Last week I wrote about “The Kids Who Beat Autism,” and that most of the online autism community was furious with that article – because most of them, or their children, face people who don’t want to accept them/their kids for who they are. I suppose part of me would love to get to that place – maybe I feel jealous. For me, it’s hard, because of the way my child tantrums (decibel-shattering, self-injuring, store-stopping, floor-writhing, unending) and the way he communicates what he wants and shows what he’s remembered (doesn’t). If this is the way he is and will always be, I suppose I have difficulty accepting that. 

But why should my challenge be so unlike most other parents’? If some others are so accepting, that seems very post-1970s to me, very much an ongoing reaction to a prior era of over-discipline and spanking and “children should be seen and not heard” and such. If there are parents who believe they are raising their kids as some kind of free spirits, I’d say most of them are kidding themselves…we provide guidance, we enforce rules, we make 100 choices a day that direct who they’re going to be. These “free” parents sound like they would say of their plants, “all I did was give my plants water and sun, the plants did the rest” when in fact, if they ask a gardener, they’ll know that choice of water, soil development, placement and movement, and nearby plants and bugs all played a role in what that plant turned into. So when I say I’m not accepting my child exactly the way he is right now, I don’t think I’m that different from most parents…who aren’t kidding themselves.

Today I’m going to share a conversation I had with a Facebook friend. (I hope we’re still friends after this!) Two of her fb friends chimed in after me. I’ll just call them Jo, Beth, and Amy, after the Louisa May Alcott novel.

Jo posts a meme that reads: “Calling a human being ‘low functioning’ imposes upon them the destructive bigotry of low expectations. Calling them ‘high functioning’ can dismiss their very real challenges.

To put it another way, the bifurcation of human beings into functioning labels just doesn’t work. Autistic and not, we are ALL far, far more complex than any two-word modifier could ever convey. (Thank God.)” -Diary of a Mom

Me: So what’s a better euphemism to differentiate between people afflicted with autism in terms of their ability to communicate and *apparent* ability to understand and remember things? I feel it’s naive to say that such distinctions never need to arise

Jo: Daniel Smith-Rowsey you are missing the point. The concept is flawed, not the language. It is perfectly ok to talk about specific function, strengths or challenges in an individual to figure out how to teach, support or provide access. It is not ok to define people in a binary, simplistic, and misleading way.

Me: Sometimes people doing the former don’t realize they’re doing the latter

Beth: Low functioning is an insult; high functioning is a threat.

Me: From today’s long New York Times Magazine cover article about autism: “I’ve been studying autistic kids for 40 years,” [Deborah] Fein [clinical neuropsychologist at University of Connecticut] says, “and I’m pretty good at what I do. But I can’t predict who is going to get better and who’s not based on what they look like when I first see them. In fact, I not only can’t predict who is going to turn out with optimal outcome, but I can’t even predict who will have high-functioning autism and who will be low-functioning. There’s so much we still don’t understand.”

I don’t get why anyone would reprimand this woman, Fein, for saying what she said – and I don’t see how the original quote could be seen as anything but a reprimand.

My 4yo son was at a pool party last weekend, and the teenage lifeguard wouldn’t let him swim with his water-wing-brace b/c “we don’t allow those in this pool.” I said he was special-needs (I didn’t say pools are some of the only places he’s happy) but he’s not drooling, his eyes aren’t crossed, and so this lifeguard was skeptical and told me No. Now, I needed an adjective that conveys “extremely afflicted” or “severe” or something and based on my son’s meltdown proclivities I didn’t have time for a very long drawn-out “well if you look at his IEP…” so I don’t see what’s wrong with “low functioning” in that case, in my son’s case.

Clearly HF and LF are both labored euphemisms, made by people who care. If you don’t have a special-needs kid, you could easily live 75 years in the USA without hearing either. So here people like Deborah Fein are trying to be sensitive, and we’re saying they’re not being sensitive enough? I don’t like that. Just my 2 cents

Jo: Daniel Smith-Rowsey , you could just say, “I understand the concerns about the safety of water wings. I’d like to request an accommodation for my Autistic son and will take responsibility for watching him closely.” If the lifeguard isn’t going to make an accommodation, the label isn’t going to help.

