As most of you know, I’ve been asking people to boycott Autism Speaks and their major sponsors such as Home Depot and Toys ‘R’ Us. But I want to know in such matters that I’m making the right stand. As a rule I try to always entertain the possibility that I’m wrong and listen to opposing views with an open mind. But on something like this I feel I need to do a bit more due diligence so in my spare time I’ve been reading through the Autism Speaks web site and materials. Tonight I downloaded a couple of their toolkits. Sadly, I found nothing to dispel my negative views of that organization. To the contrary, the “toolkits” reveal the extent to which the organization’s bias is ingrained. After reading, I’m even more concerned for the welfare of autistics under their treatment than I was before.
Applied Behavior Analysis – A Parent’s Guide
This screen shot is from Applied Behavior Analysis – A Parent’s Guide. Discrete Trial Learning is the first therapy listed in the toolkit. It is described as “intensive learning” and “drill” in which behaviors are reinforced through repetition. Several examples are provided of the behaviors that are trained using this method and first on that list is eye contact. The description then provides a specific example of how the training might be applied, again using eye contact to illustrate.
My personal experience parallels what other autistics have told me on this topic. Eye contact can be very difficult for autistics. For many of us, we are paying closest attention when we are not looking at you. If forced to make eye contact, that task requires of us so much concentration and focus that it can significantly diminish or eliminate our ability to participate in the conversation or activity.
But it is not simply a matter of diverting mental resources to the task of maintaining eye contact. Put simply, making and maintaining eye contact can cause severe discomfort to the autistic. The meaning of the phrase “to stare someone down” is to use a fixed and extended gaze to intimidate another person. Imagine the intimidation that you feel after several seconds of being stared down, especially if the person doing the staring is physically much larger than you. Now amplify that by about 10 and further imagine that it starts before the moment of eye contact, when you realize eye contact is about to happen. Now imagine being forced to repeat this over and over, without escape and with protests falling on deaf ears. Finally, make sure to imagine experiencing this not as your current self but as a young child.
Consider too that the autistic child is completely dependent for food, clothing, and shelter as well as love and reassurance on the adult administering the treatment. The adult has ultimate power to make the child comply through coercion if persuasion doesn’t work. The toolkit advises that “repetition is especially important for children who may need a great deal of practice to master a skill” which implies that the child may resist the drills. But there is no hint in the toolkit that the child’s discomfort may vary from minor to excruciating so the unsuspecting parent is likely to interpret any objections from the child as a normal part of the process. The result in my case was a serial nightmare played out over several years.
A trained therapist may understand the nuances in a child’s behavior and have some clue when this type training crosses the line from therapy into torture, but remember, this is the Parent’s Guide. Family training is mentioned in the toolkit as an aspect of the program, but it isn’t called out as being specifically required, nor are there any warnings about the dangers of practicing these techniques without such training. The only qualification required to learn and administer this behavior modification method is to be a caregiver to an autistic child. Any potential for harm is so insignificant to the authors as to not be worth mentioning in the toolkit. Why is that?
One of the criticisms of Autism Speaks is that it exists not to serve autistics but rather to serve their families. Who, exactly, benefits from the autistic child learning to look the parent in the eye? If the goal is to improve communication between the parent and child, to foster stronger bonds in that relationship, to prepare the child to communicate effectively outside the home, those could be accomplished by helping the parent adjust their expectations of eye contact in order to communicate more on the child’s terms. Not only could communication be dramatically improved, but it would spare the child considerable anxiety and emotional stress.
On the other hand, a parent is likely to find great comfort in seeing their autistic child conform to neurotypical standards of etiquette. The natural tendency to prefer “normal” behavior is reinforced through constant messages from Autism Speaks that the child’s difficulties in life stem from non-typical behavior rather than a fundamental difference in processing human communication. If the aim of the treatment is primarily to benefit the parent, then it makes perfect sense that the possibility of this type of training inflicting emotional trauma on a child might not even occur to the people advocating the methodology. The omission from the toolkit of any warning of possible harm legitimizes a certain amount of trauma to the child if the result is a greater degree of behavior modification over a shorter period.
