Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights from my own experiences as a person with disabilities and (more recently) disability rights activist. I also have a BS in psychology, with a concentration in cognitive and neuro psych.

Since graduation, I have worked as a psychology research assistant and as a caretaker for children with assorted developmental disabilities.

I am currently in the process of further editing this blog to ensure the privacy of everyone I mention in it. I am saddened to have to omit and change some details, as I greatly enjoy accurate descriptions, but with this blog slowly gaining more attention, I want to be certain that I do not violate the trust that families and friends have shown me in sharing their stories and letting me spend time with their wonderful children.

When ABA Gets It Right: Collaborating with a Client

November 24, 2014 Leave a comment

There’s one ABA team I work with who are, on the whole, pretty awesome. I’d like to give a few examples of things that make me happy about them:

- They acknowledge, in front of the client, that they know she understands a lot more than she is capable of expressing to us. They say things like “she’s having a hard time answering these questions” instead of “she doesn’t know the answer.” They are courteous.

- When she gets frustrated with a task, they don’t push or insist. When the client first says “all done,” they encourage “try again,” but if the client then says “no” or “you do it,” they respect her choice. As a result, she’s much more willing to actually try something again if she feels it is difficult but possible for her (or she wants to learn it).

- They not only allow the client to make activity choices, they also do a certain amount of power balancing, letting her direct them around and instruct them to do things. They also do a lot of the activities along with her. If she’s doing sit-ups, for example, her technician (or I) will do them as well. It’s not just an adult giving orders and a child being expected to follow them.

***

Here’s a story from last week that made me smile. It was an exciting day for the client– she had me, her ABA supervisor, and a new ABA tech all working with her. This is a very social pre-teen with multiple disabilities. She prefers communicating verbally, but has a fairly severe speech impediment. At best, her family understands maybe half of what she says– and less just recently, because she’s started using a lot more words and full sentences, which is very awesome but harder for us listeners to decipher.

We’re trying a relatively new activity– playing a matching game with cards, taking turns around the table. The client is obviously unenthusiastic at the sight of the cards. She gets the idea of putting them together in pairs, but doesn’t quite seem to understand the matching criteria. We each take two turns, and she has on her frustrated expression by the second one.

“I’m not sure this activity is going to work for her,” the therapist admits. We briefly talk about what might be wrong– perhaps the symbols on the card are too similar for her to distinguish easily, or too close together for her to count (she has some difficulty with visual tracking). Maybe “Go Fish” would be worth trying instead. In the meantime, we ease back to simply taking turns placing the cards on top of one another, which the client might find a little boring but at least not frustrating.

Near the end of the pile, the client says what sounds like “EEEnud.” “Did you say peanut?” we ask, baffled (there’s a lot of guessing involved when she speaks, and she’s generally very patient with us about it. Even better, she’s learning to sometimes rephrase or give other clues when we can’t figure out what she’s saying).

She tries again, and it sounds more like “eedhub.” “Eat up?” I guess, wondering if she’s hungry.

This time, she starts carefully chanting “Eenub, eenub, ebbuh-buvy…” at which point we all catch on at once and start singing with her “Clean up! Clean up! Everybody, everywhere…” (a short song that many therapists use at the end of an activity when it’s time to put away all the pieces). She’s prompting us to call it quits on this activity, so we do. And we’re all smiles, including the client.

That, my friends, is how you work WITH a child. Listen, respect feedback (verbal or behavioral), be flexible, take turns.

Breaking Down ABA, Again: Part 2: Goals and Underlying Philosophy

November 22, 2014 1 comment

[This post continues a series started here]

UNDERLYING PHILOSOPHY

One major way in which schools of ABA can differ is in their primary goal, their understanding of how ABA methods should be used.

***

1) Traditional Approach: Fighting Against Autism

Traditional ABA practitioners believe that it is inherently good for autistic children to appear, act, and communicate as “normally” (neurotypically) as possible. The gold standard here is the phrase “indistinguishable from one’s peers,” the idea that no one even has to know that this person is autistic. Many people even misunderstand this to mean that the person who attains indistinguishability has been “cured” of being autistic. That claim makes about as much sense as the notion that a person who wears a realistic wig has been cured of being bald. Sure, they may get fewer stares, but nothing about them has actually changed. And that wig might be uncomfortable enough that the person would rather not wear it.

