AN OPEN LETTER TO FAMILIES
CONSIDERING INTENSIVE BEHAVIORAL THERAPY
FOR THEIR CHILD WITH AUTISM

Courtesy of Virgynia King and Graphic Truth.
You may write to Virgynia at virgynia at wampi dot org.

This letter first appeared on the Children Injured By Restraint and Aversives support website.


Dear Parents:

If you are considering an in-home (or out of home) Applied Behavioral Analysis (ABA) program for your very much loved autistic son or daughter, please consider the following.

Our son was a very loving and trusting little boy. He was joyful, easy going, and only cried if he got a significant bump from falling. We felt very fortunate since our son was mildly autistic, has a little language, and especially because he was never violent or aggressive or anxiety-ridden. He loved meeting people and we referred to him as an "extrovert."

We are now victims of a nationally-known and high visibility ABA program provider. The ABA trainers sent to our home appeared very competent. They had supervisory responsibilities. They trained others within their organization. But over the course of a year's treatment they deprived our son of needed developmental experiences. This treatment culminated when they destroyed his emotional and psychological health in a 25 minute intervention involving forced restraint and yelling while he cried and attempted to free himself. Our gentle son was very skillfully and purposefully pushed into unbearable and unmanageable anxiety.

Our son now carries a dual diagnosis: autism and POST-TRAUMATIC STRESS DISORDER (PTSD).

It is not a mild variation of the disorder he is plagued with. It is of the severe type that most of us have seen displayed by war veterans or rape victims. This is usually the case when people with psychological disabilities are traumatized. Post-traumatic stress is much more severe, disabling and persistent with this population. Within 24 hours of his final "treatment" our son became unpredictably violent. He is now anxiety filled from day to night and cries frequently. He has flashbacks, intrusive memories, and nightmares. This formerly easygoing boy of four is now constantly fearful, easily startled, and lashes out automatically and defensively. His basic trust has been destroyed and he strongly avoids most people. In addition, he cannot even go near any educational materials or manipulatives (building blocks, etc.) without severe panic, since these were used in his behavioral program. These symptoms have proven to be very resilient despite our efforts to overcome them. We feel as if we lost our son that horrible day, to a program that on paper claims to use "positive practices" and "no aversives."

Parents, consider and research non-behavioral methods such as play therapy! The "recovery" we were promised for our son turned out to be an experimental, operationally defined term in the behavioral language. It is not really what we were led to believe by these ABA promoters, who are still experimenting on children.

ETHICAL VIOLATIONS OF PARENTS' RIGHT TO KNOW

Look for these ethical violations if you are or become involved with a behavioral program. The code numbers are taken from the American Psychological Association Ethical Principles of Psychologists and Code of Conduct.

1. The therapist states or insinuates that your child will/may "recover"using their method, without explaining the narrow definition of the term "recover" that was used in the 1987 Lovaas study on which they may be basing their statement and claims.

3.03 Avoidance of False or Deceptive Statements
Psychologists do not make public statements that are false, deceptive, misleading or fraudulent either because of what they state, convey, suggest, or because of what they omit.

2. The therapist does not give you the opportunity for INFORMED CONSENT.

4.02 Informed Consent to Therapy
Psychologists obtain appropriate informed consent...the person has been informed of significant information concerning the procedure (and)...has freely and without undue influence expressed consent and...consent has been appropriately documented. Anxiety disorders are just part and parcel of autism, common and unremarkable (there was no discussion of how this type of treatment may actually create an anxiety disorder in a child who does not already have one).

Our commentary: Informed consent should naturally consist of a risk/benefit analysis. We were not informed of any risks to this treatment, nor were the specific behavioral interventions to be employed named, described, or explained. On the contrary, every effort was made to avoid giving such significant information. The therapists avoided direct questions, said there wasn't time to explain, indirectly answered the questions, quickly changed the subject or simply shrugged their shoulders. We were given vague, non-scientific euphemisms for interventions and their results, such as "keeping him in his seat" (for physical restraint), "tantrums" (when he tried to convey his distress), and "He'll get over it." (when he began to show symptoms of PTSD). Even though we both have graduate degrees, the process of informing us was given at a 6th grade level.