Jo: I do find this quote from Fein problematic. The lives of people with disabilities are meaningful and valuable and functional ability or need for support doesn’t diminish that. “Get better” and “Optimal Outcome” are loaded, judgmental terms in this context. Fein implies that the goal is for disabled people to be non-disabled as opposed to accepted and supported to be full participants in life and community. Everyone can learn skills. If anyone is not “getting better” in terms of learning skills and experience, participating fully, developing relationships, and getting opportunities to serve, then we have failed to provide an appropriate education, supports and access. Optimizing outcomes is about maximizing potential and participation. And we should presume competence in everyone.

Beth: @daniel You can’t go through life without hearing those labels if you are a person with a disability, either. It’s not just our parents who have perspectives on this sort of thing.

Me: Some people wouldn’t like your suggestion of “autistic son,” favoring “son with autism.” To me that’s similar. People like Fein are trying. I don’t want them to stop or slow their research because of running into memes like this. Sometimes you do separate groups, even binarize. Should male and female bathrooms be made coed out of increased sensitivity? You use “label” as a label. I don’t always want my non speaking kid grouped with the – how should I put it? – more NT-like kids, and as I scour the Bay Area for services, I appreciate websites I can understand.

As for the separate issue of getting better and optimal outcomes, I believe Fein would agree with most, maybe all, of what you say. I do. “Getting better” doesn’t have to mean altering the afflicted person’s behavior. Let’s say you have a para back from Iraq who will never walk again. Getting better might mean moving the shelves where she can reach them. Doesn’t mean they’ll ever walk or that they’re bad for not walking. Sometimes that’s what a therapist is doing for someone with autism – moving the metaphorical shelves

Jo: Daniel, a lot of research money is being wasted on asking the wrong questions and using the wrong methods. I don’t want researcher to stop or slow their research because of memes. I want them to stop or slow it because they have listened to Autistic adults valid criticisms of their research questions, methods and analysis. (And yes, the world would be a better place if we didn’t do the silly binary gender bathroom thing because gender isn’t binary either and it is hard on people with disabilities who have caregivers who are not the same gender. It causes a lot of unnecessary stress). I don’t want any kid, (non-speaking or talking) “grouped” with anyone. I want them all fully accepted and included in any group they want to join. I agree that the language on websites should be understandable.

Me: Unless she’s lying, Fein has been doing this for 40 years – is that longer than you and I have been researching autism, together? Even if not, it’s a long time…at this point telling her “you’re doing it wrong” would be like telling Alice Munro she’s writing wrong. I think you’re right to point to labels, because “autism” may be the most misleading one…for every Temple Grandin that says she would never want to be “cured” there are…well…let’s say severe cases – like my child hitting himself severely – where something needs to change and get better. Perhaps the spectrum idea is obsolete and diagnoses should change.

I’m not comfortable with “included in any group they want to join.” Should I get into Harvard? Become an Australian citizen? Perform surgery? The idea would seem vaguely socialist/one-worldist, except that would imply a level of grouping you reject.

Some grouping is inevitable, though services/plans can be individualized. Knowing that and fighting for equal access and opportunity is laudable, but asking for a world without grouping is like asking for a world without water

Amy: Many families and clinicians have discovered it is more effective to examine *why* a person is self-injuring. Is it a response to frustration because other attempts to communicate have failed? Is it an attempt to manage other sensory distress, such as stomach pain, head lice, bright lights or loud noises, or hyposensitivity to sensations? Treating it as a “behavior” to be “extinguished” does not address the person’s needs.

If you had a “limping and groaning behavior” after spraining your ankle, would you rather have someone punish you for limping or groaning and give you Skittles if you ignored the pain, or would you prefer “rest, ice, compression, and Advil”?