There are innumerable studies on how to make autistic kids seem less autistic, and few (if any) on what advantages (and disadvantages!) seeming “normal” actually offers the autistic person. I won’t claim that there are no advantages– certainly, seeming normal is going to open a lot of doors in our society in terms of education, job opportunities, and social advantages. But at what cost? According to many people who have been through this therapy, the costs can outweigh the benefits by a lot (see sources list 2).

This is an area where the science is simply missing. The concept of autism as a disease or condition that needs to be cured has been so widely accepted that few researchers or other professionals have thought to challenge that fundamental assumption.

But if we look at the history of other disability rights movements, we start to see grounds for challenging the “medical model.” While many wheelchair users would like full body mobility, many others, particularly those born with their physical impairments, are very content with their life and ask only that the world be wheelchair-accessible so that they can have the same opportunities as anyone able-bodied. The majority of people born Deaf prefer to remain Deaf and use sign languages (which are complete languages, as complex and real as any spoken language, with their own culture, dialects, poetry, and so on) rather than risk partial (and painful) hearing restoration via cochlear implant (a wonderful example of what the world sounds like via implant may help non-Deaf people understand this preference).

And plenty of people make choices that others would find terribly limiting– not teaching their children multiple language, not having children at all, working in a career that is emotionally rewarding but not financially so, or the reverse, codes of dress or diet restrictions imposed by religious belief. What right, then, do we have to criticize someone’s preference for the comfort of repetitive activities? Why do we pathologize these people but not the thrill-seekers who perform dangerous stunts and participate in extreme sports?

The medical model assumes a basic “normal” state for the human body and mind, from which deviations are problematic. Closer observation of human history makes this viewpoint implausible. Genius and madness often run hand-in-hand (see Dr. Kay Jamison’s book “Touched With Fire”). People with reduced empathy are often the most successful financially (http://edition.cnn.com/2014/05/29/business/psychopath-andy-mcnab/index.html). Plenty of artistic and scientific geniuses struggled in other areas of their life, from socializing to mental health to financial management (Van Gogh and Mozart died in poverty, Einstein’s socks didn’t match, Emily Dickinson was a hermit, Ben Franklin was a womanizer… who’s “normal,” anyway?).

There are physical tradeoffs we rarely consider. Being extremely tall gives social advantages but increases the risk of heart problems. The pale skin so socially prized in many cultures around the world is an invitation to skin cancer. Sometimes we even make these choices deliberately, as when ballet dancers or boxers push their bodies to the absolute limits of human endurance, despite risking major health issues later on. We celebrate these people, but we’d also be pretty badly off if everyone in our society were an athlete or a distracted genius or a ruthless CEO. We need diversity of personality, diversity of interests, diversity of approaches to the world.

Sure, you say, but there are limits. It’s not like we actually want serial killers and people with PTSD all over the place. How do we tell when diversity is positive and when it is disruptive or undesirable? We have to look at some level of cost-benefit analysis, and I think the main relevant points to analyze regarding any condition are: Is it hurting others? and Is it making the person miserable?

Parents and professionals see autistic children struggling and assume that autism needs to be cured to alleviate that suffering. But this is often misinterpreting the actual problem, which is the mismatch between the needs of autistic people and the environments they live in. A wheelchair user isn’t going to be happy in a city full of stairs. You don’t take a bird for walks on a leash. You don’t feed dog food to a hamster. Someone with asthma might be perfectly well so long as they aren’t exposed to heavy air pollution. You don’t cure prejudice by telling the victims to stop being gay or Black or Catholic… or autistic.

But that’s exactly what traditional ABA is trying to do. Its faulty logic is: neurotypical behavior = neurotypical neurology. Standing out is bad and fitting in is good. Autistic people won’t be happy unless they learn to do the things that non-autistic people enjoy doing (such as socializing with groups of people or communicating verbally or shopping at the mall).This is the error I talked about parents making in the previous post. They want their children to be happy, of course– but they assume that the autistic person’s criteria for happiness are the same as their own.

