Sunday, July 29, 2012

Autism Really Is No Excuse

I was pottering around on the Internet, and came across this blog post.

The writer has an 11-year-old with autism, was on vacation (in San Francisco, oddly enough), and right before their scheduled tour of the Bay, the child needed to use the bathroom. Since they were out and about in a crowded area, the only available bathroom was a public one, with a line. BUT a big problem: the child is not able to wait in line. So she asked the first person in line (it sounded like a long line, so he had probably been waiting a while) to let her son go ahead, because he had autism. The man refused, and instead lectured her on her poor parenting skills. She was very angry, and thus the post.

Obviously the man was out of line (because 1. you shouldn't tell strangers how to parent and 2. if someone is desperate enough to ask to cut the bathroom line, you should probably just let them go ahead, both as a basic human decency and because it saves trouble/gross accidents for everyone involved).

But the whole situation as described puzzles me. How on earth can she even expect to go anywhere in public (let alone heinously crowded tourist traps) with a child who can't wait? And why can't he wait? It seems ridiculous.

R is (as far as I can tell) neurologically normal. But normal at 17 months old means her ability to tolerate frustration and control her impulses are at the lowest point in a human's lifespan. Even she can wait. She waits in line all the time, because that's part of city living (especially in a densely populated place like Singapore). While she's too young to wait for the bathroom, she has frequently waited to be fed, for water, and for other biological urges causing discomfort, so it seems analogous. She can't wait nearly as long as an adult (or even an older child), but waiting 15 minutes+ is generally entirely possible, at least as long as I am willing to help her do it (by providing active distraction, soothing and palliatives). And she isn't even that good at waiting, compared to the typical child in Singapore (parents here are generally stricter than I am).

Being unable to wait would be a totally crippling disability. Everything in the modern world is about waiting: wait to eat, wait to buy things, wait in traffic...And pretty much all social interaction is also centered around waiting (in the guise of 'taking turns'). After the first year of life, someone who truly can't wait would be barred from all public life and most personal relationships.

I suspect that her son is, in fact, able to wait. (He has two siblings, after all; presumably he must occasionally have to wait for his parents' attention, for example). Indeed, in her account, her son was waiting (even without misbehaving, which she suggests might be one reason the man was unsympathetic, as he couldn't 'see' the disability). She seems to be the one unable to wait, out of anxiety over what might happen (the fact that they were running late for their tour might also have been a contributing factor).

I feel like a jerk for thinking this (and perhaps I am in fact a jerk), but I wonder if part of her son's problems are due to her parenting. She seems to have very low expectations for him (I mean, I expect more from R, and she can't even talk). She also seems to encourage his self centeredness (particularly unfortunate as this is already something that people with autism struggle with): for example, he didn't tell her he needed to go to the bathroom until "just as we were about to board", inconveniencing the whole family (and ultimately causing them to miss the tour). There is no mention of discussing with him the problems that his behavior caused, or going over what he ought to do differently in future. In fact, she seems to think he has no personal responsibility whatsoever. This is unfortunate for the public, of course, but disastrous for him: how will he grow into a functioning, mature, thoughtful adult otherwise?

Partly this reaction is due to the parenting book I'm currently reading (The New First Three Years of Life, by Burton White: totally awesome BTW). He discusses the process of spoiling children very thoroughly, and I feel like the scales have fallen from my eyes. I frequently have seen parents doing all the things he describes (and have done many of them myself), but never really linked the parents' actions with their children's bad behavior. Now it all makes sense.

NB: I don't know that much about autism and don't personally know anyone with the disorder. So this could just be my ignorance talking: if you know better, feel free to tell me! (Links to actual information/studies etc. are especially good.)


  1. While your reasoning is very logical, it is very clear that you have not had as much real experience with an autistic individual. As someone who has lived with an autistic sibling for fifteen years, I feel the need to point out a few things.

    I don't know how serious the condition of this woman's son is, but my brother who is considered to be on a lower level of severity autism wise does have a problem with waiting. It doesn't means he can't wait; if told sternly, he understands that he must wait, but he is unable to express his displeasure because
    a) he doesn't understand the concept of having to wait in the first place
    b) he cannot properly form the sentences to express how he feels.

    And so, what can result, depending on his mood that day, is a tandrum that ranges from whining to a full blown scream-fest. it isn't pleasant, and even less so in a public place. We do not encourage these tandrums, and we never stop trying to teach him to behanve appropriately in public, but depending on the situation (some environments cause him more stress than others), he can react badly. We believe that they are lessening and continue to work with him in hopes of limiting public reactions as much as possible.

    What the writer may have been trying to do was prevent such a senario.

