AN OPEN LETTER TO FAMILIES
CONSIDERING INTENSIVE BEHAVIORAL THERAPY
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.
I would like to tell you more of our story of tragedy in the hope that others can be spared this pain.
Just before Christmas 1992, God graced us with a beautiful and loving son whom we had waited 11 long years to have. We named after his father. And for a wonderful two and a half years, he was the joy of our lives. Our home was constantly filled with the happy and exuberant sounds of a well-adjusted, easy-going child. I had nursed my son from infancy till he was over 18 months (being very LeLeche minded) and the mother-son bond was very strong. We described our son as very affectionate - and so, so good.
After a routine visit to our pediatrician, we were told that our son's lack of social language should be evaluated by child development expert. We couldn't believe anything was seriously wrong, since he was so happy, affectionate, and friendly with anyone he met. He enjoyed playing with his toys, and at two and a half knew the alphabet and could name the presidents on dollar bills. We thought he probably just had a language delay, so we waited a while for the evaluation.
In the summer of 1996 our three year old son was diagnosed with autism, much to our shock and disbelief. We were told to find an early intervention program that was intensive, highly structured, and of full day duration (rather than half-day) year-round. We were also given information in the written evaluation that recommended an INTRUSIVE approach to interacting with him. I was aghast. I definitely did not want to send off my vulnerable child to an all-day program at age three. I knew he was, developmentally, even younger - approximately eighteen months, we thought.
The first local contact we made with the Autism Society led us to the most local group of parents who met regularly for support. There we were told that the best thing for young autistic children was something called ABA. We were quickly connected up with another parents' group who had discrete trial/ABA programs in their homes, and they told us we had better start quickly or we would miss the neurological window for our son's "recovery." We quickly began signing up on waiting lists.
Having been given loads of pro-ABA literature, and having talked with VIP's in the Developmental Disabilities Division of the APA (American Psychological Association), we became convinced that ABA/discrete trial would give our son a chance at a normal life. We thought, "there's really not enough scientific evidence to prove this yet, but it couldn't hurt to try it." This proved to be a deadly assumption, and quickly led to what was to be the greatest tragedy of our adult lives.
When we got a provider agency and began our in-home ABA program, we were told "Your child will cry." When I asked why, I never got an answer. Being a protective type of parent with my handicapped child, I resented this and kept questioning it at the first workshop. My son did not cry, and I thought it was because he was just better adjusted than the other autistic children. This was another false assumption that kept us thinking that this can't hurt - that it can only help my child to learn how to talk.
At the second workshop my son cried. My husband was not there, but I sat in a state of disbelief and shock, with the student therapists we had hired, as I saw this "consultant" (who, by the way, was highly respected at her agency) essentially confuse, mystify, and scare my son. When my son rebelled and tried to escape, she cornered him - actually forcefully pushing/slamming him into the little chair in which he sat so well for our student therapists. She actually made the statement "You have to be more merciless." My son fell to the floor crying and as I jumped to get him, she said, "No! Leave him there or you'll teach him its OK." I thought "It IS OK. He hasn't the slightest idea what you're doing or asking." I told her, "He doesn't UNDERSTAND." She replied: "It doesn't matter - he will!"
This consultant understood that for me ABA was GONE. She told my husband (who hadn't seen what she had done) that I was a danger to my son's recovery and that it was up to him to essentially save my son. We argued for three weeks with the program on hold.......until we found out that another family was going to sue this agency, since the same consultant had left bruises on their son. We assumed that we had gotten a problem individual, not a program that would purposely abuse children. We agreed to continue the program with a different consultant.
The new consultant seemed OK. We thought a few things she did were stupid - in fact, criminally stupid - and decided not to emulate them. After all, " Catherine Maurice" had stated in her book that she did not copy everything that they did at her workshops. We scheduled our fourth workshop.