When you start from this fundamentally flawed assumption, you are doing damage, no matter how gentle or naturalistic your methods. This school of ABA teaches “quiet hands” and “sit still” and “make eye contact.” It teaches autistic children to hide their pain and their needs, to obey without question, and to suppress their most natural ways of interacting with the world. By extension, it teaches autistic people to hate themselves. The self-hate may not surface until later, but it is an inevitable result of being taught that the way you do things naturally is always wrong.

***

2) Improvements on the Traditional Model: Autism is not the Enemy

Some more modern schools have moved beyond this, at least in part. They understand the basics of sensory needs. They argue for kids to get accommodations, allow them to stim, accept multiple forms of communication, and don’t focus primarily on suppressing autistic behavior. They do still, however, tend to set goals through a neurotypical lens, which often involves a lot of incorrect assumptions about how the autistic mind works. Ultimately, much of their work is counter-productive, although a lot less unpleasant for the child than the previous version.

An example of this is when a therapist sets the goal of having a child look up and orient towards the speaker when her name is called, so that she will attend to safety instructions like being called back before she runs into the street. The underlying goal isn’t a bad one– get the child attend to stimuli that are likely to be important for their safety– but the notion that an autistic child can reliably indicate attention by looking at the speaker needs to be re-examined.

Another example: a reasonable educational goal is set for the child, like being able to do arithmetic. But the therapist assumes that wrong answers result from a failure to understand, not from dyspraxia that leads the child to point at the wrong answer unintentionally. There are many self-reports from autistic people explaining that this is a common occurrence for them, but researchers have failed to take this into account when developing treatment protocols. The result is a lot of time wasted attempting to “teach” a child information they already know, a lot of frustration and anxiety on the part of the child, and a serious underestimation of the child’s intelligence or academic potential.

Too often, ABA practitioners in this category work at getting kids to do the wrong things for the right reasons, taking time and energy away from more important learning. Unfortunately, the vast majority of research into autism “interventions” and “treatments” is based on assumptions like these, if not the even worse traditional beliefs mentioned above.

***

3) Getting It Right: Supporting the Autistic Experience

The rare wonderful ABA folks have a philosophy more like that of most occupational therapists. They believe that their primary job is to give the child a set of tools that are useful to that child — not to make them less autistic, but to help them to function better as an autistic person. They want the child to feel empowered and competent. They use the methods of ABA to teach communication skills, self-care skills, and skills that increase a child’s independence rather than stifling it. They also focus a lot on adapting the behavior of other family members to be more supportive toward the autistic child.

A therapist in one such program said to me that the philosophy behind their sessions is “form follows function.” This means that they use, in my opinion, the appropriate interpretation of the “Analysis” part of ABA — they try to figure out what the child needs or is trying to accomplish, and then seek to teach the child an effective and reliable way of reaching that goal (a way, additionally, that doesn’t involve anyone– including the child– getting hurt or being made miserable). This same therapist told me that the very first thing they teach any child is how to ask for a break– “and then, if the kid wants to take a break 200 times in a 2 hour session, that’s fine, we let him take all those breaks. We’ll work on the rest later. The point is, he’s learned something useful.”

I’m not saying that these people are flawless– they do fall prey to some of the same erroneous assumptions about what it means for an autistic child to show progress– but most of what they do helps more than it hurts. Sadly, they are in the minority.

It can, of course, be difficult to define the line between helping a person grow and changing who they are. When are you helping a child by having high expectations for them versus pushing them to do something they truly can’t manage? How do you balance respecting a child’s needs and preferences with teaching them the necessary amount of patience, self-control, ability to face disappointment, and so on? These questions are much harder to answer empirically, and honestly, we’ll probably never have the perfect answer, especially since it’s bound to be different for every individual. But we do know that a child has to feel safe before they can focus on learning. That a child who is in pain (physical or emotional) is unable to perform at their best. And that every person, regardless of ability, needs to feel respected and heard.