    I do agree that maybe she should take steps to train her child in waiting and patience, but it can take year and years before he is able to understand or actively practice restraint without discipline or coercing and he is still young. With two other young children, it can be very hard to constantly enforce things.

    My brother is fifteen and growing bigger and bigger. For the most part, he behaves very well in public and is learning tackle public transport. Even so, he does talk aloud in public and he will fail to heed or sense the needs of others.

    While some might say that she shouldn't bring her child out in the first place, I have to disagree. I feel that every child, or person, for that matter, has the right to go out and experience the world. Not everyone may understand the reasons why they act the way they do, but I don't think it means they have any less right to use public areas than anyone else. As citizens of our country and a human being, they should be allowed to step out and learn to manage the world.

    It may cause inconvenience or annoyance to other people, and we make sure to apologize when it does, but I dream of the day everyone is educated well enough on Autism that the public can show grace and understanding.

    1. Thanks so much for sharing your personal experience. You are right that I don't have much (any, really) experience with autism. It does sound very challenging for everyone involved, but especially the parents (one reason I felt like a jerk for thinking these thoughts, since obviously the mother of an autistic child already has a very hard row to hoe).

      I do agree with you completely that everyone, even those with disabilities, has the right to experience the world. That's why the waiting thing seems so important to me, because being unable to wait means that you are unable to participate in most common experiences (since they all involve waiting).

      What confuses me is the difference between being autistic and being a toddler (this sounds bad, I just mean in this instance). R doesn't understand why she has to wait either, and can't talk (except to say "no", her new favorite word). And of course she has tantrums. But if I change my behavior significantly (like by not making her wait), then she will just fall out of practice. While a full-on tantrum is bad (since no learning is possible in such an agitated state), doing things that she finds extremely challenging (like waiting) is immensely valuable, because then she is pushing her limits and developing new skills.

      It sounds like this is what your family does with your brother (encouraging taking public transportation, a stressful/triggering experience for most neurotypical people). I just felt that the blogger wasn't doing this enough with her son, especially considering the central importance of waiting in virtually every sphere of life.

      I hope that everyone (including myself) can show grace and understanding to autistic people (and everyone, really). I want to remember that I can never know what challenges others may be facing, so being as tolerant and kind as I can is always important.

    2. The difference is your toddler will eventually realize that a public meltdown wont help anything and that to use the bathroom sometimes means waiting in lines... and the autistic child will not. Retaining these types of social pressures are not going to impact him as much or if they do, it wont be as quick or easy as an average toddlers' progression. Its important to note that it is called and autism spectrum, so there are so many variations and problems and intensities that it is impossible to know how that child functions without being a part of that child's life. I love my life giving people the benefit of the doubt - I am thankful to not have a bladder problem and can easily wait one or two more minutes.

  2. I didn't read the blog, but from personal experiences working with autistism, there are so many things that could have been going on. Children with autism usually have communication problems, ie: they cant communicate things well when there is anything going on. I suspect what may have happened is the child waited to long to imply that they needed to potty, and the longer they waited in line the longer the mom had to worry about ruining the day for the family, because an accident might mean leaving the park or event and returning to the hotel.

    1. That's a good point that she might have been worried about an accident. It didn't sound like it from the post, but maybe she wouldn't want to post that online? Funny how saying something like her son has bladder control issues would probably have gotten her much more sympathy: the bias generally against psychological ailments (as opposed to physical ones) is so strong.

  3. I didn't read the blog post either, but my immediate thought that maybe he doesn't have bladder control (I didn't either for a long, long time). I know very little about autism as well, but I believe one of the effects is a lack of empathy, which means that the individual may not only be physically compromised, but they are unable to understand why they need to wait in a long line in the first place.

    Plus think of the social stigma. If your newly trainer toddler messes their pants, everyone understands. If an older child does, everyone feels uncomfortable and if his peers see he may be teased and bullied.

  4. As autistic, I had to LEARN to wait when I had to.

    My mom taught this to me.
    The only excuse that mum could have, is if the kid urged to go to bathroom.

    You may know someone with autism. But sometimes is not easy to recognize someone with HFA, because they do their best to learn to live a normal life.

    1. I obviously don't have autism. But for whatever reason I do find social interactions challenging, in that what seems obvious to other people had to be learned by me, explicitly. I have all these various rules to help me with social interactions (like how to respond if someone tells me X). Just going with my impulse is not a good option, partly because it's going to be the wrong thing, and partly because I often would just have no clue. Sometimes it feels rather mechanical to me, but luckily most people are not that conscious of others' mental states and thus do not notice.

      This is to say that I identify with your description of learning to "live a normal life": ie, faking it successfully.