This Autism Journey

I have been trying to educate myself more about Autism, how it presents, and how Autistic people perceive the world. Through this education I have found that I know nothing. I thought I knew a lot but I don’t. I rested on my laurels of being a parent to 2 Autistic kids as being the end all be all of everything there is to know about Autism. I was wrong. I know nothing. I mean, sure I know some things but the world of Autism is so vast that the knowledge I do have is just a tiny spec of all there is to know.

Some Background

Going from ignorance to education takes time. It took me a long time to seek out this knowledge. You may be wondering why it took so long and how come now? Well, it first took me a long time because my oldest wasn’t diagnosed as being Autistic until he was 15 years old. In fact, he was seen by many, and I do mean many, doctors and psychiatrists, and not a single one thought he was Autistic. They told me to focus on his intellectual disability and help him with that. Because I didn’t know he was Autistic, although looking back it was so freaking obvious, I never felt the need to learn.

Then came child number 2. He presented as typically developed and then over the years started falling behind. It was August 2020 when he was diagnosed and at that point, we were amid a lockdown due to Covid restrictions, my mom had just died, and his behaviors were so bad that all I could focus on was trying to get him to stop banging his head against the wall. Basically, I was overwhelmed, grieving for my mom and too exhausted to seek new information. On top of that I was dealing emotionally with the additional grief of having another child with special needs. (I will touch on grief in another post), I just wasn’t in the frame of mind.

Getting Educated

After many months of bare knuckle parenting I finally reached out. I hired a parenting coach to help me. She was the first person to suggest that my son was speaking in echolalia. I had never heard of that so I can definitely say that is where my education began. Then I started reading books. I love books. “The Way I See It” by Temple Grandin was of particular significance to me. Perhaps it was because it was the first book that I read on the subject or because it was written by an Autistic person but either way it had the most impact on me.

Then I started signing up and attending seminars. Can I just take a little detour and give a shout-out to all the Autism Webinar creators who make their seminars free and accessible with replays? Thank you so much for doing this. These seminars were informative but also gave me a sense of the universal core difficulties that each parent of an autistic child has to work through. It was nice to realize I wasn’t alone with these struggles.

However, sometimes those seminars require some sifting through to see what applies to my situation and if it doesn’t apply, no harm no foul, at least I learned something.

I still know nothing

Even after all my reading, seminar attending, talking to other parents, signing up for local Autism advocacy groups, and endless scrolling through Instagram accounts featuring Autistic people or other parents, I still have a nagging sense that I know nothing at all. Is Autism this vast landscape that you can never really know it all? There is always a new therapy, a new educational component, or way to speak that is being presented. It’s constant and ever changing which leaves me feeling that I will never know it all. The more I learn the more I realize the less I know but that’s ok because learning is supposed to be lifelong. We don’t stop learning. As we grow older we may stop seeking out new ways to learn but the capacity to learn new information should be a lifelong process. I do know that not educating myself on the subject is not the road I want to be on. I would rather sit with the feeling of the more I learn the less I know than the feeling of knowing nothing and thinking I know everything.

Take care.

Some links:

The Way I See It by Temple Grandin https://www.fhautism.com/shop/the-way-i-see-it-a-personal-look-at-autism/

Alana Robinson, Parenting Coach – https://www.allanarobinson.com/