In addition, efforts were made to get the objecting parent out of the therapy room, to further obscure informed consent. The objecting parent was verbally attacked and accused of self-interest, incompetence, and "getting in the way of the child's `recovery'." When his mother objected to her child's crying and when he was well over his head in anxiety, she was rudely and aggressively shouted at "not to interrupt the intervention!" Coercive persuasion was the hallmark of the particular program that harmed our son. We, as parents, were disregarded, talked over, talked down, ignored, corrected and directly insulted. The coercion was particularly strong when attempts were made to stop a demonstration of behavior modification that was doing obvious harm. Role reversal was also apparent such that we were talked to as if we were employees of this service providing organization rather than the reverse.

Restraint (e.g. demanding that the child stay in the seat no matter how much he tantrums) and its close interconnectedness to aversives were not described by the therapists. Restraint is probably the most dangerous thing that will be done to your child in the course of this therapy, and is what seriously injured our son. Later we found out that risks and "side effects" are common knowledge in the behaviorist community, but not at all in the parent community. The term "regression" was never spoken to us beforehand, and yet we were told later by a well-known professional in the behavioral field that it is common for children with autism to regress in ABA programs.

Rather than warn (through a process of getting our informed consent) that this type of treatment may make a child violent or anxiety-ridden, we were told:

+ If your child is not violent now, he will be later as a result of his autism.
+ If he strikes out "for no reason" you should have a neurological test done on him. (This sounds reasonable on the surface, but the context in which it was said and the defensiveness in the tone of voice belied what we now believe to be avoidance of attribution-- that is, an attempt to obscure the obvious reason for the child's actions.)
+ "Anxiety Disorder" is just part and parcel of autism, common and unremarkable. (There was no discussion of how this type of behavior modification program may be a potent trigger of anxiety in a child who is so vulnerable.)

3. The therapist purposively and without hesitation violates the generally accepted basic underpinnings of healthy child development and common sense.

1.04 Boundaries of competence
Psychologists provide services, teach, or conduct research in new areas or invoking new techniques only after first undertaking appropriate study, training, supervision, and/or consultation from persons who are competent in those areas or techniques.

Our commentary: We, as parents and as trained professionals in child development and psychology, posit that many in the behavioral establishment are unqualified to treat children with autism due to their lack of knowledge and training in human oriented disciplines, as opposed to the study of basic reflexes and animal behavior. Behaviorism's dangerous philosophical underpinnings still do not accord significant respect for the individual or recognize the sensitivity of people with disabilities, let alone the value and worth of every child's attempts to make sense of his or her world. Behaviorism does not respect the right of a child to express creative solutions to his world, despite the fact that this is the basis of his future ability to cope with novel situations and to carry that basic sense of security and self-confidence that is required of us all to become self-sufficient.

VIOLATIONS OF THE CHILD'S EMOTIONAL DEVELOPMENT

We found that the most dangerous outcome of the philosophical directives of behaviorism is violence to the sanctity of an individual's right to protect himself. This is what destroyed our child: he was denied the basic right to defend himself against unbearable anxiety. When he needed to get out of a situation he could neither understand nor bear, he was forcibly restrained and we were told, "All we're asking him to do is sit in a chair." His world was denied validation and treated as if it did not exist. His cries for help were ignored; "extinction" is the term. What was "extinguished" was not an isolated "tantrum" behavior but in fact our son's basic sense of security and safety, his ability to regulate his emotional system, and his understanding of moral behavior (i.e. that "when I'm hurting adults will help me").

