Our daughter Meili is diagnosed as autistic and has severe developmental disabilities. She is 29 years old, but mentally she remains a toddler of two. She has a happy disposition and often makes us laugh. She has caused us much trouble and given us much joy.
Meili’s ability to communicate is very limited. She talks a lot but most of it is echolalic (repeating all sorts of things she has heard). She really knows only a few dozen words, gestures, and stereotyped expressions. She can ask for her favorite foods, a drink, a bath, a ride in the car, or bubbles to catch or to hear music or go to the toilet. She cannot ask or answer a question. Repeated attempts to teach her names of body parts have failed. That is one reason why we want to keep her off psychiatric drugs. She would be unable to use words to communicate any resulting pain or discomfort, which would find an outlet in agitated behavior that care workers might not understand. A likely response would be to increase drug dosage, creating a potentially fatal vicious circle.
Another reason why we want to keep Meili off drugs is her ultra-sensitivity to various substances. Her allergic reactions include swelling that could result in suffocation if it spread to the mouth or throat. Recently we consulted a homeopath and tried some homeopathic medicines on Meili, believing them to be safer than conventional drugs. However, one of them produced a very severe allergic reaction, with swelling (“bubble rashes”) over most of her body and part of her face. The medical literature confirms that a small group of individuals are so sensitive that even ultra-dilute homeopathic solutions endanger them. Meili evidently belongs to this group.
Yet other reasons for keeping Meili off psychiatric drugs have to do with the adverse effects of specific commonly prescribed drugs. Some cause substantial gains in weight and our daughter is already overweight. Others disturb the sense of balance, undermine the ability to control body movements, or cause involuntary body movements. Meili’s balance is already impaired by her typically autistic habit of walking on tiptoes.
We first came under pressure to give Meili a psychiatric drug when she was in her mid-teens. She was attending a local school for autistic children but was unable to adapt to their program, which took little account of individual likes and dislikes and placed excessive emphasis on attempts to change behavior by means of “reinforcement” (i.e., rewards). This does not work with Meili because she lives moment by moment and draws no connection between the way she behaves and any rewards that may or may not follow. Her discontent found expression in moods and behaviors that the staff found difficult to manage.
We were urged to consult a psychiatrist with whom the school had a close working relationship. When I met this elderly gentleman he responded to my concern about adverse effects with the standard drug-industry line – at best a half-truth – that the harsh drugs of yesteryear had gone out of use and been replaced by a new generation of gentler medications. He submitted a report in which he recorded my views in a subtly distorted form that made them look odd and irrational (a sign of my own psychopathology perhaps?).
School personnel always insisted on viewing Meili’s behavior solely as a product of her inner condition. They stubbornly resisted the suggestion that Meili might be responding to the way she was being treated. The directors of the school did not welcome criticism of their methods.
In fact Meili was not unhappy for the whole time she was at this school. There was a period of six months during which her daily report slips were uniformly positive. This was when she was following an individualized plan that I had designed for her in collaboration with one of the more empathetic psychologists at the school (I’ll call him Jeff). After all, by law each developmentally disabled child is required to follow an Individualized Educational Plan (IEP). Our plan for Meili was based on games and activities that she enjoyed and objects that held a special fascination for her.
Autism places enormous obstacles in the way of education, but in many cases it also offers opportunities. Autistic people typically have enthusiasms for specific topics and the teacher should exploit these enthusiasms for learning purposes. The enthusiasms vary from one individual to another as well as shifting over time, so a genuinely individualized approach is essential. At one period Meili was very excited at the sight of elephants; for another child it might be tigers or monkeys.
Later I asked repeatedly whether Meili was still on the plan that Jeff and I had devised for her, but I never received a reply. Some years later I happened to run into Jeff again while on my morning walk. He said that he had been dissatisfied at the special school but had now left and felt free to tell me what had happened. A secret decision had been made, over his objections, to put Meili back on the standard program. The trouble, as he explained it, was that the school wanted to expand and pack in more students and that was considered incompatible with genuinely individualized plans. The state’s Department of Developmental Disabilities, faced with ever-increasing numbers of children diagnosed as autistic, also wanted them to expand.
At a certain point we came under sustained pressure to put Meili on a psychiatric drug. As a carrot, we were shown round one of the group homes associated with the school and assured that a place there was waiting for Meili if only we would agree to drug her. At the same time we were urged to consult another psychiatrist who worked at another institution that happened to be controlled by the same people who ran the school. In retrospect I realize that we should have insisted on seeing an independent psychiatrist.
Without our prior knowledge or consent, a film was made showing Meili removing her clothes (one of her “challenging behaviors”) and shown to this psychiatrist to prove to him how difficult Meili’s behavior was and how urgently she needed to be drugged.
School staff also “helped” the psychiatrist by suggesting possible psychiatric diagnoses. One of their ideas was that Meili might be suffering from brain seizures that left no observable trace because they were of extremely brief duration. It was suggested that her echolalic talk about things that had nothing to do with the here-and-now might indicate that she was having hallucinations – an idea that revealed an astonishing ignorance of autism. I responded that the diagnosis of autism accounted quite adequately for all Meili’s behaviors, which were long established and persistent and therefore did not require additional diagnoses. The problem from their point of view was that no psychiatric drug is identified as a “treatment” for autism as such.
So far as we were aware, the attempt to pin a psychiatric diagnosis on Meili was abandoned. Arguably that was a worthwhile achievement in itself. However, the absence of a diagnosis was not considered an adequate reason to avoid drugging. So the psychiatrist – under pressure from a senior psychologist representing the school who was present at the consultation – acceded to the demand of his employers and recommended putting Meili on a drug. Then on the basis of our rejection of the recommendation, Meili was expelled from the school.
