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

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Different. But Equal?

I’m about to work out some thoughts on the Interwebs that I should probably just keep to myself. Because I’m sure that if anyone stumbles across these, I will surely receive a slew of comments accusing me of being “ableist” or “hateful” towards my son and all other Autistics out there.

The fact is that I cannot bring myself to feel that Autism is simply another perfectly acceptable way of seeing the world, one that is just as “good/satisfactory/useful/valid/fill-in-the-blank” as a “neurotypical” mind.  And yes, I put quotations around “neurotypical” because I also have a hard time uttering this word without discomfort at best and sarcasm at worst. That word in particular seems so manufactured in an attempt to provide Autistics with something that describes the rest of us who don’t…well, there I go again wanting to use the word “suffer” but feeling that my hands are tied because I am also supposed to understand that Autistic people don’t suffer whatsoever from their Autism; they simply see the world differently and that is a wonderful thing.

I have read countless blogs and essays written by parents (mothers, usually) praising the world/god/universe for sending them such a bundle of valuable life lessons in the form of an Autism, who are grateful for their Autistic child and wouldn’t have life/their child any other way. This child is sometimes portrayed as some sort of gift provided to the world in order to teach us respect for each and every one of god’s creatures.  That, or people believe that their god has chosen them for the sacred task of raising and protecting an Autistic child – something about their back being “broad enough” to endure the burden. However the creation story goes, there are many parents out there who are apparently happy to accept Autism as another mystery of the universe that they should endure with a smile on their face.

Or at least that’s the way it feels when I read it.

And I have also followed a few blogs written by high functioning adult Autistics who can communicate with the world just fine, and use their blogs as a platform that encourages the world to accept Autistics as they are and make greater accommodations so that the minority – Autistics – can live more easily in a majority – “neurotypical” – world.  From their point of view, it feels like Autism is akin to a political party that has the temporary misfortune of not being in power; however, those of us lucky enough to be in the majority by virtue of our birth should accept Autism as an alternative approach to life, one that is just fine the way it is.  Keep your head down, play the neurotypicals’ game, and wait for a day when the world will accept Autism, along with Mormonism, homosexuality, etc.  These Autistic bloggers are apparently speaking on behalf of those who cannot. People such as myself are “ableist”, which is equal to being racist, chauvinist, sexist, and an otherwise terrible person.

However, I do not believe that my son’s Autism is a gift – to my son, my family or the world. I do not believe that it is a condition/world view/disability that I need to accept without making any effort to change or eliminate it.  I believe that we must work very hard to stop the Autism pandemic in its mysterious, relentless tracks.

I do believe that my son is a human being equal to me and worthy of the same human rights granted to those who are not Autistic. He deserves our love, respect, and a good education, and he most certainly deserves accommodation from a world that is not yet able to meet all of his Autistic needs (sensory, linguistic and otherwise). And I will work very hard to secure all of these for him.

But I will also work very hard to “cure” him, even though I understand that there is no “cure” for Autism, and probably little chance for “recovery” (I’ve read the statistics).  And I see absolutely nothing wrong with the fact that organizations such as Autism Speaks exists (although many Autistics take great issue with an organization whose mission is to “cure” the world of…them).

Why, you might ask, would I try to snuff out something that so many people have who lead perfectly good lives?

Because Autism has brought our family so much suffering. And I’m pretty sure I’m not alone in feeling that our lives as a family and my son’s life as an individual would be MUCH better without Autism.

My son cannot communicate his needs to us without the help of our guesswork, prompting, sign language and word supply (so that he can repeat the word back to us). He cannot make a choice between something he wants and something he does not want, short of grabbing the item himself and blowing off communication altogether. He cannot tell me that he wants to go home when we are out running errands. He cannot ask me for help.  He has no friends.  He cannot go through 15 minutes of time during the day where he is not told to stop doing something because he is either squealing in a quiet place, destroying something by kicking it or twisting it or squishing it, picking up/tasting garbage, or taking something that he shouldn’t – repeatedly – because he has no impulse control.

