AN OPEN LETTER TO FAMILIES
CONSIDERING INTENSIVE BEHAVIORAL THERAPY
THEIR CHILD WITH AUTISM
Courtesy of Virgynia King and Bob King at GraphicTruth on Reddit, send a private message.
This letter first appeared on the Children Injured By Restraint and Aversives support website.
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
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
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
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
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
+ 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
+ "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
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
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
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
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 responds to the ABA expert.
One of these ABA "therapists" finally realized the irreparable harm she was doing to children, and wrote Why I Left ABA.
If this story is true, Applied Behavior Analysis is a cult.
Ballastexistenz Thoughtful and passionate blog about autism and disability.
Resources by and for autistic-spectrum people. Don't fall for disempowering bullshit from Auti$m $peaks - come here and speak for yourself.
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