October l997 our lives were changed forever. This second consultant who was so sweet the first time (we later recognized this as the "foot-in-the -door" sales technique) and claimed that she just loved children now took the exact same posture as the first consultant. She worked on convincing my husband that I was too protective and permissive and added that, if I did not agree to what I call "coercion," she could not promise that they would continue the program for our son. My husband, feeling quite vulnerable - he desperately wanted our son to have a chance at a normal life - convinced himself and me that we should "see what she means" and allow her to demonstrate "how to keep him in the seat." He didn't realize what would happen, and I became open to the idea that there was a way to do this without being abusive. Of course this change in our thinking had come about under duress (her threats of ending the program), and we only agreed to a demonstration of the nebulous and euphemistic phrase "keep him in the seat."
Well, the last afternoon of our two-day workshop, this consultant chose to demonstrate these mysterious and unnamed interventions when my husband went out to get lunch. When i objected, she raised her voice in a threat: "You agreed to this! The subtext was: "Go along with the program or we pack up and take our magical healing curriculum with us! She then promptly ordered my out of the room so she could demonstrate these techniques to our student therapist.
Expecting my husband to return in a few minutes, I decided to let her go. Also, I was taken by such surprise that she would do this so suddenly and take such an authoritarian tone with me. I felt she had trapped me into this. I suspect I was right. I felt panicked, sick and angry. My feelings told me that this was the final straw - I didn't approve of this kind of crazy program. All I have to do is wait for my husband to walk in the door and CATCH her in the act of making him cry hysterically (which she acted like was just part of the program) and I KNEW he would want to get rid of the program. I knew he would have to see it for himself, because it was unbelievable. I couldn't unilaterally throw her out - he would have to do it with me. I felt my little son would be less harmed if he didn't see me standing there watching this thug upset him. I remained out of the room and did not see what ensued.
The next 25 minutes were filled with a cacophony of sounds that were irreconcilably divergent and horrible. My son crying terribly - the consultant almost simultaneously clapping and saying "Good boy!" My son screaming - the consultant loudly demanding that he "kiss" and "hug." My son trying desperately to escape - their clapping. My son throwing the "reinforcers" - the consultant brutally yelling at him to pick them up. Their asking him to "touch his nose and head" - him falling out of the chair and screaming "go see mummy! go see daddy! pee on the toilet!!
Every five minutes I interrupted to ask what was going on - Is he OK? I want to take him to go pee! - as I vacillated between stopping her and waiting for my husband to see it first hand. She shouted my down every time I interrupted her.
At the 25 minute mark I gave up waiting for my husband. I ran down the steps - grabbed my son while yelling "To HELL with ABA!"
I ran him upstairs in my arms and slammed the door shut, sat down on the floor with him, and held him close to me. He sat there actually perspiring in a cold sweat, limp, and stunned. It was very frightening how his body felt. However I experienced an intense relief at having gotten him to the safety of my arms. I was starting to cry from the horror of it all when my son lunged forward and started viciously biting my face with an incredible speed and ferocity. HE WAS OUT OF HIS MIND WITH TERROR.
I knew instantly that serious damage had been done to him. I lost control and started sobbing, "Oh my God! Oh my God! Mummy's sorry! Mummy's sorry!"
He was incredibly traumatized. His body was moving with such an adrenalin force that I was forced to compare it in my mind with the descriptions of persons on stimulant drugs. I had never seen a person in this state. My own horror changed to sharing my child's terror.
I was finally able to hold him - he calmed down. I kept telling him "The door's locked....the door's locked - stay here!" I hoped with a great hope that he would be OK. We left the house, abruptly ending the workshop. My parting words: "I'd rather my son be retarded than go through this! I think its abuse." She retorted, "I think what you're doing (stopping ABA) is abuse!" She was indeed a "true believer."
My son was extremely and unusually quiet and non-responsive the rest of the day. I thought he'd be OK but this did worry me. However, I didn't realize HE WAS IN A STATE OF SHOCK, the first stage of post-traumatic stress disorder.
- I didn't know that we had just lost our son's mental and emotional health. This program had just crippled our only son in 25 minutes.
He was then, and still is now NO LONGER PSYCHOLOGICALLY WHOLE - but racked with symptoms of a severe post-traumatic stress disorder. My son has flashbacks, intrusive memories, and nightmares. His response to stress is greatly impaired. He experiences emotional storms and memory fragments. As psychiatrist Henry Krystal states in his article TRAUMA AND AFFECTS, "the final common path" of traumatization is the development of overwhelming affects (emotions).
