1/18/2013

Loaded Words: Why Talking about "Recovery" and "Cure" Confuses the Real Issue


recent study found a subgroup of children and adults who met criteria for autism before age 5 but no longer had the necessary symptoms for diagnosis.  Furthermore, this group did not differ from typically developing people in social interaction and communication or on most language subtests measured, and most did not differ in face recognition ability. Of note, these were not the most mildly affected autistic people examined; while they functioned somewhat better socially early on, they had equally extreme communication deficits and repetitive behaviors.  The authors dubbed this the "optimal outcome group," the New York Times picked up the story, and before long, even researchers in respected journals were intimating that "recovery" from autism might be possible.  Not everyone is happy about this, and predictably, the old debate over whether to "cure" autism flared up.

Words like "recovery" and "cure" naturally provoke arguments because we don't all mean the same thing by them--or by "autism," for that matter.  In such cases, we may have real differences of opinion about what autistic people are like and how they should be treated, but even if we don't, the words make it look as if we do by bringing along baggage.

What is autism?  If we just use the current DSM as a guide, it's a disability characterized by lack of typical reciprocal social behavior; communication deficits; unusual repetitive behaviors; insistence on sameness, and obsessive interests in things or topics.  If we also include research and the lived experience of autistic people and their families, autism also includes motor dysfunction and atypical, often erratic sensory processing.  Notice that autism does not necessarily involve: language disability, general developmental delays, low IQ, seizures, gastrointestinal problems, and food allergies.  A person on the autism spectrum is more likely to have these problems than the average person, but they're not an essential part of autism.  Many with autism don't have any or all of these characteristics.  These traits just come along for the ride; they're what we call "comorbid diagnoses."

That's not how all parents define autism.  A parent who knows no one with autism other than their child in particular likely defines "autism" as their own child's unique package of abilities and disabilities--after all, that's the name they've been given.  Whatever other disabilities their child has--being nonverbal, low IQ, general developmental delays--they lump together with the DSM characteristics, and to them, autism is the whole dysfunctional package.  So when a parent says they want to cure autism, they're not talking about autism proper, they're saying they want their child to be able to speak, stop having meltdowns or self-injurious behavior, and be able to live independently as adults.  When an autistic adult says they don't want to cure autism--speaking, of course, of autism proper as described in the DSM--such parents get confused.  They think autistic adults are arguing against their child learning to speak, and so on (a particularly sophisticated example of this sort of misunderstanding occurs in this Slate article).   Autistic adults similarly think all such parents are trying to cure autism as a whole, including the positive aspects, when a lot of these parents couldn't care less about real autism, they just want their child to develop skills and overcome developmental delays.  Same word, different language.

When you're dealing day to day with a severely disabled child, the question of which is the "real" autism may seem abstruse, a matter for academics.  But it does matter when it comes to questions of what you're trying to cure, and why.

Being nonverbal or having severe language delay is not the same thing as autism.  It isn't even a part of autism.  Not only do many autistic people not have these characteristics, but some people who are nonverbal or severely language-delayed don't have autism.  Consider those with Specific Language Impairment, a severe language deficit that cannot be explained by hearing loss, general developmental delays, autism, or difficulties making the physical movements involved in speech.  They can have difficulty both producing and understanding speech, they start talking late, and their spoken output is extremely limited.

Delays in self-care and daily living skills that worry so many autism parents occur frequently in intellectually disabled people.  Low IQ and global developmental delays can occur in a variety of conditions such as Down Syndrome, Williams Syndrome, Fragile X, and other chromosomal mutations.  People with such intellectual disability are often used as "control groups" in autism studies precisely because they're generally not autistic.

Severe disabilities in IQ, language, and daily living skills are real and can prevent people from living independently and having the ability to participate in many activities at home, school, and in the community.  However, they are not the same thing as autism.

For this reason, I never ask "how autistic" or "how severely autistic" a person is.  If I want to know how they function in general, I might ask, "how severely disabled are they?" or, "what can they do?" or even "what are they like?"  I might ask about a specific, crucial area of functioning, such as "can they talk?" or "are they in mainstream classes?"

I do not support curing autism.  I don't know if it's possible to disentangle the eye for detail, the prodigious memory, and the ability to see things as they are and tell it like it is from the symptoms listed in the DSM.  But, if I could make it so that every person could talk, use the toilet, perform basic self-care skills, and feel no need to injure themselves, I would do it in a heartbeat.

Yes, one can communicate without speaking, and attempts to do so should always be acknowledged and valued, just as speech would be.  Yes, written and signed language convey meaning just as well as spoken language.*  Yes, the way we treat people with profound disabilities makes it even harder for them to participate in the ways they still can.  And of course, people with severe disabilities have feelings and rights that matter, and their lives have value, because they're still human beings.  Some may argue that complete independence should not be the expectation for anyone (I'm not debating the merits of this position here), but being dependent is only a choice if one has alternatives.  Without the ability to do otherwise, it's a sentence forced on one from the outside.  And as empowering as alternative communication methods may be, wouldn't it be even more empowering for them to just be some of the communication methods one can choose from?  No one should ever have to be nonverbal if they don't want to be.  So I support any ethical research or programs that would eliminate these sorts of severe disabilities.

Does that mean I support a cure?  I avoid the word, because of all the baggage it brings along that I don't intend.  But eliminating severe disabilities--making skills available to everyone--is, I think, what many parents want when they say they want a cure.  They may be using the word autism, but they probably don't care about autism, they just want their kid to function now and as an adult.  I think that's what most people on both sides of the "cure" debate want.

Even though most people probably agree on this, the debate over whether to cure autism persists because we use the wrong words; we don't say what we really mean.  So, if we really mean autism, as defined by the DSM (what I call "real autism" or "autism proper"), we should say "autism."  If we mean severe disability, we should say that, and preferably explain what sort of disabilities.  If we mean we want our child to be just like Johnny next door, we should say that.  If we mean we don't care if they're always a little quirky, we just want them to have the skills to do what they want in life, we should say that.  This may sound quixotic, but if we drop the loaded language and say what we truly mean, many of the arguments will disappear, and any that remain will concern not words, but the real issues.

Update 1/26/13:  If you'd like to see the idea of "cure" unpacked by an autistic person, you should read this post by Unstrange Mind.  She similarly talks about the traits in herself she would like to change and the ones she would prefer to keep.  She also raises the issue of what form a cure would take--crucial for deciding whether to support a potential "cure."  Are we talking about a genetic test, like current ones for Down Syndrome, a pill like the medication for bipolar disorder, or something else?

*However, not all means of communication are equally useful.  Language--whether spoken, written or signed--simply conveys emotions and abstract thoughts that pointing at pictures can't.