined to help empower and connect this autistic community that my son was part of. Over time it has emerged as a global movement of empowered self-advocates. The messages they share are many; their opinions, experiences, and knowledge are as unique and diverse as any other community. However, there is one common thread: learn from the actually autistic—nothing about us without us.

Having read through my experience, you may find yourself thinking,

“Of course, we should learn from them, who else?”

“Who’s better to lead and guide the services for an entire community than those it is meant to serve?”

Unfortunately, this is not yet the norm. We are at the very beginning, but maybe this can be your lightning bolt.

My hope in sharing my evolving understanding of autism is that you will take some time to open yourself up to hearing the common thread that rises from the autistic community. Become more familiar with them. This April, Autism BC is focusing on Amplifying Autistic Voices. We have reached out to self-advocates across BC, asking them what they would like to share. I hope you can find some time to consider how you may fit into my story. Is there somewhere in my journey that you could have helped that lightning hit sooner? Where can you help empower understanding? How can you change the narrative? This April, become a part of celebrating the autistic community.

I often share this saying with my community group and remind myself daily: Listen to Understand, Not to Respond. Focus on what another person can teach you, not on what you need to teach them.

 

“Parenthood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding your child is exactly the person they are supposed to be. And, if you are lucky, they might be the teacher who turns you into the person you’re supposed to be.” —The Water Giver