Is this really neutral, everyday terminology?


Let’s say a neurotypical (not just non-autistic, but neurologically typical) child is born. Call her Kate.When Kate is born, she can’t walk, talk, understand what is said to her, or feed herself. Being that this is the case, her parents are well-armed with early intervention and treatment strategies. She gets Breastfeeding Intervention, and later immense, unprecedented progress is made and she graduates to being spoon-fed. She gets Speech Therapy every day in the form of talking to her all the time in a particular specialized way designed to elicit interest, understanding, and speech. Her treatment also includes giving her interesting toys to treat her incredible lack of fine motor skills and to hone her perceptual skills and eye-hand coordination, as well as many other interventions.

These early intervention and treatment strategies are successful, and she eventually begins to walk, talk, and feed herself. But there is a lot she does not know about the world that she lives in. Beginning at the age of four, she is sent to a taxpayer-funded institution for several hours a day of intensive therapy designed to teach her about various aspects of the world. This treatment is wildly successful and in a few years she can read, write, add, subtract, and so forth, and is even capable of comprehending some amount of science and history.

When she is not in the institution, she is doing play therapy and music therapy. Play therapy consists of supervised play with other children who are also in play therapy to get their exercise, learn social skills, and learn more about how to function in the world they live in. She is dropped off once a week for one-on-one music therapy in which she is painstakingly taught the rudiments of the piano. She is, of course, highly limited in her ability to play the piano, but it is thought that this will be beneficial to her emotional and intellectual well-being. Sometimes she also goes to a day program called Girl Scouts with lots of other girls her age.

To teach her responsibility and daily living skills, there is an intervention at home called the Chores Method. Her parents delegate certain simple instrumental activities of daily living to her, such as washing the dishes, vacuuming the carpet, and cleaning her room. If she does not do these things, then a privilege such as watching television or going out to play with her friends is taken away from her.

When Kate is seven years old, the doctor discovers that she is lactose intolerant, a relatively common condition. This explains her crankiness and the regression and stomachache she experiences whenever she drinks milk. When this is treated, her behavior improves both at school and at home. Her parents view this treatment just the same as they view all the other treatments they have been through to get their daughter where she is today.

As Kate grows older, the treatments and interventions are changed to reflect her age and increased progress and maturity. As she reaches the transition to adulthood, she is given pre-vocational training and encouraged to think about what kind of job placement she might want.

She is also encouraged to choose between one of several residential placements. She ends up electing to move to a group home with two other adults who share the same apartment and support each other with paying the bills and daily living tasks. They receive extensive assistance at home from plumbers, electricians, and repair people who are all trained to do what is outside of these individuals’ capacity. Farmers grow, raise, harvest, and slaughter the food that the poor limited souls cannot grow for themselves, and truckers take that food to special facilities called Grocery Stores staffed by even more people. While they have undoubtedly made extensive progress since they were born, it clearly takes a lot of support just for these young women to get through their days and they are highly dependent on other people for their survival.

I am describing, of course, the life of a non-disabled middle-class American kid from birth to early adulthood.

Several people have told me that terms like ‘treatment’, ‘therapy’, ‘intervention’, and ‘symptoms’ are neutral terms when describing their autistic children’s traits and education. Or that these words are justified (for all aspects of their children’s lives, mind you) on the basis that their children have something on the order of lactose intolerance (which, when it happens to non-disabled people, never-gets called a ‘co-morbidity’ either).  Or that these words are basically no big deal.  If so, I would really like to know if they describe their non-disabled children in anything approaching this manner, or if they would appreciate being seriously described in most of these ways for every aspect of their own lives. Because I’ve rarely seen anyone do it.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

20 responses »

  1. Pingback: Letters from Lisa » Blog Archive » a post that everyone should read

  2. This reminds me of JB Handley’s argument:

    “It is hard to believe that NDs, who pride themselves on scientific rigor, are willing to accept a blanket statement that children ‘get better naturally’ as if there is no explanation for WHY they ‘get better’. Plus, getting better presumes that autism is something you can leave behind, rather than a permanent way of being.”