“Doctor, I’m worried about little Johnny. I’ve been able to get him to maintain eye contact, but he cries after every session.”
“Well, that’s to be expected. We are asking him to change a behavior that he finds comfortable so naturally he will resist. He’s just testing you so be strong. Now let’s talk about this new behavior. There are any number of reasons why he may have started hitting other children…”
Although one cannot read a document such as this and reliably extrapolate from it the motives and intentions of the author, the treatment described is completely consistent with a desire to assist the parent, even to the extent that doing so causes some trauma to the child. At the same time, the treatment described is inconsistent with the stated goal of helping the child communicate better since that can be accomplished with far less trauma to the child if we simply ask the parent to adjust their own expectations and meet the child part-way.
An Introduction to Behavioral Health Treatments – A Parent’s Guide
The second toolkit I read suffers from the same parent-focused bias. The goal of this pamphlet is “to provide parents of children with ASD with an overview of in-home strategies as well as tips to teach and increase desirable behaviors and decrease behavior problems.” At least the parent-focused bias is stated explicitly.
The first section of the document is titled “Tips for increasing appropriate behavior at home.” I don’t mind so much that it reads exactly like a dog training manual because we are talking about behavior modification, after all. But I noticed what seemed to me to be a glaring inconsistency that apparently was completely unnoticed by the authors of the toolkit.
Specifically, the toolkit advises
- Find something the child really likes to use as a motivator.
- Make sure not to give out the motivator too much because doing so would dilute its effectiveness.
- Verbal praise is a great motivator.
Wait, what? If my child is so eager to please that verbal praise is a great motivator, I should withhold that verbal praise most of the time so that when I do let loose with an attaboy, it has more value? We used to say autism was caused by cold mothers. Now we’ve not only dispelled that myth, but we are advising parents to withhold praise as a behavior modification technique. What if your child responds really well to hugs? Shall we withhold those too?
Am I the only one who sees the contradiction here?
This is not to say that there are no good aspects of the toolkit. For example, “Work first to increase appropriate behavior. This often also decreases problem behavior.” Focusing on and reinforcing desired behavior is always much better than trying to suppress the undesired behavior. However, nowhere in the toolkit is it mentioned that the “problem behaviors” might have some root cause that needs to be addressed.
I say this from experience. My parents set out to correct my behaviors without realizing that the behaviors they didn’t like were caused by stress. I learned to suppress the unwanted behaviors but doing so compounded the stress. Deprived of a way to relieve that stress, I bottled it up inside until eventually I’d throw tantrum at the slightest provocation. My parents and doctors were baffled at the never-ending series of “bad behaviors” which I’d take up and they’d then subsequently train me out of. Eventually, the stress built up until I couldn’t take it anymore and the cycle began again. But to them the behavior itself was the thing that needed treatment.
That underlying problem that precipitated the behavior was irrelevant since it was my problem. The thing that impacted my parents directly was was our problem, and of course that was the behavior not the thing that caused it.
The same point of view is apparent in the toolkit. For example, four categories are described as root causes of problem behavior:
- Escaping or avoiding tasks or demands
- Getting attention from other people
- Seeking access to a favorite item or activity
- Doing the problem behavior makes the child feel good
That last bullet is exactly what I described from my childhood, but it’s worded from a non-autistic caregiver’s viewpoint. Where they say the behavior “makes the child feel good” that may include behaviors that relieve stress, in which case it really means “feel less bad.” We take away “feels good” in order to also take away “problem behavior” moving the child closer to neutral on both measures.
