So there’s a big kerfuffle/hullabaloo/blog-a-thon out there at the moment regarding Autism Speaks, its ongoing failures, and its recent call for action to fix/address/cure/prevent the autism crisis in American from spreading.
First, I must confess that I don’t pay much attention to Autism Speaks or any major autism groups, whether they’re run by autistic advocates, parents, or rich white people with autistic kids. I don’t have the bandwidth, as they say here in D.C. I focus on my life, advocacy for my son, my two jobs, my daughter, my husband, sleep, the occasional Fat Tire beer, etc. I am aware that Autism Speaks has some major debacles under its belt, including 1) a failure to include any autistic people in any significant capacity in its organization; 2) its much-discussed minute budget allocation for helping families and individuals pay for therapy (their focus is apparently almost 100% on fundraising and on research for a “cure”); 3) their lack of action with regards to legal and social measures that encourage the complete integration of disabled people into schools, workplaces, and political institutions. Autism Speaks also created a promotional video that features a mom who, in the presence of her autistic daughter, discusses her urge to kill herself and her daughter after her daughter was diagnosed (pretty awful stuff to consider doing, admit in front of your daughter, and feature in a marketing video). In addition, Autism Speaks has been accused of painting a bleak, “pity-me” picture of autism that will encourage hostility and fear of autistic people, and possibly their murder. Please don’t fire back at me with corrections to my brief overview of Autism Speaks; like I said, I am only loosely aware of the organization, its crimes, its weaknesses, and its budget (although I have done some preliminary reading).
Secondly, let me be clear that this post is not to criticize anyone else for their opinions about Autism Speaks, or their approach to living life with autism or with an autistic child (and please don’t get started on that “people first language” stuff. I don’t have time to sit through your political correctness lesson. I prefer “get to the point” language. Also? There are actually tons of autistic people who prefer the adjective to the three letter pleasantry–look it up). All of you are entitled to live your lives as you see fit. In addition, I think we can all agree that America provides us with some nice laws and social norms that support respectful discourse on topics that may be divisive in nature.
Now that all of that is out of the way, I can move onto my main point in this post: I am not a terrible person, a bigot, or a would-be murderer because I wish my son was not autistic. And I’m not calling for autistic people’s alienation, disenfranchisement, sterilization, murder, or any other terrible thing I could potentially be accused of by admitting publicly that I support measures and research to prevent the “spread” of autism from taking hold of another human being.
Yes, I said “taking hold”.
I know that, for many parents and autistic people out there, they wouldn’t have their child any other way. Perhaps this is stated by parents who can look upon their autistic child (young and grown) and recount the numerous valuable life lessons their child and a life with autism has taught them. Perhaps their child is higher functioning (also, please don’t bother trying to explain to me why I’m not supposed to use the term “high” or “low” functioning–to me, these are incredibly useful, efficient terms). Maybe their child and family members have learned coping mechanisms that allow the autism to truly serve as only a small part of who their child is. Or perhaps this person believes in a god, and has come up with a satisfying rationalization for why life is the way it is, autism, skin color, sexual orientation, body mass, hair color and all.
On the other hand, I feel like this “not having one’s child any other way” thing has almost become this trite pledge of loyalty (and possibly a mantra that is hopefully repeated until the speaker truly embraces that opinion), a story many parents tell themselves, even though they secretly wish that their child was not autistic.
Well guess what? I do wish my son was not autistic. Why? Because our life (his, my daughter’s, my husband’s, and mine) would be SO MUCH easier without it. And I resent the implication that, by being honest and speaking my truth, I will face criticism, possible bullying, and outright hatred by parents, advocates, autistics, and so on, suggesting that I want my son dead, or some equally terrible thing. While I acknowledge that there is a serious possibility that the “fear mongering” spread by organizations like Autism Speaks will result in the alienation (at the very least) of autistic people, I am not an organization, a public figure, or anyone of significant consequence on this planet. I’m just me. A mom who nearly has more than she can handle during her brief life on earth, thanks to this charming thing called “autism”. I am entitled–legally and otherwise–to speak my mind, particularly when it is my freedom to describe my life with my own words that allows me some space in an otherwise bolted-down, limited life.
