John Steinbeck once said, “I wonder how many people I’ve looked at all my life and never seen.” How true that statement still is.
Today I want to discuss autism acceptance and how society looks at but doesn’t actually see what autism actually is. I suspect this is because everyone has heard of autism but few can actually explain what it is. This is a problem and this post is designed to help fix it. Today I share with you how I came to authentically understand the beauty of neurodiversity. I hope it will help you be an effective ally for any neurodiverse person, but especially for autistic people. Right now in Amercia, 1 in 5 autistic teens will be stopped and questioned by police before age 21 for suspicious activity. People with disabilities, including autism, are five times more likely to be jailed than those without disabilities. This is a problem that you should care about.
“But what if I don’t know anyone who is autistic?”, you may ask.
I understand that stance because I had a similar view. Today, I have a big favor to ask: read this like the person you love most in the world was recently diagnosed as autistic.
Today, 1 in 54 people are autistic. Statistically, you’ll know someone who is autistic and it might not look like what you think it should. Because as I noted earlier, most people are familiar with the word, but many could not explain what it means, what it looks like, why it happens, or what supports are needed to help people on the spectrum thrive.
I write this post to you (yes, I am talking directly to you!) after many years of hard-earned lessons have been learned. The truth is I would not have made this effort if it were not for the sake of my own child who was diagnosed about 6 years ago. I know I am selfish. I also know I am typical in this way. But for the sake of safety and inclusion, I beg you to continue reading because I selfishly want help my own child and because I know your understanding will help many others as well.
If you couldn’t even imagine a loved one being autistic, I invite you to pause and think about why not. If you couldn’t even visualize it,that’s ok; it just means you were like me and you really don’t understand autism. Either way, I hope you will keep reading.
When the fact that autism rates are on the rise was shared with me in a special education support group, the presenter warned that public education teachers like me are going to have many neurodiverse students in their classrooms in the near future and are not prepared. I felt a sinking feeling in the pit of my gut. I knew I was not prepared. “What is autism anyway and how would it look in a classroom?”, I worried. I couldn’t even imagine a class with three or four neurodiverse children.
Later on after having a child on the spectrum, I also realized my own son would be in a series of classrooms where teachers would not be able to help him adequately unless we all got a similar understanding of what autism meant.
It’s all so overwhelming. Who should be the one to help with this?
For the sake of time, let’s fast forward five years from the time of that presentation. I’ve learned a lot about autism and I am here to share that learning with you.
If I can make the world safer and more inclusive for my own child it will help others as well. But I am not going to pretend like I am some Mother Theresa altruist. The fact is I first started this advocacy work because I was scared for my child. I am not scared any more and I don’t want you to be, either. We all can be effective allies with genuine understanding and helpful education. There are many things you can do to support the neurodiverse community, but today all you need to do is read this post.
First, Autism is nothing to be cured or feared. This point of this post is primarily to help us understand the way we discuss neurodiversity matters. Once we become aware of how language impacts understanding, then we can become effective allies.
I want to begin by sharing why many parents like me generally fear an autism diagnosis. Below is an abstract written by Patricia Braus in 2017 in an academic journal:
Autism is a profound neural development disorder marked by an inability to communicate and interact with others. The condition’s characteristics include language abnormalities, restricted and repetitive interests, and the appearance of these characteristics in early childhood. The disorder begins in infancy, but typically is not diagnosed until ages two to five years. Although individuals with autism are more likely to have severe intellectual disabilities than other individuals, some people with the disorder have a high intelligence level. The cause of autism is unknown although it is probably biological in origin.
Wow. Those are some scary words written by an academic expert in a position of power. No wonder people get freaked out when they hear the A-word. I have no doubt Braus is an expert, but her language is pretty problematic right at the start of her report. Instead of wasting time unpacking the irritating and harmful semantics of her language, today I am just going to tell you the answer:
When you learn about autism from people who are actually autistic, rather than those who are “experts” because they’re written reports about and observed autism, your understanding will profoundly change for the better. Autism is not a terminal disease but it’s often treated like that because of how “experts” like Braus talk about it.
How will your understanding change if you learn from autistic people about autism?:
Instead of fearing this “mysterious” puzzle-like situation going on (as it is often presented by clinicians), there are many autistic adults who are proud of who they are and gladly share their stories with you. Search #actuallyautistic on any social media platform and prepare to be amazed. Many autistic people are incredibly articulate and often their “inability to communicate with others” was actually just a misinterpretation on the part of people in power, like Braus. But I implore you, please just listen. Process later. And don’t argue with the real experts about what being autistic means. Only autistic people are in a place to explain their experience.