His sister cannot talk or play with him. He barely acknowledges her existence save for a rare moment where he holds her hand in the back seat of our car.  She may even end up supporting him financially and otherwise for the rest of her life, once my husband and I are dead. She didn’t ask for this, nor does she deserve to be burdened by a human being that her parents chose to create, rather than be free to make independent choices as to where she will live, what she will do for a living, and how she should spend her money.

I work two jobs (seven days a week, plus five nights) to help my husband pay off the debt we have acquired to provide various therapies for my son.  Indeed, my husband worries about having a heart attack due to the stress he feels when faced with all of our bills.  We are not saving for our retirements or our daughter’s higher education (nor can we even humor the idea of sending her to dance/art/music classes during her childhood that I hear about so many other parents doing for their own children).  Family vacations lasting longer than four days and not falling within a three state radius are out of the question. And when we do get away, we have to make very strategic decisions about room arrangements and then Autism-proof each room we are in while we are away (this includes restaurants, cars, hotel rooms, friends/relatives’ homes, etc.). We cannot stay at any gathering for longer than two hours at most before our son begins to act up, at which point we make our final apology for something he should not have touched/done and make yet another quick exit.

We cannot rest for more than two minutes when we’re with our son before either my husband or I have to investigate what he’s up to: is he destroying something? eating something he shouldn’t? peeing/pooping in/on the shower/bathroom floor/public sidewalk? escaping our home and running down a city street? pulling a glass vase off a shelf? emptying the contents of the cabinets in our home and moving everything to another location because – for whatever reason – that location is more correct than the original one? throwing a shoe out of the window of our moving car? endangering himself? jumping into a pool/lake/fountain before one of us can get there in time to stop/guard him? running into the kitchen of a restaurant or behind the counter to grab food that isn’t his when I’m simply trying to buy myself a coffee? knocking over a shopping cart and emptying all of its contents because he reached for something on a shelf that I told him repeatedly that he could not have?  Let me tell you: leaving our house to do something is an exhausting experience filled with yelling, destruction, and embarrassment (and not because our son is Autistic, but because he is about to or already did destroy something or do something utterly gross).

We don’t know if our son will ever learn to read, tell someone his name (god forbid he runs away and gets lost), graduate high school, learn a skill that might allow him to bag groceries or ring someone up at the gas station.  We don’t know what will happen to him after we die.  We don’t know that someone might not abuse him if he should end up in a group home one day.

Get it?  The list goes on and on.  AND ON.

My son does not have Aspergers. He is not mildly Autistic. He cannot speak very much. He does not know how to DO anything except eat, sleep, play in water and twirl cords. It is not a matter of teaching the world how to accommodate his strange interests, or training him how to be polite and make eye contact when having a conversation with someone. He’s not going to solve the world’s greatest math problem or mystify you with his amazing Autism-given talents.

Our home is a fortress that has been redesigned to prevent my son from destroying parts of it or accessing things that he shouldn’t. Because he can’t stop himself. Discipline, consequences, explanations? These things mean nothing to him. We cannot go to other people’s homes very often because he might destroy something of theirs or escape into the street.  Our weekends are interminable and filled with exhausting attempts to control our son’s bad behavior (and I’m not talking aberrant; I mean BAD). We. Never. Relax.

So when I read about the attempts of high-functioning Autistic people to encourage the world to see Autism as different but not less desirable as a world-view/neurological condition, that I should learn to accept it and appreciate all of those lovely little “quirks” and skills that Autistics bring to the world, that there is absolutely nothing problematic about Autism…

I DISAGREE.

I would not wish our lives on anyone.  And if I had the energy left to do something to prevent Autism from taking root in another child’s brain, you better believe that I would do it. Without shame or apology.

Because this shit sucks.

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