Behaviorists deny the safety and importance of your child's emotions and treat them accordingly. For instance, when his mother objected to an intervention being described at a workshop, on the basis that our child would not understand the instructions being given him, she was told that "he will eventually." This is an answer that was of course inappropriate from the view of psychodynamic psychology or mainstream developmental psychology. The very nature of setting up a discrete trial training situation left our child crying and emotionally upset, due to the fact that everything our child was doing was constantly removed from the table and restarted. Blocks were his favorite toys, and he had always experienced great pleasure in mastery of them, so the constant interruption and dismantling of this play was experienced as extremely punitive. How could he be asked to demonstrate and enjoy his mastery, when someone else was taking control of the entire situation? We believe our son experienced this situation as "mystification," a term used by R.D. Laing to mean a confusion between inner and outer realities which requires a denial of one's own emotions. All our child's emotional reactions became reduced to one parameter: compliance or non-compliance, total willessness or tantrum behavior. The effect of such a reduction on a person's autonomy and initiative can be very negative. In this and similar ways our son's current level of damage, which is very severe, was preceded by less apparent levels of damage to his self-confidence and initiative.

It is well known among professionals who treat child abuse in families that one of the primary causes of child abuse is inappropriate developmental expectations. However, we were told more than once by the organization providing our son's behavioral treatment program that the goal was to get our son to act his chronological age. Therefore there would be implicit negative consequences (punishment) for being oneself -- that is, acting one's developmental age, which is like a biological imperative. The child must be his developmental age in order to maintain synchrony with his own emotions and understandings. Hence, insistence on things like "asking politely" (which couldn't possibly be understood by a child who is developmentally 18 months old, though chronologically 48 months old) becomes an inappropriate developmental expectation.

We believe it to be particularly destructive of a child's emotional development that hugs and kisses, gestures we normally use to express affection and love, are used instrumentally in many behavioral programs. The child is required to give and to receive these gestures as part of the training, without regard to his or her actual feelings. These "behaviors" will therefore come to have a different meaning for your child. Your child may develop obsessive-compulsive behavior in this area if he or she is in an ABA program that is similar to the one we had, since the meaning of a behavior comes out of the context it is most used in. Hugs and kisses, in the program we had, meant "I surrender (my project of autonomy, my understanding of my pain, my resistance to your will, my attempt to obtain freedom to pursue my intrinsic interest in this toy or manipulative)." They meant "I seek safety in this behavior" of performing the required hugs and kisses, because "I have learned that then the pain will stop (and so will my right to choose who will receive my affections)." Therefore one can no longer expect these "behaviors" to embody true expressions of love or affection given in freedom.

NEGATIVE IMPACTS OF OTHER BEHAVIORAL TECHNIQUES

During the course of our child's treatment, we noticed a number of other negative side effects to standard components of this ABA program:

1. Problematic Use of Primary Reinforcers
Our ABA program used basic and necessary components of everyday life as "primary reinforcers" for the therapy sessions, thereby confusing their meaning in their natural setting. For example, our child did not make a distinction between therapy sessions and eating with the family at the dinner table. Though he was proficient at feeding himself, when he became accustomed to having permission to eat in discrete trials, and to being fed as a reinforcer for "correct" behavior, he stopped his initiative at the dinner table. (We in turn stopped the use of primary reinforcers.) In its insistence on using eating as a reward, this program even took food out of children's mouths. We posit that the use of food in a way that makes it a conditional reward further compromises basic trust for the child and sets up the conditions for the development of eating disorders.

2. Emphasis on Parts vs. Wholes (e.g. flash cards vs. books)
Prior to the year we spent on our ABA program, our son had much interest in books and I would read to him a lot. After a short period of time doing the program, he lost interest in books and seemed to focus on one page as the task. He seemed to have lost his previous understanding of the flow of a book, which is not surprising since he was constantly drilled on meaningless parts of pages and on flash cards, in isolation from story lines.

