I was a little surprised by reactions to a recent NYTimes article “The Kids Who Beat Autism”, such as Steven Kapp’s reaction (just an example, some other reactions were similar). I thought the NYTimes article was a mixed bag, and better than most newspaper coverage.

There are a lot of things here to talk about, but In particular I find there’s valuable nuance and gray area when we talk about learning useful skills vs. being forced to pass as normal. Perhaps it would be constructive to dig into some of that — so I’ll give it a try.

Background

I tend to be on the same page as ASAN and Thinking Person’s Guide to Autism much of the time. I believe myself, my son, and my father all met autism diagnostic criteria — at least as children, but with important traits continuing into adulthood for my father and I so far.

I was raised with unconditional support for and celebration of quirky traits. I do not believe there’s anything wrong with any of us which needs curing or fixing, and I believe in our family the “symptoms” of autism are one aspect of traits which also result in strengths. Here’s my attempt to informally describe what autism could be about for us.

As always I’m trying to figure out what all this autism chatter is supposed to mean for myself and family. We don’t feel broken and never have; but several professionals felt an autism diagnosis was “clear” in the moderate (not borderline) range for my son, and I see little difference between him and all accounts and memories of my own childhood. He’s quite possibly happier and more socially competent than I was. I had quite a rocky road through childhood.

For me right now, autism is a kind of externally-imposed bureaucratic label that I’m a bit ambivalent about, rather than something I identify strongly with. I find the science interesting when I can figure out how and whether it applies to my family.

Some personal thoughts on “passing” and learning social skills

There’s such a fuzzy and difficult-to-navigate line between learning skills and normalization, between getting through the day in a way that works and unhealthy pretense.

If someone knows a lot about autism, they might notice that I have no close personal friends, have an unusual nervous laugh, and rarely make eye contact. But I don’t think most people read those things as autism; I believe they perceive them as quirks, if they notice at all. And these things are not a big deal in most contexts.

I suppose I could explicitly present my traits under the heading of “autism,” but the thought hadn’t occurred to me until two years ago.  As an adult, I work in a professional field with lots of other people I now suspect would have been diagnosed as autistic when they were kids, using modern criteria. All of us grew up when verbal, can-go-to-school autism wasn’t known; Asperger’s Syndrome was only recently invented when we were kids. We could interpret the difference in autism prevalence now, vs. 30 years ago, as the number of undiagnosed 40-something adults — that’s a LOT of people.

Many people my age have “passed” their whole lives, and perhaps most still have no idea about autism or that it may apply to them. I didn’t until I had a son who went through the diagnostic process. We are “passing” without even knowing it! We’ve never had people explicitly trying to fix us or treat us, but still I’d guess almost all of us have “toned down” autistic traits relative to our younger selves.

When I was a kid, catching on to a few realities greatly decreased my daily misery. Realities such as: people don’t care to hear about my arcane interests at length; people have pointless conversations just to form social bonds, and like to have you express interest; throwing an angry fit is counterproductive and embarrassing; it does matter to others what clothes you wear; etc.

I figured this stuff out during high school, a good deal later than average, and largely because some people finally pointed it out. It was not naturally clear to me. My parents encouraged me for years to just be different and tell others to go to hell if they didn’t like it. Overall, I’m glad they did, but it was not without a price.

“I’ll just be myself and other people can go to hell” led to daily stress for me. The constant bullying and confusion was simply too much. Of course it’s a privilege that I can opt out, but as soon as I learned how to avoid the stuff that made others attack me, I did avoid it. And it was so much better that way. This wasn’t because of parental pressure, they encouraged me to be different; it was because of pressure from other kids.

For me as a kid, being “weird” was not some sort of conscious decision or self-expression, it was simply ignorance of and disinterest in the elements of “not weird.” The cost in misery was high, and I had no idea why people were so mean to me. I think it would have been great to wear less-unfashionable clothes and know how to have a boring small-talk conversation, a little sooner in life.

For me there was one lifelong negative effect of taking so long to understand social conventions: lack of close personal relationships. I had so many early failures and bad experiences in social interaction, that my adaptation was acceptance. I’m comfortable with myself and find that my family, and professional and casual acquaintances, are enough for me. It’s so much effort and anxiety to try to do more, and I just don’t need it.

But I don’t think this was how it had to go. I don’t think avoiding social interaction is “my true nature” so much as an adaptation to being bad at social interaction — a response to failure. Some traits that I had created a feedback loop.