If in fact the child is engaging in the problem behavior not to “feel good” but in fact to feel less bad, then removing the behavior without addressing the root cause of the distress leaves the child in distress and removes the means of coping with it. The treatment fails to provide an acceptable and workable alternative coping behavior because it never considers the possibility that one might be required. It then falls to the autistic child to devise some new coping strategy. This is a child who by definition finds social interaction challenging so the chance of their next coping behavior being one that is socially acceptable is slim.
The example in the toolkit which illustrates the four categories of problem behavior is an autistic boy visiting the park with a babysitter. They encounter a loudly barking dog and the boy begins to yell. The babysitter knows he likes gum and gives him a piece, which distracts him and quiets him down. Subsequent to this incident, he begins to yell when he wants gum and the babysitter then needs to withhold the gum to disassociate gum from yelling.
As an autistic reading this passage what I see is another autistic who abruptly finds himself overstimulated and responds in a way that we don’t like but which is consistently autistic behavior. He begins to yell to communicate his distress. The first thing I’d want to do would be to deal with the overstimulation – get away from the dog. You might say that in order to function independently the child needs to be able to encounter a loud dog without freaking out. If that were the goal, then don’t completely isolate the child but instead get him to a distance where the dog’s barking is not overwhelming but at which he can experience it. If there is indeed a teaching moment in this incident, have that lesson at a less stressful distance if you expect the child to participate.
What does work in the example is the gum. It doesn’t work for me but makes sense because gum is at once tactile, olfactory, gustatory and auditory (because you can hear the chewing through bone conduction). That all of these sensations are under the boy’s control creates a feedback loop within which the boy can vary the degree of sensation received from the gum. This amplifies the boy’s focus on experiencing the gum and away from the excited dog. Although rocking, hand flapping, recitation of lists and yelling loudly all provide similar means to focus attention away from an overwhelming stimulus in order to restore mental calm, the objective of the training is to suppress these behaviors and not to deal with the internal chaos from which they arise. Any surprise that some new problem behavior might arise?
The toolkit describes the exact chain of events my parents and I traversed. The yelling is dealt with but not the root cause. There was a golden opportunity here for the babysitter to recognize that the gum helped the boy deal with overwhelming sensory stimulation by substituting a socially acceptable response – chewing gum instead of yelling. Unfortunately, not even the “expert” authors of the toolkit recognize it as such. In their scenario the gum reinforces the yelling behavior, which leads to the next round of behavior modification, the result of which is to withhold the gum. The one opportunity in the scenario to identify gum as a socially acceptable means of coping with overwhelming environmental stimuli is lost on the authors, the babysitter and the unfortunate child who later has the one thing that might have worked deliberately withheld from him.
Just like verbal praise was withheld in the example on reinforcing desired behavior.
Really? Is this the best we can do? Have we learned nothing in the last 40 years? Where is the part where the caregiver, having discovered gum’s ability to calm the boy, continues to provide it in the presence of overwhelming stimuli such as barking dogs, but also works with the child to find a better way than yelling to communicate a desire for gum?
The sad thing is that there’s enough good material in these guides that a non-autistic person, especially someone with a newly diagnosed child, would probably not pick up on the harmful aspects. And that gets to the heart of why it is so important to have autistic people fully represented in the leadership of Autism Speaks. As far as I’m concerned, the name of the organization is itself an affront to me and autistic people the world over because it isn’t autism doing the speaking.
But because of the name and the celebrity status of the organization, the public and donors believe that the organization actually does represent the interests of autistic people. It would be more accurate to say the organization represents the interests of the families of autistic people, and specifically families of that portion of the autistic population who are functionally disabled by their autism. Autism Speaks doesn’t represent families of all autistics because those autistics who could use some help but are more or less able to function in neurotypical society are not part of the Autism Speaks charter. Autism Speaks, and this is something they seem to be quite proud of, only talk about autistics who are a burden to family and society. They are perfectly willing to throw the rest of us into that basket for fund raising purposes, but otherwise fail to acknowledge that we even exist.