 

*****

Source list 2 (in no particular order):
- “The major false premise, common to much autism research, is that autism is a “disorder” rather than a difference. When a researcher starts from that premise, they will be looking for “causes” of the “defect” rather than for an understanding of the source, function, and consequences of the difference.” – This article also notes some other specific flaws in most autism research. http://www.mfw.us/blog/2014/03/09/cart-before-the-horse-research-multisensory-integration-in-autism/#sthash.DHlX7js7.dpuf

- “I was treated with mostly kindness, but the therapists could not see beyond their training.  I learn quickly, but am not able to reply with words that sound right to another.

Worry becomes everyone’s focus.

Real learning happens when no one notices.

The goals waste away.

Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.” – 12-year-old Emma Zurcher-Long, on her experience of ABA therapy at ages 2 & 3. http://emmashopebook.com/2014/02/07/no-aba/

- “A small but growing number of multidisciplinary researchers are challenging the autistic stereotype and finding, in many cases, that our knowledge of autism has been built upon unsupportable ideas about normality, intelligence, sociality, eye contact, empathy, language development, child development, and communication.” Excellent reading here, with a lot of scientific references. Thoroughly debunks several common assumptions, including the idea that eye contact equals attention, even in neurotypicals. http://karlamclaren.com/research-based-approaches-to-autistic-ways-of-learning/

- “Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.” This source was also quoted in a previous section. https://unstrangemind.wordpress.com/2014/10/07/aba/

- “Being declared indistinguishable from peers does not do any favors to the child, except maybe ending the hours and hours of discrete trial training. Being academically “on track” does not magically confer socialization or executive function abilities….

This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of “indistinguishability” on top of that is just setting us up for burnout. “ – This is part of a wonderful series of posts about the downsides of “indistinguishability.” http://timetolisten.blogspot.com/2013/09/indistinguishable-from-peers.html

- “...even when people know eye contact can be painful and that we will not pick up much social information, we are STILL expected to perform the feat for the social comfort of others.” – Also quoted earlier. http://ollibean.com/2014/10/28/autism-and-eye-contact/#sthash.iSXIsfKU.dpuf”
– “The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.” Excellent and clear explanation, with references. http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

- “I think “compliance” is a lazy shortcut term for something more important or more measurable or more relevant. “He was compliant today.” What does that mean? That he did what he was told to do because his spirit was broken and he went through the motions? That she did what she was asked to do because she understood why she needed to do something? That he was guided toward possible options and that staff and support folks helped him reach decent decisions about what to do or not to do?” http://blog.dadsofdisability.com/compliance/#.U2qlX_ldWX9

- “I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.” Quoted many times before. http://juststimming.wordpress.com/2011/10/05/quiet-hands/

- ““It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn’t mastered because I had inaccurate pointing.  I knew everything so easily.  I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn’t know “book” or “tree”.  I did it over and over.  It was the worst.  The assumption that people don’t understand if they reply incorrectly is a huge misconception.  ABA is built on this erroneous premise.”” – Ido Kedar, quoted at http://emmashopebook.com/2013/11/05/more-on-aba/

Breaking Down ABA, Again: Part 1; Ethics, Standards, and Side-Effects

November 12, 2014 1 comment

[Read the Introduction here]

***

SOMETHING IMPORTANT IS MISSING

ABA-based therapies are currently considered the only scientifically validated “treatment” for autism in the United States. Let me defer, for the moment, discussing what is meant by “treatment” and whether or not that is an appropriate word to use.

Any medical or therapeutic treatment, particularly one used on children, should be subject to rigorous safety testing by independent researchers. To the best of my knowledge, no such research has been done. By this, I mean research that actively looks for any downsides to ABA, and follows clients up in a long-term study with a control group.

I have come across many possible side-effects to ABA (and related therapies/teaching methods), mostly reported by autistic adults and autism parents, and occasionally by professionals. Some may be evident immediately, but others are only noted many years later (perhaps the client is aware of them earlier but is unable to report until much later due to delayed language skills or the difficulty many autistic people have in recognizing and reporting emotional experiences. Also, sometimes the client has to reverse habits learned in ABA therapy before realizing how detrimental they were.)