Amy: Also, science should not be compared to creative writing. There are many equally good ways to write a novel, even covering the same topics or plot points, but there is only one reality and Science aims to describe it as accurately as possible. If you start your research from false premises and don’t change them, yes, it’s possible to do research for 40 years and get it wrong.

Here’s an example from my lab where I did my Master’s in biology a few years ago. It’s about 30+ years of getting it wrong because someone made an assumption that turned out to be false and ignored contradictory evidence.

My thesis advisor had been publishing papers about copper the effects of copper on nerves and behavior since the late 1990s, but one of the reviewers kept correcting him when he wrote that copper was neurotoxic. The reviewer claimed that copper wasn’t neurotoxic because in HIS lab, back in the 1980s, the worms died at copper concentrations that were too low to cause behavior changes. Therefore, any “behavior changes,” such as altered reflexes, were just the effect of being sick. So my advisor would grumble and change the wording to get the papers published.

I did a thesis project that visualized neuron damage using worms with glowing neurons (Yay gene splicing!) and one of my committee members said I needed to show that they weren’t just dead and rotting instead of alive and paralyzed with damaged neurons. I found a dye that detects dead worms and showed that they were still alive at far higher concentrations of copper. If this had been a PhD program, I would’ve explored some literature leads we found suggesting that the copper was messing up potassium-gated channels on the muscles.

So this leading researcher in heavy metal toxicology had assumed that copper couldn’t damage nerve cells because his worms were paralyzed and he thought they were dead. He ignored all the other evidence that copper causes nerve damage, such as neurological symptoms in humans and other animals exposed to excessive copper. He bullied less established researchers who disagreed with him.

Note: Copper is an essential nutrient–you just don’t want to overdo it. Many common foods have copper that your body uses in the part of your cell that converts food to energy. But don’t store water in copper pots, don’t get your water downstream from a copper mine, and don’t drink from a creek next to a vineyard because copper sulfate is an “organic” antimildew treatment. Copper sulfate is the same thing we used in our lab, though ours was higher purity.

Me: [Amy’s real name] – thanks for the thoughtful replies. I don’t feel I said anything that implied that we’re treating our son’s behavior as something to extinguish. You’re right that creative writing /= science (though moving to “good ways to write a novel” missed my point — Munro is known for short-story writing, and her Nobel Prize speech included the hope that short stories are no longer seen as subpar, so you see people do tell her “you’re doing it wrong”), but I do feel there’s a certain audacity in little old us challenging a scientist quoted in the most emailed article in the New York Times. Not that we can’t be right, but we better have a LOT of contrary evidence – perhaps backed up by links to refereed articles. I mean, I get it, leeches were standard practice when the NYT began, and eugenics was considered legitimate science well into the 20th century…so yes, someone like Fein can be wrong, but proving her wrong requires more than I’ve read here.

My original objection was to the rejection of HF and LF as terms and as methods of separation. I teach a class on diversity (in film), but even I think that’s over-PC. I would have the same problem with someone who challenged [Jo] for saying “autistic son” instead of “son with autism” (because our diagnosis shouldn’t define us, n’est ce-pas?). Frankly, as someone whose son may be diagnosed as mentally retarded (and I can get into this more, but my life with autism is an open book at my blog,, I don’t even mind the term “retarded.” If you have nine healthy worms and a tenth one with stunted growth (I’m alluding to your story), you need some kind of term…retarded may be appropriate. Throughout this discussion, I have been hoping for substitute terms for HF and LF. I get that labels don’t define us, of course I consider my precious snowflake just that, but if you’ve studied biology (sounds like you have), I can’t imagine too many biologists saying “grouping doesn’t happen.”

…that was it. I guess it’s the internet, no one ever changes their mind, people talk past each other until they run out of things to say. I do feel that my mind can be changed, however. I’ve seen it happen and can provide many examples, including things I do as a parent. But I suppose that sort of implied potential evolution runs contrary to the nature of the internet, where doctrinaire dogmatism reigns. I may have a cool blog, but I’m still doing it wrong.