The sensory overload that is life got me thinking about the many “explainer” posts I've seen on social media. (You can find me on Instagram) Being an autistic person who is a part of GenX, I've got a perhaps a unique perspective on the autistic experience that I'd like to share. Hopefully, it helps spark some discussion in your circles.
I'm over 50 now, and I was autistic before there were specific diagnoses for the brain wiring differences that now place me on the autism spectrum. There wasn't any awareness of sensory issues, we were labeled as "sensitive." Social anxiety was "shyness." Aspergers? We were "weird." I can look back at the many catastrophic / epic fails in my early social life and point to a specific reason why it happened the way it happened, based on being non-verbal and how that is expressed in my brain's unique wiring. I'm not writing today to re-write my past. I'm writing today about the things that I've wandered into that have helped me in life. Maybe, they'll help you too.
I say “wandered into” because many of these adventures were done not by any intentionality on my part, but largely because a friend or family member helped bring me into the experience and paved the way for my eventual success. I stumbled into them. I certainly wasn't ready for any of them. Left on my own, I probably would have declined to participate. But, through love I was shown a path forward. Then, I found a way to make it my own and to benefit me.
First, a note to parents who are not autistic but have autistic kids. We hear everything you say to us and about us. We hear it. We understand it. More importantly, we feel it. We don't forget it. We are our own normal, not your normal. Parents have unique responsibilities towards their children, and that includes you (more on that later).
Yes, we hear and understand so much. This can be overwhelming as we grow into our brains and sort out how to use this amazing quantum field generator to our benefit. Like everyone, we have strengths and weaknesses. We're human, after all.
Yes, we're human. Not super human. Not super heroes. Just human, like everyone else.
So here we go, in no particular order.
#1 - If you were born after 1920, everything you know about parenting, family finances, wealth, and health is likely wrong. Everything you've likely been taught has been heavily influenced by some industry or another (see "why do we need a big breakfast" in the morning for more information on this?).
The 1920's and 1930's are quite significant to this discussion as this was when the link was broken - an important factor that has to be restored in your family's life if you're going to improve the outcomes for your autistic child. In this period, the US government confiscated familial wealth (source) and replaced multi-generational wealth building with government run personal retirement plans.
Think about that for a second.
Can you leave your Social Security benefits to your autistic child in your will? Of course not. If you build a successful business and accumulate substantial wealth, what happens when you die? The government may tax your estate and take a large portion away from your heirs. How does this help your family? It doesn't. Some have financial planners and living wills / trusts / estates. Many don't. Everyone should have a legacy plan. Your family's legacy plan should include everyone in the family, in both plan and execution.
Thus, in a "first things first" kind of plan, any discussion about "what are we going to do with our autistic child" must include a return to multi-generational wealth building and maintenance strategies. Our jobs as parents is to leave our children in a better position than where we started. We can do this with a legacy plan. But we can't do this accidentally, we have to plan for it. I had some great advice and acted upon it - and it's benefited my family tremendously.
#2 - Surround yourself and your family with people of like minds. Can a person who believes in the confiscation of your wealth be a true friend? Can a person who believes that an autistic person needs to be cured/fixed be a true friend? If you politely tolerate words / behaviors that denigrate autistic people, how do you think autistic people will feel about being around you? Think about it. The majority of fundraising around autistic people involves organizations who strive for a world where people like me don't exist. In my research, I'm always working towards a world that accommodates the autistic brain and helps it thrive. See the difference.
How you handle this can be painful. How you handle this will be unique to you. I'm certainly not suggesting ditching everyone - just be aware of what people think and say around you and your family. People are either supportive or they're not. That's all.
#3 - Communication. The human brain is able to communicate in a variety of ways. Not all of us are verbal. Some may become more able to work in the verbal space as they age and grow into their brains, like me. Some need accommodations to aid in communication. But for us non-verbal autistics, the primary / home language (one’s L1 in academic speak) will always be a foreign language.