From my experience, the message I’d have for my son is a little bit more nuanced than either “act normal” or “let your freak flag fly.” Something like “you can do and be what you want, with our unconditional support, but go into it with eyes open about how people will react” — and also “sometimes these strange socially-oriented people have a point, some of the stuff they do is fun in moderation, so don’t be afraid to go with the flow and try it sometimes.”

We’ve arranged for him to practice playing and social skills every day, because I think there’s a lot of value to learning this stuff sooner rather than later. Why go through years of misery before finally figuring it out? I didn’t enjoy that. It was hellish. It wasn’t a conscious decision, it was cluelessness, and a lack of options created by a lack of skills.

We can teach skills in a respectful way that’s about teaching a human being a skill that they can use, or we can teach the same skill in a harmful way that communicates “what is wrong with you, you need fixing.” So much of this is about attitude — teaching the same skill, using the same method, you can convey either respect or contempt for a person.

“Passing” and “acting normal” are complicated ideas. Surely it’s useful contextually to avoid awkward situations. I do recognize that some don’t have the luxury of passing. I do recognize that we should not require people to do it. But I also feel that, after many long years of bullying and confusion as a child, “acting normal” in various ways is a very useful skill for my mental health. I strongly prefer to keep the focus on my ideas and work rather than my personal traits.

Knowing what’s socially expected in a certain context need not be normalization. The difference is in attitude; are we going with the flow to avoid rocking the boat when it’s no big deal for us, or to achieve our own ends, or are we going with the flow in a way that’s too much to ask, that doesn’t work for us, because we’ve been shamed into it?

And as I noted, there are some ways I do not “act normal” — and that includes the often-cited eye contact. I can’t even explain why I don’t like eye contact, it just seems uncomfortable. Fortunately I’ve never had the experience of being told to fix this.

So I strongly respect and want to affirm the feelings of those who feel “acting as expected” has been harmful for them, and that they need supports.

At the same time, I think it’s pretty complicated in practice, for both autistic people and parents.

We need to help people navigate the complexity and nuance.

False dichotomies in autism parenting

Some experts on parenting advocate what they call authoritative parenting, which contrasts with authoritarian and indulgent parenting. Wikipedia has some info on this framework. The claim is that kids need structure, guidance, and rules, but in an environment of love and acceptance.

I often feel that debates about autism “treatment” are setting up two bad alternatives, where sensible people are going to find a better, middle path. For example in this BBC documentary about ABA, there are two kids. One kid I believe is around 12 and only eats liquid shakes. Every day they offer him solid food as an option but without pushing or nudging in any way. He never tries it. Another kid is in preschool and only wants liquid foods. They sit him down and make him eat a hot dog, even if it makes him vomit. They show him a few weeks later happily eating the hot dog, but the way they got there was tough to watch.

Are those the only two options? I don’t think so. There are good options in between an extremely strict “because I said so” parent, and a parent who tells their preschooler “whatever you want to do honey, no rules here!”

Just as those extremes are wrong (in my opinion, of course) for non-autistic kids, they are probably wrong for autistic kids too.

Note that the difference between “authoritarian” and “authoritative” isn’t in what kids are asked to do, but in attitude — in how they are asked to do it.

I’ve lost track of how many things my son was afraid of doing or didn’t want to try, that he now loves to do and demands to do constantly. Part of parenting is nudging just the right amount — think of swim lessons, and how swimming teachers can be experts at slowly making kids more comfortable with the water. There’s a happy medium here, between pushing someone too far past their comfort zone, and never pushing them at all. Parenting is about this sort of balance.

It is very hard to know when learning skills and learning to participate in new activities crosses the line into being inauthentic or untrue to oneself. Especially when we’re talking about young kids.

This has nothing to do with autism, really. It’s just about parenting in general. (In most cases, by the way, we’d probably do well to talk about autism parenting, and autism education, instead of autism treatment.)

I’ve read more than one autism blog where a parent describes a swing from one extreme to the other — from “warrior parent” trying to fix their kid, to total acceptance and no guidance at all. I don’t appreciate those extremes, they both seem wrong to me.

Getting back to that New York Times article — can we tell from this article where these parents were, what approach they took? There are some clues, but overall I think it’s a little tough to know. Even if a parent tells us, what they say may not match what they do.

When we react to this sort of article by firing flames back and forth opposing the extremes, it isn’t helping most families. I guess it’s good to smack down the people who truly do go too far — there are abusive parents out there, even murderous ones, and plenty of evil institutions.

At the same time the average parent doesn’t learn anything from this clash of the extremes. They’ve already rejected the clearly-out-there options, and now need to wrestle with the reality in the middle.

