I’m irritated about something this morning. It greatly offends me when people talk about treating or curing autism or symptoms of autism. Autism is not a “disease” that needs eradication. There are certainly symptoms that are challenging and ones that the autistic individual and those in his or her close relationships would potentially benefit from managing or minimizing. That said, perhaps it’s more of a semantics issue than a stark difference in meaning, but terms like “management” or “coping resources and techniques” are highly preferable to me than “treatment” or “curing.”
I immediately become defensive, and offended, when someone suggests or touts the benefits of some sort of treatment to “fix” autism. My brain operates differently. I won’t deny that. Some of these differences are undesirable; I’m the first to admit that I have some qualities and symptoms attributable to autism itself rather than just my innate personality that I’d never consider “pros.” However, equally valid and present are the gifts or benefits of this neurodiversity. These autistic traits seem to be conveniently ignored or improperly credited to just my personality when making the argument that I should be “treated” for my autism. There are a lot of things “wrong” with me and that I’m working to change or improve, but autism is not one of them. It’s invalidating and hurtful to suggest that finding a cure for autism is a good thing. Autistic people, by and large, I imagine, don’t want to be cured. We are who we are and each of us is as unique and valuable as every neurotypical person. We are look differently, act differently, and feel differently just as everyone who is of “normal” neurology is individual. As individuals and as a whole, the people who comprise the vast autism spectrum are as worthy as everyone else. Eradicating or curing the “disease” insinuates that we are not enough as we are, we are broken, we are lesser, and we are the poor souls who burdened the world before our condition no longer existed. That’s not a mindset that feels respectful. I support autism research that looks to better the services and techniques available to autistic people and their loved ones. It’s absolutely a fact in my mind that certain symptoms and presentations of autism are very severe, limiting, and uncomfortable, even for the individual. For instance, my rigidness and near impossible adherence to a routine is an autistic trait I’m trying to lessen. It makes my life harder and there’s little to say about its redeeming benefits. Therefore, I fully support efforts or services aimed at helping individuals alleviate these types of symptoms. In this way, “treatment” can be helpful, but these treatment strategies, in my mind, should look more like behavioral therapy and supports and not neurological reprogramming techniques that intend to actually restructure the brain to make it more neurotypical. This seems like more than just a semantics issue.
I’d be remiss in a discussion of this topic to not mention that every autistic person is different, and I don’t think of one autistic person being more or less than another. I think when people hear the word spectrum, many view a linear scale running from normal or very mildly autistic to severe autism and disability on the opposite side. On this line, any autistic person could be mapped based on the “severity” of his or her autism “affliction.” In this model, for example, when Asperger’s Syndrome was a separate diagnosis, those with this diagnosis would certainly fall to the “mild” side compared to a non-verbal autistic person. I don’t visualize the spectrum this way. I see a sphere, like a color wheel as if it were three-dimensional like a disco ball. In this view, the spectrum has multiple axes instead of the simple x-axis of the linear model. It’s not a perfect mathematical model; it’s something I’ve invented in my head, so it doesn’t adhere to the customary three axes of a three-dimensional figure either. Instead, it’s like each mirror on the color wheel disco ball forms its own axis cutting through to the tiny mirror on the opposite side. There must be 50 or more axes in this way. The presentation of any individual’s “case” of autism can be mapped somewhere along the inside or outside of this sphere. The different axes represent various autistic traits such as rigidity of mindset, stimming or stereotyped movements (hand flapping, rocking, etc.), communicative ability, IQ, restricted interests (special interests), echolalia, empathy, theory of mind, etc. Essentially, the expansive list of symptoms each receives its own axis running through the sphere. The evaluation of an individual’s presentation of each of these characteristics could be used to find the resultant place in this comprehensive sphere of the Amber-invented reimagination of the spectrum. Therefore, comparing two people’s autism severity isn’t really practical or accurate. Someone might struggle a lot more with social cues but have an easy time understanding things from another person’s point of view while a different autistic person may have lots of friends and do well in social environments but have very restricted interests and engage in routine stimming. Who is “more” autistic? Neither. The two people are simply different.
This lengthy diversion aside, there are some characteristics that make one person’s life with autism probably harder than another person’s. It would be short-sighted to make a blanket statement that the magnitude of autism’s effect on no two people can be compared.
My inability to know what every single autistic person is like makes me reticent to speak on behalf of all autistic individuals and their loved ones in terms of the support of the usage of “treatment,” “curing,” and “prevention” or “elimination.” I imagine that there are some people who do desire these efforts and support research focused on these goals. I’m not here to oppose their thinking or argue to the contrary, rather, I’m simply speaking my opinion based on my experiences, feelings, and values. I fight every single day to keep my head above the water with the iron-weighted undertow pull of my incredibly low self-esteem. I hardly ever feel like I am enough or that I am as worthy of love, happiness, value in society, etc. as other people. It’s been a struggle since the dawn of my tenth year of life and one I am committed to fight every day so that I learn that I have as much to offer as others and that my existence brings meaning, joy, or benefit in some way. From this point of view, with this goal of beating down my inner demons that tell me I’m worthless or undeserving or “worse” than others, I cannot have things in my life that tell me my condition needs to be treated because it sends the message to me that I’m broken and need to be changed. Don’t come with that agenda if you expect an open reception. This may be one topic that, at least in this stage of my life, I’m not ready or willing to compromise my position. As I’ve said countless times, I’m a work in progress, so I hold no expectations that I won’t be amenable to being more open-minded down the road, but for now, I occupy this mentality. I hope that someone, perhaps someone else who is autistic, understands.