For me, I could hoover up vocal communication that was happening around me (people talking, movies, TV, etc.) and parrot it back (echolalia). Sometimes this worked. Many times it didn't. They weren't "my words." There were a best guess at a proper response using words borrowed from others. I've had some epic fails along the way. Until I had my own words, I borrowed others' in order to "pass" for "normal." I suspect others have taken this approach.
Something that helped me tremendously, I found later in life thanks to a distant cousin. He joined the Freemasons and encouraged me to join. I did. It was amazing. Here's why.
#4 - Freemasonry. Freemasonry's ritual had words that are repeated in the same order since time was time. The movement around the lodge room was ordered and orderly. I could easily understand the rules and absorb the ritual language. “Brotherly love” meant that when I made mistakes in repeating the ritual, I was corrected from the standpoint of love and positive growth. Along the way, the lessons helped me to understand how a boy becomes a man, what are the proper duties of manhood, and to prepare me for my eventual death - but that my obligations will live on after that and what to do about it (see #1).
Consider that for a second. How are parents of autistic boys preparing them for adulthood and manhood. Staying completely away from discussions of gender and politics, the lessons are appropriate for anyone who wants to head a household and build a lasting legacy. (BTW, Freemasonry has groups for men, women, and children - likely in your town or close by).
I dove deep into the world of Freemasonry. Being a read/write learner, but also relying upon illustration, the Masonic Tressle Board made perfect sense to me. As little as 200 years ago, literacy was rare among the working classes. Architects needed a way to communicate designs and work plans. This graphical language was used to communicate very complex concepts accurately and effectively. Again, I was quick to get the significance for my own learning.
I was slow to progress through the degrees. Linear recitation is difficult for me, but not impossible. Were it not for the help of a very special man, and Masonic brother, who was at my side for each proficiency test, I don't know if I could have been as successful (the importance of finding the right mentor). I earned the degree of Master Mason at North Hollywood Lodge, and it was an amazing multi sensory experience that I don't think non-autistic Masons would understand in quite the same way. Thinking my mind blown, I was in for yet another surprise. I found the Scottish Rite of Freemasonry. Here, the lessons (degrees) are presented in full costume - dramatic form. Instead of just hearing/reading, I could see the actors, the sets, and actually become a part of the scene. Absolutely amazing.
The men there were/are incredible. With their love and help, I was able to perform the duties of Classroom Director. Me. In front of 20-50 men, teaching the lessons behind each of the degrees, vocally. I was able to use my brain's recall abilities, along with my newfound vocal skills to make each class a unique experience. I even wrote about the lessons of the first 14 degrees in this book. Eventually, I also lead one of the lodges as it's Master. To my amazement, I was even awarded the 33rd Degree (less than 1% of Masons are warded this degree). Me. Autistic me.
Along the way, my Masonic brothers helped accommodate my "issues." Brotherly love can do amazing things, believe me.
All of the above experiences helped me to be a better person, friend, husband, father, ... This is the promise of Freemasonry - to make good men better.
#5 - Parenting. I have a teenagers who happen to be autistic. I find myself translating for them in communicating with their mother. They have many of my "issues," as well as many of their own. After all, if you've met one autistic person, you've met one autistic person, right. This is why I say that parents of autistic children, who are not themselves autistic, should seek out autistic adults who are open to helping and becoming a friend of the family (perhaps a topic of discussion between us if you join this substack at the Founders level?). Kids, and their parents, need to see that a diagnosis isn't a death sentence and that there are plenty of adults on the spectrum who have made a good life for themselves and their families. Some have leveraged their unique wiring into amazing careers and helped shape the world around them, like me.
How can you do this? There are Meetups for autistic adults. Go to one. There are also groups of advocates out there. Go out and meet autistic people. Talk with them. Ask questions. Listen to the answers. Engage.
It's not easy being a parent. It's not easy being autistic in a world not designed for autistics. It's certainly not easy being an autistic parent of both autistic and neuro-typical kids. It's not easy - but it's possible. Did you hear that, it's possible. It's possible to be autistic and successful / happy. You just have to find your way. We autistics are here to help. You just have to ask.