Here is an incomplete list:

acute emotional distress; decreased self-esteem, self-hatred; depression; anxiety (particularly when being observed by others); suicidal ideation; post-traumatic stress disorder; loss of trust in others, including primary caregivers; increased aggression; reduction in or loss of “savant” skills; inability to respond appropriately to sexual assault, pressure, or predation (attributed to compliance training); difficulty judging or expressing one’s own preferences; and reduced independence. (See sources list 1).

Additionally, any treatment should be held to a set of ethical standards, established by a central organization and required by all practitioners. As autism mother and professional writer Ariane Zurcher notes, people don’t usually have reason to question whether established medical treatments (she uses the example of chemotherapy for cancer) are ethical or not. But most autistic communities have serious concerns about the ethics of ABA.

ABA practices are not standardized, are not regulated, and are open to a large amount of parental influence. This is a problem because most parents of autistic children, while in many ways the ultimate experts on their own children, are not experts on autism in certain crucial ways and make certain assumptions from their own neurotypical perspective that may seem like common sense but ultimately not be what their child needs (currently, most ABA folks also make those incorrect assumptions, but I will address that point later).

To draw a parallel, we expect a doctor to listen to a mother’s description of her child’s symptoms, but we hope that the doctor wouldn’t prescribe an inappropriate medication or dangerous procedure simply because the parents want it. And while parents may have to intervene at times in their child’s education, we don’t expect that a father should be allowed to rewrite exams or insist that the teacher add new material to the curriculum! But most ABA programs are largely centered around the parents’ goals for the child, and those goals, which are usually based on expectations for a typically developing child, are not always healthy or safe for an autistic child. There needs to be some oversight here, based (again) on thorough research.

So this is my first concern about ABA therapies: the methods are not safety-tested, and practitioners are not held to established ethical standards. Would you give your child any other “treatment” that didn’t fit those criteria?

***

Sources list 1 (very incomplete, in no particular order, and NOT EASY TO READ, i.e. lots of trigger warnings):

- Oliver Sacks, in “The Man Who Mistook his Wife For a Hat,” recounts an instance of profoundly autistic adult brothers who were mathematical savants until undergoing intensive speech therapy.

- “You’ve heard that eye contact is about sharing and social referencing and subtle messages and cues being sent among communicative partners. That’s not what this is at all! This is the sledgehammer. This is the safeword, if you will, the “this stops now it has to it has to it has to make it stop nownownownownow no matter what”.
“Where did I get this idea? Therapy. That’s where… My brain knows that for most people a straight in the eyes stare is not the signal for “something needs to stop right. now.” but it isn’t that easy. One of the deepest conditioned things I have is “eye contact is giving in. If you do that, the bad will stop.” This is irrational and untrue and the world doesn’t work that way. It’s deep, though, as the first and most consistent of the wrestling matches I had with adults as a small child.” – http://timetolisten.blogspot.com/2014/03/conditioned-eye-contact.html

- “Her internal model of friends is “I do what they tell me to do”. No one has to be nice to her, or put up with her, so she has to do what they ask. “No” isn’t an option… People ask, and she does. And when people don’t ask? She doesn’t know what to do. The guessing is impossible. Not knowing what they want is oh so anxiety provoking that she cannot breathe for hyperventilation. They can tell her they don’t want anything, but that’s never true. People always want something and the guessing game is not a thing she can do anymore.
People say they don’t want anything. They always want something. Stand up, sit down, touch nose, good girl. Do my homework for me. Social media crisis this. Can you cover another shift at work? These, she understands. “Just be my friend” doesn’t mean anything.” – http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html

- “…what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.” – https://unstrangemind.wordpress.com/2014/10/07/aba/

- “Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.” – http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

- “People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy…. There’s only so long that a person can take being pushed into sobbing meltdowns of frustration before they are willing to do whatever it takes to get the torment to stop. It is not only heart-breakingly cruel to treat a child this way, it is grossly irresponsible. Therapy like this creates problems. The best it will produce is a child trained to do things that make no sense in order to avoid distress and get rewards. The worst it will produce is a child that bites, kicks, hits . . . and gets bigger and stronger along with becoming less and less controllable. This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individuality, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. ” – http://unstrangemind.wordpress.com/2014/11/07/what-does-helpful-vs-harmful-therapy-look-like/

***

[This post continues in part 2]

Breaking Down ABA, Again: Introduction

November 12, 2014 2 comments

[This post is being re-written and expanded into a series. The introduction portion is not heavily edited from the original, but the rest is.]