Autism should be described in traits, not symptoms. This will prevent you from treating people on the autism spectrum as people who are sick and need healing.
Many of my perceptions and fears about autism were unfounded because I took a clinical approach. Autism is still medically referred to as a disorder (Autism Spectrum Disorder), not a different operating system (think Mac vs PC). In your quest for information about autism you might not “see” any answers because of an inappropriate approach that autism is a disorder. It’s not. It’s just a different order than many people are accustomed to. I now refuse to call autism a disorder. Autistic people are in perfectly fine order. I just didn’t comprehend what I was looking at because I spent way too many hours reading clinical studies about how different it was from a specific neurotypical standard that was set by neurotypicals.
Accepting and harnessing the power of neurodiversity will help solve a lot of society’s problems. I’ll tell you more about that in another post, but today I need to talk about something more pressing: the safety of autistic people.
Before I begin I will say this: I struggle to critique people in positions of power because I know at the end of the day, we are all doing the best we can. I am not anti-police, anti-medicine, anti-teachers, anti-psychologists- I am not anti-anyone. But I am unapologetically pro-safety, especially when it comes to my own child. Lots of people are aware of autism and it’s very obvious many do not accept autism. We need acceptance so parents can help their children thrive, so doctors can authentically support their patients, teachers help empower their students, and law enforcement do a more effective job when working with autistic people. We need not just autism awareness, but autism acceptance. You cannot accept what you don’t understand, so the point of this post is to help us understand autism a bit better, nothing more, and nothing less.
Autism accetpance would have helped the Utah officers who shot 13-year-old Linden Cameron eleven times. Eleven. Times. I hope you can understand why parents like me, who are also parents of Linden, would want people in positions of power to genuinely understand the autism spectrum. I know why this 13-year-old was shot eleven times. Because officers didn’t know what they were looking at and felt threatened because of this ignorance. I understand that stimming can seem scary. Especially if you hear lots of sounds and noises and don’t know these are simply a very important way people with special needs regulate their senses.
I wasn’t there when Linden was shot eleven times, but I bet this 13-year old was stimming in public. It’s the same reason Elijah McClain, a young black man who “looked sketchy” (that is an actual quote from an officer involved), was ultimately was killed through events orchestrated by law enforcement. It happened because of Elijah’s unusual appearance.
If we just accept that getting riddled with bullets is simply a part of life, we are doomed. It’s not normal, so don’t act like it. You can be outraged that this happened and still want to work with police so that this never happens again. And by the way, this doesn’t just happen with police. Abuse by parents, caretakers, educators, random people also happen daily. But of the most pressing importance is that people in positions of power are stressed out when they see neurodiverse people regulate their senses in public. A major reason for the stress – which manifests in fear- is because these powerful people are uninformed/miseducated. So let’s inform people properly so that everyone can interpret what they see correctly and help everyone thrive. But you can’t be informed if you judge stimming to be something to be “cured” or deem it rude and something to suppress.
Stimming can look like rocking back and forth, flapping hands, making noises. My son often stims by galloping back and forth and making grunting or squealing noises. The purpose of stimming is to work through a sensory or stimulating experience. That’s what my book The Case of Sensational Stims is about. You can pre-order it here until March 30, 2021.
Stimming is a common behavior of many people, especially autistic people. It is often confused for “antisocial” or “suspicious” behavior that needs to be stopped. When adult autistic people stim, it is often interpreted as a person on drugs, which might be one reason why they are more likely to be apprehended by law enforcement.
For my child, he tends to stim more when he is anxious or excited. He often takes a second to stop or respond if he needs to answer a question, and I can clearly see how someone like him could get in trouble by the police because depedning on the intensity and nature of the stim, it is difficult for him to stop or listen to a verbal command. I wrote The Case of Sensational Stims to address stimming. I did not want my son to have the same fate as Linden or Elijah. That’s the real, selfish reason I wrote it.
But on a more positive note, it’s a happy book that celebrates stimming for what it is: a way to regulate one’s sensory experience and needs. Special sensory needs are nothing to be ashamed of. They simply need to be understood.
I also don’t believe in the concept that there are “other people’s children”. Linden and Elijah deserved safety. My son will be one of the most vulnerable in society because he is not in the majority class of neurotypical. People in incredible positions of power like the officers who shot Linden did the opposite of creating a safe environment. I don’t think they intentionally set out to harm an autistic child. They didn’t know what they were looking at. We have an education problem that can be fixed. But please, do not waste your time defending these officers. To do so would be to normalize shooting children. That’s lunacy. If you feel the strong urge to do that, this is not the place for you.