Our precious little son, the child who had once been so gentle and trusting, a pure pleasure to be with, is now frequently terrified, untrusting, defensive, and unpredictably violent. He may lash out at what appears to be a situation of negligible stress, but which - with his compromised sense of basic trust and lack of ability to cope with a new unpredictable and dangerous world - a situation that HE experiences as monumentally threatening. (And PTSD indicates permanent damage to the autonomic nervous system).
His symptomology is overwhelming for HIM as well as us. It's difficult to summarize, since it has so utterly changed his personality over night. He lost his potty training that horrible day, and other self-help skills. Some have returned after a year - the potty training never returned. He has connected asking to go to the bathroom with the trauma and so he simply CAN'T ask to go. For months, he was UNABLE TO EVEN GET CLOSE TO US - unable to receive or express affection at all! We thought we had LOST HIM.
Who is to blame?
After the trauma, I was interviewed by a reporter doing a pro-ABA article. When I told her of our trauma experience, she responded; "Of course it was the error of just a single individual, you know, I've heard just such positive things about ABA/discrete trial."
I will tell you, the consultants who did this to my son were very skilled and highly respected at their organization....and they had become so totally desensitized to children's pain, so incapable of empathy that they were now capable of the most inhuman acts of aggression and torture. (For those interested in this phenomenon, look for articles on the "STANFORD PRISON EXPERIMENT" in psychological research indexes.)
In addition, both consultants were so identical in their behavior that we are forced to conclude that the blame falls much higher. Dr. Alice Von Hildebrand, a Catholic philosopher speaking on another topic regarding the academic elite, puts it well: "....common people are not guilty of this type of stupidity. It takes a PH.D. to create REAL STUPIDITIES!"
This ABA provider claimed not to use aversives - but they did. I wonder what they consider "aversive?" As Judith Reisman pointed out in her recent expose entitled KINSEY: CRIMES AND CONSEQUENCES, scientific definitions of behavior can be used to hide even the most brutal crimes against children in the name of SCIENCE AND RESEARCH [and treatment]. According to her research, Kinsey sexually molested hundreds of children for his projects and recorded it in his publications couched in scientific mumbo-jumbo.
I AM drawing a parallel. My child acts as if he was raped. He was emotionally raped - forced to hug and kiss while he was being hurt. Also we found out his shirt was taken off. Many, including me, would consider this covert if not overt sexual abuse. He was physically molested (we found out dangerous restraints, brutal prompting, and aversives were used on him right in the next room without our knowledge). He was terrorized. His world was torn apart as was his basic trust and autonomic nervous system, and yet THIS WELL KNOWN AGENCY CLAIMED TO USE ONLY "POSITIVE APPROACHES." Later after the trauma I called them anonymously and asked if they used aversives. The answer: "Oh nooooo. We don't use aversives! The only thing we do thats aversive is something that an autistic child doesn't like but wouldn't bother a normal child."
PLEASE, PARENTS, BEWARE! Please professionals, warn parents there are SERIOUS DANGERS in these programs. We were NOT GIVEN THE OPPORTUNITY FOR INFORMED CONSENT by this high profile provider. In fact, a civil rights organization gave me a copy of the "Nuremburg Code for Experimentation with Human Beings" and was shocked to read the first paragraph which states that "there should be no element of force, fraud, deceit......all hazards and effects upon [the subjects] health or person [should] be made known to him."
Apparently this kind of human rights violation just won't go away. And the psychologically disabled are always first on the list.
Read other parents' testimonies delineating the dangers of an ABA program.
Go back to part 1 of the Open Letter
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. Response by Bob King.
Reaction from Amanda Baggs of autistics.org
Read other parents' testimonies delineating the dangers of an ABA program.
If this story is true, Applied Behavior Analysis is a cult.
Resources by and for autistic-spectrum people.
Ballastexistenz Thoughtful and passionate blog about autism and disability.
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