So here I’m going to talk, again, about ABA, about the disconnects and disagreements that I see whenever ABA is discussed online in autism-related communities, and about my own thoughts on ABA as a scientist.

I am going to ask that commenters be sensitive to the fact that many autistic people have been deeply traumatized by undergoing an experience that was called “ABA therapy.” Whether or not that was “correct” or “real” ABA, whether or not ABA has changed since then, whether or not you’ve ever witnessed the methods that were used on these people, please be respectful of that fact that for many people, the term “ABA” is very distressing.

***

INTRODUCTION

I see an often-repeated pattern in online discussions about ABA. It goes something like this:

  1. Someone mentions ABA.
  2. Autistic self-advocates and some parents jump in to say that ABA is terrifying, problematic, unethical, and so on. Terms are used like “child abuse” and “psychological torture” and “deeply traumatizing.” Most of these people speak from personal experience.
  3. Many other parents and professionals jump in to defend ABA. They also speak from experience. They point out how much ABA has changed since the early days, or document the incredible progress they’ve seen in their children and clients. Many are deeply offended by the idea that what they are doing to their children could possibly be hurtful.

So I want to write about what I think is going on here.

Note: I’m not going spend much time on the origins of ABA therapy, because that’s a bit like judging modern psychotherapy by only discussing Freud. While there are still plenty of places that practice pure Lovaas-style ABA (or worse), those aren’t usually the people who participate in these discussions.

I’m also not going to try to define ABA. I assume the reader has a working knowledge of at least some form of therapy that falls under the ABA category (though I will ask readers to remember that many different practices currently go by the name “ABA”). What I am going to do is talk about individual aspects of many of those therapies, and try to tease part the good from the bad.

 

[This post continues in here]

In the Wake of Tragedy

November 8, 2014 Leave a comment

There isn’t much I can say right now. Another name– London McCabe– has been added to the grim list of autistic children– autistic PEOPLE– murdered by their parents. He was 6 years old.

To all the autism parents out there:

If you ever feel that you are at risk of hurting your child, please, please, PLEASE reach out. Call a friend. Call 911. Call child protective services. Call any church or other religious center. Call a random number you pick out of the phone book. And ask for help. In fact, do anything at all except killing your child, because believe me, no decision you could make is worse than that.

I wish I had the resources to make this promise right now, but I don’t, so I will work towards it:

I want there to be an autism parent hotline. A number you can call, any time of the day or night — if you are too scared, if you can’t take it any more, if you are in despair, if you have lost hope — and someone will come to your house, with no judgement and no requirements, and take your autistic child somewhere safe until you are ok again.

I wish with all my heart that someone had dragged me from my bed in the middle of the night and placed that beautiful little boy into my arms. Because, no matter what it cost me, I would have loved him and cherished him and protected him and cared for him until he had a safe home to return to.

Never Again. It isn’t a slogan, it’s a plea. Please, please, please, everyone out there who knows an autistic child, who knows a struggling family, who knows a depressed and frightened parent– reach out. Speak up. Offer your time, your love, a shoulder to cry on, an hour of babysitting, a bedside vigil, anything you can give, ANYTHING that will bring us closer to a world where this never happens again.

[Update: good lists of emergency resources here: http://tool-kit-autistic-alternative.blogspot.com/2013/09/emergency-information-autism-resources.html and here: http://www.childmind.org/en/press/brainstorm/resources-autism-parents-crisis%5D

Breaking Down ABA

November 6, 2014 1 comment

So here I’m going to talk, again, about ABA, and about the disconnects and disagreements that I see whenever ABA is discussed online in autism-related communities.

I am going to ask that commenters be sensitive to the fact that many autistic people have been deeply traumatized by undergoing an experience that was called “ABA therapy.” Whether or not that was “correct” or “real” ABA, whether or not ABA has changed since then, whether or not you’ve ever witnessed the methods that were used on these people, please be respectful of that fact that for many people, the term “ABA” alone is enough to trigger deep fear and even symptoms of Post-Traumatic Stress Disorder (PTSD).