  3. Nicely done, Amanda. Both of my boys are going to the pool shortly. It’s not swim therapy for one, and not for the other just because one hits the autistic spectrum. Neither one could swim without intervention and substantial teaching time.

  4. There is nothing neutral about this language. It is language that allows certain “schools” to avoid prohibitions against corporal punishment by claiming that it is instead “aversive treatment,” when both are nothing more than the infliction of pain to discourage behavior. The only difference between punishment and treatment is whether the victim of it is disabled or not.

  5. That’s brilliant! So clever! You have perfectly captured how the labels ‘therapeutic’ and ‘intervention’ are slapped on activities in a more or less arbitrary fashion. Childhood largely consists of having your abilities developed, mostly through the efforts of adults. However when a disability is involved, recreational activities like horseback riding or art become medicalized.
    Your blog should be required reading for everyone considering a career in special education, or any of the various ‘therapeutic’ professions.

  6. WOW ! I never thought about this perspective before !! I can just imagine a conversation with some people who believe that they are totally self sufficient. Thanks -and I am waiting with baited breath to hear you on NPR.

  7. Tried to point out once that education for everyone is called just that – education, based on everything from Piaget to Maslow. Get a different child and suddenly because they’re going to have to do something different – it’s therapy.

    Then there are ordinary things dressed up in psychobabble. Our Jonathon said that there is a behaviorist technique called ‘Time Out’ ™.

  8. I can’t even remember where we said it now, but just a couple of days ago one of us (probably myself) wrote a brief paragraph complaining about uses of words like treatment, therapy and especially intervention in educating autistic children. I think I suggested “autistic children need to be educated differently from non-autistic” or something.

    Language shapes thought, people get most of their ideas about life from the media, and the media need to stop using those words. Even “working with” is better. And I’d like to get five minutes alone in a room with whoever on the Tribune used the word “reverse”, as in “working with autistic kids early helps to reverse the condition.” I also find myself correcting people who insist on using the word “improve” to mean “stop behaving in an overtly autistic manner”.

    Treatment and therapy suggest that autism is a mental illness, decades after it’s been proved to not be. Intervention sounds as if the kids have been getting into the liquor cabinet.

  9. Kristina: I don’t know how to answer anything about alternatives, really. Because it’s hard for me to understand how or why people even use the terminology I use in this entry. I keep wanting to say “Call things what they actually are, not what the process of medicalization warps them into.”

  10. ¿Presumably? terminologisers would call things what they actually are, if only they/we (I try to avoid jargons, but that doesn’t equate to succeeding, especially where one has to climb through a thicket of assumptions to say *anything meaningful) … if only they/we could *see* what things actually are. That perception seems to be something to do with whether or not an ‘expert’ is involved; and currently, expertise resides in medicalising and psychlogising. [I almost typed ‘pathologising’ for ‘psychologising’; my fingers know a thing.]

    And, of course, whether one is subject to medical/psedomedical pathologising has to do with whether one’s seen as equal or not (“equal to what” is always unasked). Here we go round the Mulberry Bush.

  11. Looked at in this terminology, I have no longer “passed” for NT all my life, rather have lived the “special ed.” life that I was meant to all along.

    In high school I didn’t understand why, but I felt comfortable hanging out in the special ed. room. I found out about AS in the 90’s and thought, huh… maybe I was one of “them”, one of “those disabled people” after all. I thought that hanging out with them or not rejecting them was, at very least “the right thing to do”, if not some sort of good deed… and turns out I was one of them, only staying with “my own kind”. The irony.

    And then with this post you illustrate that it’s just PEOPLE, none of whom are completely ABLE, that would be ridiculous. Which is not something we think about every day…

    Not sure this makes sense, and pls. excuse the overuse of quote marks, but … what I mean is, thanks, and this was a very clever idea.