I wrote this post and my children’s book to fill the gaping, dangerous abyss that exists because people in positions of power do not understand some basic things that are critically important for the safety of neurodiverse people.
To be an effective advocate I needed to do the painful unlearning of some big time misperceptions, just as I am asking others to do. The Case of Sensational Stims, a children’s book I wrote to educate all of society about the importance of stimming is the result of my unlearning. It’s founded in my new education from resources written by autistic people as well as from my time spent in a classroom and learning about my child’s and my own neurodiversity. My son’s “mysterious” needs are actually very relatable when I took the time to just listen to those who had similar needs. Typical behaviors of autistic children often begin with a question rooted in dismay (e.g. “why is he lining up his trucks!?”, or “why does she cry when I give her a bath!?”, “why does he keep saying the same words over and over!?”) and these same observations are often problematized by clinicians. Most of this unusual behavior is not harmful, but it certainly is different. And obviously, some stimming can be harmful if a person is banging their head against a wall or picking themselves until they bleed. My son often would bite hard things like bed posts and banisters. Something about the pressure on his teeth felt really good, but I feared he would only have nubs for teeth and all of my wood surfaces would have bite marks. We learned about chewlery, got him a few options, and behold! His teeth are safe and so is my furniture! It was also very encouraging to know that this was a common need and that there were stimming tools to help my child with his unique sensory needs.
Instead of encouraging others to repress their stims, we need to discover what the root of the stim is and help replace with healthy, safe behaviors. Stimming is an important means of regulation and supressing it causes burnout and meltdowns.
Before I knew better, I pathologized stimming. “He can’t keep moving around while we are at a restaurant!”, I would proclaim. I viewed my son’s behaviors like a tumor growing on his body, but if I am really honest, this was mainly because I knew others were judging his behavior and I felt bad about it. When I changed where I obtained my information, I gained a newfound perspective that empowered me to become a better parent to my child and teacher of neurodiverse students.
I realize now that all forms of behavior from all people, both neurodiverse and neurotypical, are important forms of communication. My son’s “unusual” behaviors serve a very meaningful purpose. For the first time, I saw beauty and wonder at his behavior like most parents of young neurotypical children do (instead of the chronic anxiety and dread I previously experienced when I saw him stim). And certain behaviors like running back and forth incessantly- one of his stims that led me to the path of diagnosis- was an indicator that he was regulating himself due to environmental stress. I was finally able to see it for what it was (for him, this was due to loud noise that hurt his ears). I now could support him appropriately (we use ear plugs/ defenders, or sometimes we just leave if it’s too loud). It was a miraculous yet simple discovery. I didn’t have to judge his behavior nor worry how others would feel about my child “running amuck” in a restaurant when he was really just soothing himself.
Getting information from the right sources is critical. Everything seemed to “fit together” when autism was explained to me by autistic adults (but no, for the record I don’t use the puzzle piece to symbolize autism and here’s why). I no longer hoped my son would “learn better” or “be different”. There was nothing to mourn; he just needed a specific kind of support that I knew nothing about. Everything came into focus, but I wasted critical formative years on a clinical approach to autism. If this post can prevent one parent from the agony or one child from the misery, my effort here will not have been wasted.
My transformational understanding is not overly optimistic nor does it discredit the real challenges and concerns that accompany those with special needs. But caregivers, whenever an “expert” pathologizes an unusual or undesired behavior or says it’s a manipulative, conscious decision made by your neurodiverse child, I tell you without hesitation seek a different advisor: your “expert” is a hack.
Advocating effectively is difficult. I’m not sure I’ll ever get to the final destination of total inclusion and societal harmony. I also know I make mistakes even though I’m trying my best. I’m sure some reader will be offended by something I’ve written here and inform me what a piece of trash I am because of the way I worded something. I’m fully anticipating it and ready to do better once I know better (also I will leave room for the possibility that sometimes keyboard crusaders can be wrong).
If we want a healthy, thriving, conscious society, we need to call things by their proper names and take time to genuinely learn about what we don’t understand. Just because you can “see” something, as Steinbeck noted, does not mean you actually understand what you are looking at.
At the very least, we need to believe people -all people- when they share their experiences. And if you haven’t made yourself uncomfortable by getting to know the person –not the topic– maybe that’s where you should first begin. It’s important to support where we can, and genuinely ask questions with the intent to understand. It takes time to look, see, and interpret. You might have to unlearn some things. That’s ok. This courageous decision is an investment of your precious energy. I can promise you though, the reward is worth it.
If you would like to pre-order a copy of The Case of Sensational Stims you can do so here until March 30, 2021. After that it will be available on Amazon in April.