***

INTRODUCTION

I see an often-repeated pattern in online discussions about ABA. It goes something like this:

  1. Someone mentions ABA.
  2. Autistic self-advocates and some parents jump in to say that ABA is terrifying, problematic, unethical, and so on. Terms are used like “child abuse” and “psychological torture” and “deeply traumatizing.” Most of these people speak from personal experience.
  3. Many other parents and professionals jump in to defend ABA. They also speak from experience. They point out how much ABA has changed since the early days, or document the incredible progress they’ve seen in their children and clients. Many are deeply offended by the idea that what they are doing to their children could possibly be hurtful.

So let me talk a little bit about what I think is going on here.

Note: I’m not going to go into the origins of ABA therapy, because that’s a bit like judging modern psychotherapy by only reading Freud. While there are still plenty of places that practice pure Lovaas-style ABA (or worse), those aren’t the people who participate in these discussions. The people I described above are talking about modernized ABA, which doesn’t involve deliberate aversives and has often addressed many other major criticisms as well.

I’m also not going to try to define ABA. I assume the reader has a working knowledge of at least some form of therapy that falls under the ABA category (though I will ask readers to remember that many different practices currently go by the name “ABA”). What I am going to do is talk about individual aspects of many of those therapies, and try to tease part the good from the bad.

***

UNDERLYING PHILOSOPHY

One major way in which schools of ABA can differ is in their primary goal.

Traditional ABA practitioners believe that it is inherently good for autistic children to appear, act, and communicate as “normally” (neurotypically) as possible. When you start from this fundamentally flawed assumption, no real good can come of it, no matter how gentle or naturalistic your methods. This school of ABA teaches “quiet hands” and “sit still” and “make eye contact.” It teaches autistic children to hide their pain and their needs, to obey without question, and to suppress their most natural ways of interacting with the world. By extension, it teaches autistic people to hate themselves. The self-hate may not surface until later, but it is an inevitable result of being taught that the way you do things naturally is always wrong.

Some more modern schools have moved beyond this, at least in part. They understand the basics of sensory needs. They argue for kids to get accommodations, allow them to stim, accept multiple forms of communication, and don’t focus primarily on suppressing autistic behavior. They do still, however, tend to set goals through a neurotypical lens, which often involves a lot of incorrect assumptions about how the autistic mind works. Ultimately, much of their work is counter-productive, although a lot less unpleasant for the child than the previous version.

An example of this is when a therapist sets the goal of having a child look up and orient towards the speaker when her name is called, so that she will attend to safety instructions like being called back before she runs into the street. The underlying goal isn’t a bad one– get the child attend to stimuli that are likely to be important for their safety– but the notion that an autistic child can reliably indicate attention by looking at the speaker may need to be re-examined. Too often, these practitioners work at getting kids to do the wrong things for the right reasons, taking time and energy away from more important learning. Unfortunately, the vast majority of research into autism “interventions” and “treatments” is based on assumptions like these, if not the even worse traditional beliefs mentioned above.

The rare wonderful ABA folks have a philosophy more like that of most occupational therapists. They believe that their primary job is to give the child a set of tools that are useful to that child. They use the methods of ABA to teach communication skills, self-care skills, and skills that increase a child’s independence rather than stifling it.

A therapist in one such program said to me that the philosophy behind their sessions is “form follows function.” This means that they use, in my opinion, the appropriate interpretation of the “Analysis” part of ABA — they try to figure out what the child is trying to accomplish, and then seek to teach the child an effective and reliable way of reaching that goal. This same therapist told me that the very first thing they teach any child is how to ask for a break– “and then, if the kid wants to take a break 200 times in a 2 hour session, that’s fine, we let him take all those breaks. We’ll work on the rest later.” I’m not saying that these people are flawless– they do fall prey to some of the same erroneous assumptions about what it means for an autistic child to show progress– but most of what they do helps more than it hurts. Sadly, they are in the minority.

METHODS

ABA is based on the principles of operant conditioning, which makes more sense for teaching some things than others. Breaking a task down into little steps and rewarding increasingly good approximations of the goal is a fine way to teach someone to get dressed or even acquire basic table manners. It’s probably not a good way to teach someone to speak, and it’s definitely not a good way to teach someone to make friends.