It is true that someone looking for evidence to support their position can always find it. A reasonable person might believe that is what’s going on here. I’m the first to admit I may have some confirmation bias but then it’s a hard-wired human trait of which autistics aren’t exempt. However, my intent in doing this research is to try to separate out the good from the bad in Autism Speaks. I do not want to kill the organization but merely see it embrace actual autistic people in its leadership and live up to the promise of its name. Making that type of change requires mapping the territory and approaching the problem with a scalpel instead of a club. I am looking for all the good I can find in that organization. Parallels to needles and haystacks come to mind.
Unfortunately, reading documents such as these two toolkits is so emotionally upsetting that I’m unable to make much headway on the research. Every time I read somethign like this, it makes me want to join the “just kill Autism Speaks and sort it out later” crowd. It will take me at least 2 or 3 weeks to regain enough objectivity and rebuild my emotional defenses sufficiently to attempt to look at more toolkits. However, I’ll continue the process because I believe that it is important to consider these materials from an autistic point of view. Of particular importance is feedback from those of us who were harmed and have sufficient communication skills to explain how and why it occurred. Because if the only perspective available comes from neurotypical doctors, working with neurotypical researchers, charged with providing relief to neurotypical parents burdened by functionally disabled and uncommunicative children, who in all of this represents those children?
My experience of autism as a child is of years of physical and emotional abuse. I can tell you first-hand that violence is a very effective means of behavior modification. The degree to which I can today hide my autism and pass for neurotypical is due in large part to the degree of trauma I experienced in the name of behavior modification. But there are far more humane methods to accomplish the same thing, though they are not as brutally efficient and may take longer.
And please do not point to my success as proof that the ends justify the means. The moment I could, I moved away from my family and left no forwarding address. My wife and I told her family to refuse calls from mine and not to give out our contact information. I became successful not because of the interventions my family practiced but in spite of them. They taught me to suppress my “inappropriate” gestures, facial and vocal tics, touching and other specific behaviors. But it was my wife who communicated with me on my terms, gave me a safe place to express my authentic self, and over the course of time brought me out into the world. My role in my own success is having identified my family as part of the problem and isolating myself from them. Beyond that I owe my success to my wife.
As a network consultant, I look at the people in the various offices where I work and I know that I could have been successful and independent despite typically autistic mannerisms. I see people like me all around me, expressing typically autistic behaviors practically every day. But I could not have become successful at that level without the ability to communicate. The interventions practiced by my parents and as described in these two toolkits have behavior modification as their only objective. They can help you suppress typically autistic behaviors but that doesn’t lead to improved communication skills. It just makes neurotypical people more comfortable around the autistic. The methodology values outward conformity to neurotypical behavior over the ability to communicate more effectively, which should be the real goal here.
Although there are undoubtedly good outcomes for many children, those appear to be incidental to Autism Speaks’ primary goal of relieving the “burden” on families. If there are controls in these methodologies to detect and mitigate harm to the children, one would hope to find them mentioned in toolkits developed for distribution to parents of newly diagnosed children. Sadly, no mention is made of any such controls and in fact the toolkits suggest that a certain amount of trauma to the children is expected in order to achieve results.
I was unable to express this as a child and I wish someone had been there to advocate on my behalf. Today’s autistic children are no more able to express this than I was. Even if they have language, they are children who are being told that how and what they think is wrong, that their expression of themselves is itself wrong. The treatment is based on getting them to doubt what they feel in their heart to be true. How could a child who experiences these techniques as severe trauma possibly express that adequately under these conditions? In the event that they try, the parents are conditioned by the program materials and the advice of experts to discount it.
But if you wait 30 years today’s children may finally be able to tell you that their experience of behavior modification felt to them like torture. Of course, by then it will be too late. Adult autistic advocates with similar experiences could tell you that today. But not if the only place you look is Autism Speaks because we aren’t welcome there.