As I meet other autism families in my community, a common issue is inadequate teaching of skills (through no fault of the parents, it’s an issue of access to resources). Kids without effective teaching can be naive clueless kids like I used to be, wondering why everybody’s so damn mean, and without access to any effective program to help them. Normalization doesn’t even arise. Because there aren’t resources to teach much at all, the issue of what to teach hasn’t even come to the top of the list.

Kudos and criticisms for the NY Times article

Here are some things I’d change about this article.

1. The headline is terrible (autism as thing-to-be-combated).
2. It is from a privileged perspective — several families who could afford, or at least manage to somehow pay for, intensive therapies out-of-pocket.
3. It does not adequately explain the limitations of the “optimal outcome” studies.
4. It does not adequately question the “single unified disease” account of autism (even though these optimal outcome studies are one bit of evidence against that account).
5. It uses the language of disease, such as “recovery.”
6. It could have more subjective reaction from the “optimal outcome” people who were interviewed; what are their struggles and successes? What advice do they have for others?
7. I’d love to hear from a parent who didn’t go through a “warrior phase.” I’d identify with them more.

Here are some things I liked:

1. It is appropriately dismissive of nonsense “biomed” “cures.”
2. Autistic adults at least exist in the article (though they are not the focus).
3. It presents the science that a kid can meet the diagnostic criteria at one point, even very clearly so, but not at another point. It is helpful to state that autism follows many different trajectories and we do not know how to put people in two crisp, clean buckets (or any number of crisp, clean buckets). There’s a very harmful popular view —usually accompanied by a belief in “misdiagnosis” —that autism can and should be only “low functioning” while “high functioning” should be separated or not diagnosed. This popular view results in “not like my child” opinions and “autism is just an exaggerated excuse” opinions and “high-functioning kids don’t need services” opinions and “the world is full of moochers taking our tax dollars” opinions, and other such junk opinions. The article pushes back more than average on this kind of thinking.
4. It does present the neurodiversity perspective; though it’s presented in he-said she-said format without taking a strong stand, it is in there, and in most articles it is not there at all.
5. It includes Catherine Lord’s caution against “getting to perfect” and advice not to “concentrate so much on that hope that you don’t see the child in front of you.”
6. The closing realization from a parent that “He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him.”

Overall, I felt that the average person would come away with a more accurate view of autism after reading this than they had before. They would start to ask some of the harder questions. They would be exposed to ideas such as neurodiversity. It’s a lot better than the average newspaper article about autism, low as that bar is.

I believe our understanding of autism needs to become significantly more complicated (see this post about Lynn Waterhouse’s book. and some thoughts on “misdiagnosis”). This article felt like it went in that direction.

It’s a lot better for a parent to believe that “some kids struggle a lot less than others, for unknown reasons which may include lots of practicing skills” than to believe “I need to cure my kid using chelation and bleach.” Yes this article says “beat” and “recover,” but the closing paragraph is a mom saying that warrior attitude was a mistake.

As I read it, the article does not advocate the warrior approach; it is quite clear that 90% of kids will not “recover”, and that these “optimal outcomes” are largely unexplained (rather than because a parent did such-and-such).

I thought Ruth Padawer tried harder than most reporters do. I appreciated the effort.

Regarding “optimal outcome”

The big problem for me is the spin, via the words “recovery” and “optimal.” It is an interesting finding that the diagnostic criteria are imperfect and may no longer apply as people age. But,

• we could say “no longer meets criteria” instead of “optimal”; just the facts, not the value judgment, please.
• the word “recover” drags in the whole bogus metaphor “autism is like the flu” (as belabored on this blog in the past, that metaphor misleads in a host of ways).

Nonetheless, I find these studies helpful in understanding myself and understanding autism. I love to to see challenges to simplistic, fixed-mindset narratives.

Finding a better path

The options are not “normalization and cure” on one side, and “let a child do whatever they want and don’t teach them anything” on the other side. If we want to help parents, and their kids, we need to explain what those options are.

Effective social skills do involve a certain amount of behaving in ways that people expect. When does that become harmful normalization? Well, that’s a hard question. I’m not sure anyone in this discussion is answering it. But parents have to. Whether their kids are autistic or not.

I find my way as a parent based on my own childhood experiences, mostly, though I do my best to see how my son differs from me. This may or may not be right for my son; who knows. But it’s what I have to base things on, and at least my son and I have some important things in common. Many parents don’t have that connection. What should we tell those parents? Let’s give them more they can act on.