The Other Red vs Blue Conflict

 I am an autistic individual who wasn’t diagnosed until their later 30s (even though I began to suspect I was autistic when I learned about autism in college) and I have a son who is autistic and was diagnosed in kindergarten.  As such, I’m part of two communities that should work together but are often at odds: autistic people and parents of children with autism. Having a mom for a doctor and a dad who taught science, my son Isaac is aware of the controversy between vaccines and autism. One night, he asked, “But why would your kid having autism be a bad thing?” You see, when we have talked to him about having autism we’ve stressed that it’s a different way of thinking, a different way of understanding the world, a different way of looking at reality and to him that sounds pretty cool. He knows that sometimes his friends do stuff he thinks is weird and he does stuff that his friends think is weird, but his integration into “normal” life has been fairly easy. Isaac didn’t know about how some families have major problems in communication, how some parents worry greatly about what will happen to their children after they are no longer able to take care of them, and how some people see the weirdness of autism as “less than” rather than “different” and the hardship that causes families, especially when those feelings come from within the family. I think these two views, “I am who I am and I’m pretty cool,” and “I need help in taking care of and understanding my kids,” are at the center in the friction between parents of autistic kids and people with autism and wanted to take time to talk about it.

              Ok, so I guess first things first we need to make sure everyone is on the same page and describe what autism spectrum disorder (ASD) is.  ASD is different from the “typical” developmental disability in that it doesn’t necessarily affect the cognitive or physical development of kids. As I said above, the way I understand it is people with ASD have a different way of experiencing the world than normal, neurotypical (NT), people; though it is hard to tell for sure because of each of us have a sample size of 1 when perceiving reality. As such, we see the defining characteristics of trouble communicating especially understanding non-verbal cues, repeated actions (stimming) to deal with over stimulation, not understanding social expectations, often having intense interests (yeah, any of my high school friends reading this remember me and Star Trek). In addition, there is a huge range in this difference in perceptions that sometimes go as far to make typical verbal communication and working together hard or impossible.  There is the old statement that, “Once you know one person with autism, you know only one person with autism,” so each individual has their own experience with it.

              So now that that is out of the way, why is there the conflict between autistic adults and parents? Well, to put simply we have disagreements over what needs to be fixed. Like many marginalized groups, there is a Pride movement in the community with the idea that we’re different, not less.  I was once asked by another parent “Wouldn’t you have been happier not to have autism?” and I have thought long and hard about this. Yeah, often times I felt like an outsider growing up and even as an adult, not understanding the complex social interactions.  It would be great not to need the script and checklist running through my head of what I should do when I meet new people.  However, there are strengths associated with ASD. For instance, I strongly suspect the more logical outlook has served me well in understanding math and science.  It’s well documented that autistic individuals are overrepresented in the natural science fields which leads to one of my favorite comics below.  Those intense interests have brought me incredible joy; for instance I believe I’m able to appreciate the connections in Brandon Sanderson’s Cosmere (my current obsession) going through the hints and Easter Eggs he has put in his sprawling multi-series, multi-world Universe.

The more I thought about this question of if I would be happier without autism, the more I came to believe that autism was so intertwined with who I am that it is actually really hard to imagine what type of person I would be without it. This feeling is common in the community of autistic adults and makes its way into the very language we use.  For instance, because autism is such core part of us, we tend to prefer “autistic person” opposed to “person with autism” just as you would refer to someone as a “gay person” not “a person with gayness.” Another way this plays out is support for the social model of disability. A quick description of this idea is that the way society is organized, as opposed to a person’s disability, is responsible for most of the hardships they have.  For instance, people who use wheelchairs are harmed not by the wheelchairs but by lack of accessible buildings, playgrounds, etc. Blind people are harmed by lack of equipment to read websites, crosswalks with no sound, etc. In the case of autism, autistic individuals are harmed when we attempt to make them “act normal” as opposed to understanding them and accepting the differences.

