Last updated on November 26, 2023
As April approaches (today is March 30, 2021), autistic self-advocates begin our annual critiques of Autism Awareness, Autism Speaks, ABA (Applied Behavior Analysis), special education, healthcare, mental health’s DSM (Diagnostic and Statistical Manual), accommodations, tolerance, a long list of social injustices… and our families.
At least as I skim blogs and social media, I notice a generational difference. Younger autistics, those under 35, express themselves with more anger, more bitterness, and “more passion” for Neurodiversity (as one informed me).
Ah, those kids today, telling us older folks we just don’t see how unjust life is. In the words of John Hughes, “Life itself is a stupid tradition.” Those 80s movies had the coolest angst.
I’m right there with other autistics in disliking Autism Speaks, an organization that seems too close to a money laundry. I’m painfully aware of the dark and disgusting histories of Ivar Lovaas, the “creator” of ABA and Hans Aspergers, who was at best a quiet cog in the Nazi death machine. And the DSM has always been a flawed model of mental health, as Roy Richard Grinker has documented.
But, pause and consider circumstances and the full contexts before criticizing your families or any other families with autistic members.
I was born in 1968. That might as well be the “dark ages” in healthcare, thanks to the progress we’ve made within neurology and other fields.
As I have written and stated during presentations, it was a complex arrival with a lot of problems. In 2014, I wrote that I am fairly confident, as are my doctors, that my birth was the primary contributor to my autistic traits. Not the only factor, but the primary factor.
My parents did the best they could with what they knew and what resources they had.
Nothing could prepare parents for an expectedly disabled child. My mother did everything anyone could expect of a young parent in 1968. My father was of his generation, a different time. He worked to provide so my mother could stay at home, manage doctor appointments, and generally manage the household.
No, my parents were not perfect. But, I never doubted that they tried to best of their abilities.
I try to be a better parent than my father was. He tried to be a better father than this was. Susan and I both try, every day, to be better parents than the last generation, and our parents tried to be better than their parents. It’s called progress.
Stop comparing what parents did in the 1960s, 70s, or even the 80s to what we now know and understand about Neurodiversity, including autism and ADHD. Even our sadly lacking mental health expertise is lightyears ahead of where it was 30, 40, or 50 years ago.
I’m not sure many 20-year-olds are ready to be parents. You’re starting a life together and you’re trying to establish careers.
Susan and I waited to start a family; some would argue we waited too long. We still fall short, as we try to do better.
My parents have flaws, too. Unfortunately, I have internalized many of them and am too much like my father at times. At least I know that and can try to change.
Susan tells me when I’m too much like my father. I am trying to learn not to be what I didn’t like as a child. It’s not easy.
I also recognize that my father had experiences I cannot and will not understand. His birth father abandoned the family. He didn’t have the same surname as his siblings, which could not have been easy in the 1950s and 60s. His family was never financially secure, as best as I can tell. His mother and the man I consider my grandfather were shaped by the Great Depression. They canned food and saved everything.
No, I don’t relate to my father. I’m over 50 and still haunted by his mercurial moods, frustrations, and often bitter disappointment. I always wondered if my needs, my healthcare and challenges, are why he was unable to focus and become a registered nurse with a four-year degree. It always felt like he wanted, desperately, to be more than a licensed “vocational” nurse.
But, my mother and father never said they resented me. They did what they could, despite the challenges. Despite their own complicated backgrounds, they managed to get me through my childhood and teen years.
Context gives events, choices, and attitudes meaning.
Personally, I know that my autistic traits make it difficult to “put myself in his shoes” when I consider my father. I know next to nothing about my mother’s childhood, but I doubt it was a storybook situation. Lower-middle-class or lower-class life in the 1950s and 60s wasn’t the stuff of movies and early sitcoms.
It is absurd to hold my parents to a standard that didn’t even exist in 1968 or through the 1970s. I do not hold them to today’s standards and no one else should do that, either.
I’m sure our children will be disappointed in many choices my wife and I have made. They might recall the negative aspects of our personalities, too. We have our baggage, no doubt, and it is revealed whenever we’re tired and frustrated.
Autistics, all disabled adults, give your families the same understanding you seek.
For years, I have told audiences that my parents did their best. Was it perfect? No. Was it always great or even good? No. But they did the best they could with a disabled child. And then, they did the best they could with a “twice-exceptional” (disabled and gifted) student in public school.
My wife and I have two children who are Neurodiverse and have complicated backstories. It’s not easy being a parent. It’s the hardest thing we’ve ever done, and we’re two highly educated, financially secure people. We have advantages neither of our families had.
I am not suggesting you forget or ignore past abuse, but abuse is different from not knowing about or understanding disabilities.
My parents were not Ivar Lovaas or Hans Asperger. My parents were well-intentioned young people from complicated families and with few resources.
Sadly, I do know that some parents abuse their disabled children. They resent and even hate the child for being a burden. Statistics prove how monstrous mothers and fathers can be, with filicide a leading cause of death among autistics and other disabled children.
If that was your experience, I am sorry. The abused do need to speak out.
But, overall, I know my parents supported me and wanted the best for me. They did without some things to provide opportunities to my sister and me. They made sure we had better lives than they had. Susan and I are making sure our daughters also have better lives.
I’m merely advising autistics to carefully look back and ask if they are being fair to the previous generations.
My parents learned as they grew older. They are good grandparents. They are the best people they have been, and I believe that most people try to improve themselves with age.
I encourage the community to focus our energies against Autism Speaks, ABA, ableist educators, unsupportive employers, and a society that keeps trying to change us instead of cooperating with us.
The joys of Autism Awareness Month.