  12. This makes me think of an article I read some years ago (don’t remember where) by I think it was a kindergarten teacher who happened to be working with a class of predominantly middle-class 5 year old kids, many of whom happened to live in apartment buildings in a middle class part of their city. At the start of the year, this teacher discovered that a lot of the kids just didn’t know how to climb stairs — a skill that most 5 year olds have mastered. Apparently they were too accustomed to taking the elevator or perhaps escalators. So she ended up doing a few practice sessions with these children to help them learn how to navigate stairs at their school. In the article, the author speculated that if these had been poor children from an impoverished neighborhood, all this would have been pathologized in some way — the children would have been presumed to be lacking the basic skill of stair climbing due to their “deprived” background and therefore in need of “remediation training” or some such thing. But because it was a class of mostly middle class kids, there weren’t all these labels involved, it was just, “Oh, they haven’t got this skill yet, let’s work on this.”

    (DISCLAIMER: I read this YEARS ago. I’m probably mis-remembering or fuzzing over a lot of key details. But this should be the general gist, at least in spirit and tone.)

  13. “Childhood largely consists of having your abilities developed, mostly through the efforts of adults. However when a disability is involved, recreational activities like horseback riding or art become medicalized.”

    Don’t forget the money! It’s easier to argue for someone else (health insurance, school system, whatever) paying for your kid’s horseback riding or art lessons when they’re called “therapy” than when they’re called “hobbies.”

  14. Brilliant!
    This reminds me of my own experiences as the visually-impaired guy in my school.
    See, primarily due to the fact that I WAS visually-impaired, I wasn’t very good at gym class (“softballs” are actually pretty goddamn hard!)
    This caused me not to have very much in common with my “classmates”, who were usually much more “athletic” in the typical sense, than I was. Add to this various other aspects of my (mis)education which I won’t discuss here, and I pretty much had nothing in common with any of them, other than the fact that I was forced to attend the same public school.

    So, one of the things they really liked to do was beat the hell out of me, nearly every day. Now, if a ‘normal’ kid fights back against being bullied, then it’s just considered that — fighting back against the bastards who are bullying you.

    HOWEVER, in my case (primarily due to the fact that my school had created an IEP for me, and could conveniently explain everything in terms of my visual problem alone), I was declared to be “acting out”, and fairly extensively subjected to the school shrink.

    If you’re not “normal”, then those in power can — and usually will — dismiss you out of hand, and one of their most successful ways of doing this is to view every aspect of you as some sort of pathology related to your particular disability.

    Brilliant article, as I said.

  15. Exactly. When I go to taekwondo class, I do not call it “coordination therapy” or any such thing. It is an activity I enjoy that helps me physically develop fitness and coordination and balance.

  16. I was thinking about exactly this today. I remember reading about dyspraxic boy who was sent for “physiotherapy” while other kids had P.E. While the typical kids learned to play football, rugby and hockey, he learned to tie his shoelaces, walk in a straight line, climb stairs and sit on a chair without falling off. I had similar “therapy”. Granted, these are at a lower skill-level. However, I remember a French class where I could conjugate verbs with complete ease and the girl sitting next to me asking me “What’s a verb?”. Was I a “linguistic therapist” for teeling her? The fact that someone has a lower level of skill doesn’t mean that teaching them to do something is a medical treatment.

    I’d like to add that I don’t make this comment as an attack on any particular physiotherapist and I’m extremely grateful to the physiotherapists for everything they’ve taught me. I am certainly NOT suggesting that their profession shouldn’t exist – they’ve taught me so much that I’m grateful to know. The things they taught me and the methods they used to teach them were too different from “normal” physical education to have been taught by a “normal” P.E teacher (although I think if ANY type of human being should be excluded from the ranks of “normal” humanity, it should be P.E teachers). There should be people specially trained to teach movement people with co-ordination disorders, people who have had illness or injuries that cause physical impairments and anyone else who has more than usual movement difficulty how to move, just as there are people specially trained in teaching dyslexics to read and spell, teaching people with speech disorders to speak, teaching blind people to read braille etc. But people who teach people to do things should be called teachers or tutors or educators or something along those lines. They should not be called therapists.

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