Also, wishing that my child was different is not equal to wanting him removed from my life. There are plenty of loving and loyal parents out there who have wished that their child was/had more or less of something, because that something makes life hard, whether that “thing” is defiance, ADHD, shyness, empathy, selfishness, allergies, etc. (I’m sure that someone will jump in here and dissect that statement to illustrate that autism is different from all of those things I just named (please see previous statements about people first language and political correctness).) Newsflash: it’s possible to love my son wholeheartedly and simultaneously wish that he wasn’t autistic.
My son’s “version” of autism, as I’ve mentioned previously, is not a small part of who he is. It’s pretty much everything–at least right now. I will skip going into the details, for fear of people labeling this post some sort of request for pity–because it is not. Suffice it to say, we do not live with a teensy bit of autism in an otherwise broad and multifaceted life. Autism–now, and for the foreseeable future–is pretty much everything in our life.
In addition to my son, I also love my daughter. We do our best to create a second life for her that is less affected by autism so that she does not live with the level of stress and emotional pain that bubbles up to the surface of her parents’ life a couple times a week. She does not yet understand that autism governs her parents’ finances, autism requires that her house be locked down like a prison, and autism is the reason she can only have friends come over when her brother is being taken care of/working with a therapist upstairs or outside of the house.
My son is relatively happy (as far as I can tell, because I can’t communicate with him much). However, his life is limited, just like ours. He spends the majority of his time receiving ABA therapy–both in and out of school-during the day, the evenings, and on the weekends. He can’t go to public events, restaurants, birthday parties, or playdates. His lack of self-control on many days, his obsession with food and banging on objects, glass, and walls, and the inability for us to monitor him and simultaneously pay attention to the rest of the world while we are out with him means that we need to keep him in a controlled space. Perhaps he would not label his life as one of suffering, but it’s quite possible that, if he knew how much more freedom he could have–were he not so significantly disabled–he might also vote for a non-autistic life.
And no, my life is not only filled with suffering. My husband and I also find time to occasionally get out for a movie or the exceptional night away, thanks to a therapist or family member who can stay home with the kids. We have jobs. We smile. We have happy moments. We enjoy life, to a certain extent.
But the buzzing fluorescent light of autism is ever-present in the background of our lives. And that sucks.
I’ll say it again: that sucks.
And there is absolutely nothing wrong with wishing that my son’s life (his days filled with being told “no”…his body gripped tightly by another human during every moment spent outside our home in order to keep him safe or from doing something he should not…his inability to make his wishes, opinions, and feelings known to everyone around him), as well as our life, was not governed by autism. Because guess what?
Life without suffering is better than life with suffering.
Taken on its own, that statement–unless your religion tells you otherwise–is pretty much universally true and acceptable to state in public. And autism makes all of us in our family–my son included–suffer, to different degrees.
This post is a long one, and for that and only that, I apologize. But I am writing this to publicly acknowledge, without any shame, that I wish I could cure my son of his autism–but I know I cannot. Also, I want to prevent other families from having to live as we do. My son’s version of autism is an extreme one. And I have a hard time agreeing with people–whose children can speak, go out in public, make choices, control their bodies, and otherwise function at a much higher level than my son–who tell me that I should celebrate autism…that I should appreciate all that it has taught me…that autism is only one part of who my son is.
Please. Don’t. Bother.
I’m not buying it. If that’s your truth, and you really believe it, good for you.
But it’s not my truth. And it most certainly isn’t my life. I challenge you to live my life (one that is lived without the opiate of religion) and convincingly argue that autism is a blessing. Autism Speaks may fail in a lot of ways. But their description of a life lived with autism is completely accurate, with regards to my own life.
Bring on the torches and pitchforks. I’ve gotta go make some birthday cupcakes for my son now.