3. Lack of Attention to the Development of Spontaneous Speech
We observed this ABA program's strong block to the development of spontaneous speech. Since most of the time was so totally structured, our child did not have time to think creatively and was not allowed to pursue his own interests. During the year we did discrete trial training, he did not use any of the speech he was trained in spontaneously. In fact, all his spontaneous speech and new speech came solely from interactions with us, his parents. New speech arose particularly from situations of play, when he was desiring fun, exploration, and novelty. Play therapy and speech therapy therefore appear much more efficacious than ABA, and are not dangerous. ABA did nothing but demonstrate a splinter skill: the ability to memorize words. Our child could do this before ABA.

4. Use of Restraint; Development of Anxiety
We observed the trainers sent to us use the chair in a punitive fashion. If our son was angry or did something they did not like, one of them stated, "O.K., back in the seat! Make him work!" This situation of being restrained or "in bondage" in the seat, in the sense that the child has no freedom of action and may even be in pain, is extremely anxiety-arousing and is exacerbated by the fact that the person in control of the child is a complete stranger. Even if there is a supposed safety valve (such as in the beginning months of ABA, when only 3 minutes in the seat is required at one time), when the situation is overwhelming and poorly understood anxiety can be cumulative over time. The body does not recognize distinctions such as "now I am out of the chair and I can completely relax and feel safe," and even when the child is out of the situation there can be residual pain, anxiety, and alarm from being repeatedly controlled, restrained, and manipulated.

5. Repercussions of "Extinction"
We have come to believe that the attempt to eliminate a targeted "behavior" by responding to it in a discouraging way (or not responding at all) is very dangerous. Keep in mind that what is being extinguished is not simply "a behavior": when this occurs with human beings, as opposed to the animal studies where the term originated, the process is much more complex. What is suppressed is "a choice," and that implies a deep internal restructuring of the child's understanding. If the behavior to be extinguished was his way of communicating distress, he may learn that he should not seek comfort when he hurts. He may learn that he should hide pain and somatize it (e.g. develop other symptoms such as stomach aches). He may conclude he is not loved. He might even become so alarmed that he develops symptoms of PTSD as our son did.

6. Significance of Regression Discounted
After the damage to our child, we were told by a well-known behaviorist that such total regression is common in children with autism. Yet the psychological texts we have seen find sudden major regression normally present in only a rare subtype of children with Pervasive Developmental Disorder, Rett's Syndrome. Could it be that sudden major regression is common in ABA programs rather than common in autism? We find this premise to be consistent with our training in depth psychology. According to Sigmund Freud, regression takes place in the face of acute trauma and overwhelming anxiety. We posit that behavioral modification can be a springboard to many serious maladies and maladjustments.

7. Sanctity of Home Violated
We believe that one of the primary reasons our son's PTSD is so severe and so persistent is that the assault on his body, in the form of restraint that was painful and terrifying, took place in the sanctity of his own home. Home is the place that must be safe, that must be the place of rest where we let down our guard, and must be the place where we feel protected. It is a fact that some of the most severe cases of PTSD occur when the assault took place in the victim's own home, because where there exists a deep expectation of safety it is most traumatic to have it suddenly violated.

8. Emotional Responses Dismissed
Calling all negative reactions "tantrums" is a dangerous reductionism which succeeds in lumping together all valid emotional reactions, totalizing them in one word, and prescribing extinction. We suppose that it could be said that our child was having a "tantrum" as his inner emotional system and autonomic nervous system were being torn apart.

Parents, we are writing this open letter so that you will have more information than we did on possible negative effects of ABA programs, of which we had been told nothing. We hope you will make a more informed decision after hearing the "other side."

May God Bless You.

This letter first appeared on the Children Injured By Restraint and Aversives support website.

Go to part 2 of the Open Letter
Read other parents' testimonies delineating the dangers of an ABA program.
We have had email from a prominent ABA expert, who says that if this report is accurate, the therapists drastically misapplied the program; it is not supposed to be like this, according to him. Commentary by Bob King.
Amanda Baggs of autistics.org responds to the ABA expert.
If this story is true, Applied Behavior Analysis is a cult.

autistics.org Resources by and for autistic-spectrum people.

Ballastexistenz Thoughtful and passionate blog about autism and disability.


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