The Short Bus Diaries » Confessions About Life With an Autistic Son

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Being Honest Doesn’t Make Me a Terrible Person

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.

jillsmo - November 15, 2013 - 6:42 pm

*highfive*

Speak your peace, sister. I got your back.

Julie Sparks - November 16, 2013 - 8:24 am

I love it, Jill. I’m sure you will get some nasty feedback, but you covered all MY favorite points. You love your son. You do not like his suffering. Autism Speaks has its issues, but a “cure” is not a crime. Your blog is your place to say your piece.

I hate the division that exists in the autism community over this and so many freaking trivial points. In accepting that we are all different can’t we accept our differences? Ah, another blog post ….

Happy Birthday to your son!

Laura - November 16, 2013 - 10:22 pm

Your Newsflash says it all for me. I adore my son and love him to the ends of the earth but if given the chance, heck, yeah, I’d take autism out of the equation. Why? To make his life easier. I hate to see him struggle on so many levels. I want him to have friends and participate in activities and understand social cues. Keep up the good fight. We’re all in this together.

Carlee - November 16, 2013 - 11:29 pm

You’re certainly entitled to hate autism and wish your kid wasn’t autistic. But there’s a risk that your son understands so much more than he “seems” to and there’s really no downside to “presuming competence” on his part.

Given the boy and the autism are one and the same (if for no reason other than there’s no way to separate the kid from the autism), you run the risk of your precious kid interpreting “I wish my kid wasn’t autistic” as “my mom doesn’t want or love me; what my mom really wants is a completely different kid. A non-autistic one”. And my heart breaks for the kid who feels mommy would 100% rather have a different child.

(There’s a great non-fiction book by Andrew Solomon called “Far From the Tree”, about parents raising kids that are unlike them. Kids with autism, dwarfism, Down syndrome, musical prodigies, etc. interestingly, the parents with kids with “stigmatized” differences — ie all kids in the book except musical prodigies, the Joshua Bells and Jay Greenbergs — very, very quickly see the silver lining to their disabled kid, while the parents/siblings of the prodigies have a much, much rougher road).

Lisa @ AutismWonderland - November 18, 2013 - 10:35 am

No judgement here. It’s hard. And as much as I love my son, just as he is…I’d be lying if I said there weren’t times when I wish things were different.

Shawn Weston - November 19, 2013 - 7:35 pm

Love your post. I tried to express the same feelings to my friends on FaceBook and felt like I was the only one who felt that way. Someone I was friends with actually said if Autism Speaks statement described my feelings then I should get therapy and learn to accept and love my son as he is. The things people say! Thanks for putting this out there!!!!

Maya Wechsler - November 19, 2013 - 7:48 pm

Shawn, you should kindly point them to this post and advise them to keep their opinions to themselves. 🙂

Jeannie - November 25, 2013 - 12:08 am

The only thing I really want to disagree with is the decision to keep him confined mostly to home. My daughter is “low functioning” autistic and I will not limit her world because other people may be irritated by her screaming, humming, beating, kicking, etc. if I take her to eat with the family in public. If it is a problem that a child with a disability may or may not cause a scene, it is the problem of the person observing, not mine. If my daughter throws a toy in Walmart while in the midst of a fit from being overstimulated, I do not care what some stranger watching thinks. I will not imprison her in our home because her behavior may bother a stranger who does not know what we have been through together. And the more I have exposed her to new experiences and new places, the better she is learning to cope with these experiences and the less intense the fits from over stimulation have become. My expectations for her may be higher than what she will ever reach, but when I stop expecting her to progress, she will. And I will be the last person to ever give up on her!

Nancy Leger - November 25, 2013 - 2:21 pm

I’ve just read my very own thoughts. 🙂

Anne - November 26, 2013 - 1:57 pm

A friend of mine just sent me to read this today and I’m glad I did. As I brace myself for an annual mandatory celebration (all celebrations are a test for me), she knew I would take comfort in someone seeing that not being autistic would be a better life.

I remember my friends from the Easter Seals camps – there were no disabilities that didn’t involve some suffering from time to time. A parent may certainly thank God that their child is alive, but you can’t deny that our lives include suffering. Our suffering becomes part of our existence as human beings – an undeniable piece of ourselves. Noone would wish this life for their child – I wish more parents would say that. Some of the garbage that my mother was told – that I was her cross to bear, that I was an inspiration, that there was a special place in Heaven for me – was just so unhelpful and didn’t feel truthful.

I’m now high functioning as an adult and was never as severe as your son, but I would much rather have been born without autism. I accept that my disability is part of who I am, it’s just that – acceptance of a condition that I have to manage every day, much in the way that someone with Type I diabetes has to carefully manage their condition. I have more decent days than bad ones. Sometimes I have a really good day. I have to remain vigilant. I have to be careful about doing everyday tasks like brushing my teeth in just the right way (a terrible combination of both motor skills and tactile issues). I have to be careful to make all my doctor appointments so that I remain a compliant patient who can live independently. I have to fight to look normal – not making a cry or rocking when someone puts a slice of turkey on my plate – because it makes other people nervous, which then makes me upset and nervous, and creates a horrid spiral downward.

I’m thankful that I’m in amazingly good shape by comparison to some of my peers. My mother fought to get me here – fought institutionalization in the ’70’s, tried radical therapies, became an expert, and never quit. I fought to get here. But it was just that – a fight, a struggle. At times she suffered while I was blissfully ignorant of her struggle on my behalf. Other times, I suffered as we tried some new therapy or a new teacher. Then there were the days we both suffered as I had a meltdown and banged my head over the available underwear selection now that I was in women’s sizes.

Honestly, I don’t think my mother or any mother wants their child to suffer. It’s OK to hate that your son suffers and to wish that it wasn’t so, for him or for other children. I wish that more people were willing to be honest about the complexity of emotions involved in parenting a child with a disability. It’s exhausting work and every good day is hard earned. You are clearly a fierce advocate for him and for your daughter and they are lucky to have you. I wish you all more good days.

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