Good ABA programs don’t assume that everything should be done via ABA.

One thing that’s missing from a lot of ABA programs is the presumption of competence. Again, there are the rare exceptions, like the therapist who tells the family “assume that your child can understand everything you say within their hearing.” But one fundamental drawback to the method is that ability is indicated by action. Because it’s a data-driven method, practitioners have to fill that page with marks and numbers indicating what skills the child has demonstrated.

Again, for some things, that makes sense. You prove you can tie your shoes by tying your shoes. You may prove you’ve learned a social skill by tapping someone on the shoulder to get their attention rather than punching them in the face. But when you assume someone doesn’t understand a word because they don’t repeat it, or can’t do math because they don’t point to the right answer, you run into problems, especially in autism, where dyspraxias and other mind-body disconnects are common.

ABA and its data-tracking can have good uses. The sensitive technician knows that when a child starts giving fewer correct answers, he’s getting bored with this game and it’s time to move on to a new activity. Paying attention to numbers can reveal important information– if your kid can do math in the living room better than in the classroom, there’s an important environmental factor to uncover. If he points to the right answer but says the wrong one, this might indicate a difficulty with intentional speech and a reason to move away from verbal communication.

***

This post is a lot clumsier and more preliminary than I had hoped, but I’m going to post it now and perhaps try to rewrite it later. I hope it at least gives some insight into why I 1) am not entirely against ABA as a potentially useful methodology and 2) object strongly certain ABA practices even when they are done in a gentle and pleasant manner.

*****
Relevant Reading
http://emmashopebook.com/2014/02/07/no-aba/ (comments included)

http://karlamclaren.com/research-based-approaches-to-autistic-ways-of-learning/

https://unstrangemind.wordpress.com/2014/10/07/aba/

http://ollibean.com/2014/10/28/autism-and-eye-contact/

http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html

http://blog.dadsofdisability.com/compliance/#.U2qlX_ldWX9

Managing Challenging Behaviors in Neurotypicals

October 29, 2014 4 comments

[This is a long overdue repost from my old blog. It is both satire and very serious.It is satire in that it is very closely modeled on actual articles I see frequently online, and it borrows much of the tone and phrasing of those articles. It is serious in that I very much hope it will make the people who write, read, and share those articles think a little more deeply about what it feels like to be one of the people that those articles are about. It is also serious in that it is legitimate and honest advice for autistic people who find the actions of non-autistic people stressful and exhausting– as most of us do at times. We,  as much as anyone else, deserve to have that stress and frustration openly acknowledged. But I also hope that by turning the spotlight back on the majority, I can make them a little more aware that even their gentlest and most loving advice can feel very uncomfortable to those being singled out as the cause of that frustration.]

***

Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly.

Challenging behaviors in adults include insistence that others make eye contact or physical contact with them frequently, difficulty understanding non-speech communication beyond certain stereotyped facial expressions, difficulty tolerating stimming and echolalia, narrow perceptions of what constitutes “learning,” “empathy,” and “age-appropriate behavior,” inability to recognize the sensory needs of others, and obsession with social rituals.

How to positively address challenging behaviors in your friends and family members:

1) Gently remind them that their ways of communicating, learning, succeeding, and socializing are not the only ones.

2) Regularly let them know (preferably in carefully chosen verbal or written words—remember, they respond best to “polite” requests) when their behaviors are impeding your sensory processing, communication, de-stressing, executive functioning, and other important aspects of your life.

3) Be willing to repeat this information for them as needed. Remember, very few neurotypicals have the precise memories many of us take for granted.

4) Be patient and understanding. It can be hard for neurotypicals to grasp the importance of special interests, the joys of sensory play, or the irrelevance of their social games and hierarchies.

5) Remember to love your neurotypicals, and focus on their good points. At the same time, practice self-care. While your loved ones never mean to be a burden, dealing with them alone for long periods of time can be exhausting and stressful. Remember to take time for yourself, be firm about your own needs, and recruit a good support network to help you manage the challenges that neurotypicals bring into your life.

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