There is no doubt in my mind that my father was on the spectrum. He had a mistrust of psychiatry and never got diagnosed, but it was plain to me that dad was the same type of person I was, and that we could be different together. He was intellectually gifted, brutally honest, and had a generous spirit which made people appreciate his oddities in conjunction with this kindness and magnanimous quality he radiated. But he often found himself frustrated, because he could not always properly articulate the way his mind worked in a way others could understand, so he could be gruff and somewhat curt on a bad day. I inherited that from him, and I am trying my best to emulate his generous spirit and honesty as I get older.
I lost my father when I was 13 years old, after he died of cancer. Shortly after that, I also got my diagnosis. It all clicked in my mind after I got my diagnosis, I had inherited it from my father, and he had been autistic too. There was so much I wanted to say to him, so much I wanted to ask him, so much that I wished I could have talked about, but there was no chance of that now that he was dead.
I have thus, instead, worked on explaining autism to my mother, who is neurotypical. My mother is not a perfect person or a perfect parent, but she has tried very, very hard to understand why it is that I do what I do, and has learned that simple comments or remarks can in fact be very hurtful or taken in the wrong way when it comes to my autistic behaviours. She still misspells “Aspergers”, and can’t give a solid definition of autism when you ask her, but that’s superficial when you consider that she knows how to interact with autistic people with respect and human decency, which is far more valuable.
With that in mind, I fancied spending tonight sketching out a bit of a map for allistic parents who have teen-to-adult children on the spectrum, on what it means to interact with autistic offspring, and how to build a healthy and mutually respectful relationship. My advice is not meant to be a step-by-step guide, there are always variations and fluxes which contribute to each situation’s uniqueness, but one may consider this a point in the right direction. I hope that people will read it with an open mind and heart.
The best advice I can give for parents who are allistic and have autistic children is to understand that there are millions of ways to communicate outside of words. A lot of classes and courses seem to stress teaching nonverbal signals to autistic people, but I think allistic people could use a refresher course as well. Your child* could communicate with curt, terse replies or silence to your questions as a mean of wanting to be left alone. They could also communicate by crying in frustration, screaming, or practising behaviours like picking, plucking, scratching, or rubbing. Don’t take these personally when these behaviours are going on, or become intent on getting a word out of them. If they want to be left alone, then it’s as much up to you to get a clue as it is to them to indicate to you that they do. And speaking of being left alone…
Autonomy and independence are crucial in the life of an autistic person. Making mistakes is a scary thing, but it’s part of the process of becoming one’s own person. If you are there constantly looking over their shoulders, how will they learn? Learning how to trust your disabled child to make the right decisions for themselves and bounce back from their mistakes is much more valuable than years spent hovering over them, waiting to clean up any messes that come their way.
Try to remember that autistic people can’t always articulate why something bothers them. Some of us may have the vocabulary to explain when something triggers our tactile/sensory overloads, but others can’t. That’s where that nonverbal communication bit I pointed out earlier comes in handy. Don’t push for an explanation as to why something triggers a sensory or emotional overload, it’s not good to be nosy in that case. It’s like my grade 6 teacher always said to me, “Don’t be sorry, just don’t do it.” It’s better to ask “What can I do to make this stop” than barrage with a series of who/what/where/when/why/how’s.
Autistic people are above all else individuals, and there’s no knowing what will suit someone but annoy another. One autistic’s poison is another’s joie de vivre, and just because you read something in a book, blog post (ahem), magazine article, or something else about autism doesn’t mean it will always work for them. Don’t get angry at yourself or your child if the tricks and tips don’t work out for you, just say “Well, what can I do for them as an individual that may work for them?” After all, the ultimate goal of neurodiversity is to respect autistics as individuals, not tragedies or embarrassing secrets.
* With apologies to people who are frustrated by the constant definition of autism as being a condition of minors, but I am going to use the word “child/children” in this post to refer to autistic people, not out of a desire to infantalize, but because it’s the best gender neutral term for one’s offspring besides “offspring” itself, which sounds fairly creepy in my opinion.