And this brings us to our Red vs Blue fight. Even as few as 15 or so years ago, the conversation around autism was dominated by groups of parents caring for children with autism. Autism Speaks is perhaps the biggest, in some ways the most troubling, of these organizations. Their videos often include scare tactics like this and this, they have rarely had autistic people in positions of authority, they have strongly supported old school ABA, they recommend parents direct their frustration and anger towards “autism”, even that happy little puzzle piece has harmful in implying we need to be “fixed”.  These ideas flow to other groups as well; in a few parent groups I’ve been in the sentiment, or actual words, of “FUCK AUTISM” is said by parents. Think back to my previous paragraph, how many autistic individuals see autism as a core part of themselves and then think how a parent’s “FUCK AUTISM” can affect them. I completely understand the frustration, fear, and exhaustion that comes with raising any kid, especially one who isn’t “normal”, but the anger directed at an aspect of the child as opposed to the situation can be harmful. Because of all this, and more, autistic individuals are often not a fan of “Light it up Blue” associated with Autism Speaks and prefer Red (a color more associated with celebration as opposed to blue with disappointment) for Autism Acceptance.

However, there are some issues with autistic individuals’ advocacy groups. There is a saying in statistics “If you want the know the average height of people, you shouldn’t measure a basketball team.” (Don’t worry, you probably aren’t the only one wondering where the heck I’m going with this) There are no explicit rules in basketball that prohibit shorter people from playing, but the game often benefits taller people and, though there are exceptions (5’ 3” Muggsy Bogues springs to mind) most players are significantly above average in height. Likewise, most autistic people in advocacy groups have an easier time communicating their needs, integrating into society, working with people than the “average” autistic person because, well, they are doing it. As such, the voices of autistic people who need the most support aren’t necessarily heard in these groups because these individuals have a much harder time communicating.  I know my experience raising Isaac who is in a mainstream school and (warning: parent brag coming) placed into the gifted program in math after scoring in the 99^th percentile is different from a parent raising an autistic child who is non-verbal. Because of this, the supports needed are also different.  They do need help in understanding their children and helping them.  They do need help in integrating their family into the broader community.  Autism does make it harder to do many things that many families take for granted. As such, we need to listen to and validate parents’ experiences as well.       

I think we also need to acknowledge that we don’t live in a world of perfect acceptance of neurodivergence and may not ever.  I know I have talked with Isaac about needing to “put on the show” or “play the game” in acting certain ways that are expected, but often don’t really make logical sense. (What is it with you neurotypicals and small talk?!? Wouldn’t you rather talk about the mounting evidence for an undiscovered fundamental force or atomic particle while we’re waiting in the checkout line at Target? I kid, I kid… mostly. But the possible new force or particle is pretty cool if you want to read about it) But one thing I want everyone to take away from this is that, even for adult me, “putting on the show” is fucking exhausting.  When working with kids, whether it is practicing in therapy or interactions in real life, autistic kids will need breaks. Everyone with autism needs a safe space. They need a space where they are able to relax and act naturally without judgment, without criticism, and without correction. The best thing you can do for any autistic person is make a space like that for them.

Like many things, there is a degree of truth to both feuding groups: groups like Autism Speaks are harmful in presenting autism as the disease to be hated, the puzzle to be solved, or the problem to be fixed. Things like the original ABA Therapy, where autistic children were taught “normal” behaviors, often with physical punishments for failing to do them, can be abusive. (You can read more about the history of ABA therapy here). On the other hand, autism advocacy groups often fail to give voice to those of us who need it most and their animosity to groups like Autism Speaks too often boils over to parents just beginning to navigate treatment options leaving those parents without support except from groups like Autism Speaks.  Autistic individuals have a variety of needs, but the most fundamental is to have their rights protected; we need to make sure we always look at all supports from their needs. At the same time, we need to support the parents who are struggling and help them figure out how to communicate and relate to their children. To put in bluntly, autistic people need to be accepted for who they are, but parents, especially new parents, of autistic children need more support from the autistic community.