What next? Someone suggested to us a way out of the impasse: we should get Meili admitted to the observation unit at a local mental hospital. Youngsters with a wide variety of mental, emotional, and developmental problems stay in this unit for several weeks. The official purpose is to observe and assess them, but the main goal is to try out different drugs on them and find one that they appear to tolerate.
And so Meili entered this unit. It was the first and only time that she has lived away from home. Nevertheless, she adapted quite quickly – even before any drug was tried on her.
The psychiatrist in charge of Meili at the hospital (Dr. Q) was a decent and helpful person. She agreed that some psychiatric drugs, such as Haldol and Lithium, were indeed too dangerous to be given to individuals like Meili. I was unhappy that she placed so few drugs in this category, but she did her best to accommodate our concerns. A drug was finally selected that seemed from the literature to be relatively safe – Tenex.
Dr. Q also arranged a meeting with a senior psychologist from the school Meili had previously attended to see whether it might be possible to negotiate Meili’s return there. It was not, but one thing this man said has stuck in my mind: “Half the time Meili was laughing and I did not understand why. The other half of the time she was crying and I did not understand why.” It was remarkably honest of this man to admit to having so little insight into the minds of the children in his care, but what good had his study of psychology done him?
Meili started the Tenex on what was considered the very low daily dose of 0.25 mg. After a few days I received a call from another psychiatrist at Bradley, who asked us to agree to a doubling of the dose to 0.5 mg. I persuaded him that rather than raising the dose they could increase the effect by giving Meili the drug in the morning instead of at night. And that is what they did. The dose was never increased. However, even at this low dose Meili suffered from severe constipation and when she returned home we discontinued the drug.
Dr. Q got Meili into another special school – a small place we had never heard of. She seemed content there. The staff never raised the issue of medication. At the age of 21 she transferred to the day program of an agency that caters to developmentally disabled adults. She still attends this program and her continued attendance has never been made conditional on her taking a drug.
What enabled us to resist the pressure to put our daughter on drugs? If we had come under such pressure just a few years earlier we might well have succumbed. The chain of events that empowered us began when I lost my position on the faculty of a university. I was unhappy about this at the time, but it did help us protect our children against psychiatry and its drugs. I obtained freelance work while my wife took a job at a group home for emotionally disturbed young women. She took this kind of job specifically in order to learn things that would help us make decisions about Meili’s future. And by directly observing her clients and hearing their tragic life stories she did indeed learn a great deal about the effects of psychiatric drugs and psychiatry as a social institution. I supplemented what she told me by searching out and reading critical literature on psychiatry, especially the books of Dr. Peter Breggin. So when we encountered the drug pushers, we had the knowledge we needed to push back.
As for the future, we realize that we are growing older (I am now 65, my wife not much younger) and that we cannot continue looking after Meili forever. Existing residential agencies are clearly unwilling to provide a place in a group home without a “medication plan.” That is why we tried homeopathy, hoping that it might provide an acceptable alternative to psychiatric drugs.
We acknowledge that in certain cases drugs are necessary on strictly medical grounds – for example, to control brain seizures. But there is no good reason why the majority of people with developmental disabilities, even severe ones, should not be cared for without drugs. It is shameful for further impairment to be inflicted on those who are already impaired and for the most helpless of our fellows to be subjected to torment merely in order to make it a little easier to look after them.
We still hope to protect our daughter from psychiatric drugs by setting up a non-standard arrangement outside the control of the existing agencies. If we can find other families in our area who are in a similar situation and share our views, then we may pool resources with them to set up a new home that will provide drug-free care to adults with severe developmental disabilities. This may take the legal form of a cooperative or a non-profit corporation, each of which has its advantages and disadvantages. Another variant that does not depend on cooperation with other families is shared living with a live-in caregiver.
This is a complicated subject, so here I’ll just point the reader to the two sources of information that I have found most useful:
(1) a book entitled Moving Out: A Family Guide to Residential Planning for Adults with Disabilities by Dafna Krouk-Gordon and Barbara D. Jackins (Woodbine House, 2013);
(2) the website of the organization Autism Housing Pathways (AHP). The detailed information is in the section for members only, so you will have to join, which costs $35 a year.
In non-standard arrangements the family or families usually provide the house from their own resources, food and household expenses are covered by clients’ SSI or SSDI, and funds for staffing come from the state government. This, however, depends on the state government approving the arrangement. Although new federal regulations facilitate and encourage a wide range of non-standard arrangements, state governments still have the right to decide what kinds of arrangements they will recognize for funding purposes. Different states have different policies in this area. AHP is based in Massachusetts, so some of the options they describe may not be available in other states. Some lobbying may be required.
Yesterday I went to my doctor for a flu shot. While sitting in the waiting room I noticed a man accompanied by an Indian lady in a sari. His dull, immobile face gave him a rather strange look. He was single-mindedly eating candies from a bag. The nurse came in and called for him. “You can finish them later,” said the Indian lady, who was clearly there to look after him. But he insisted on finishing the candies first. The inflexibility suggested to me that he might be autistic. Eventually he stood up and shuffled off, shoulders hunched forward.
Did the other people watching this scene in the waiting room understand that the dull, immobile face, the shuffling gait, the hunched shoulders are not part of his developmental condition but signs of tardive dyskinesia, effects of the psychiatric drugs used to control him? Did his caregiver understand this?
What a contrast with Meili – also autistic but otherwise healthy, happy and lively! What does it matter if she is sometimes mischievous or hard to manage? The drug-poisoned man in the doctor’s waiting room – one of how many! – symbolizes for me the fate that may be in store for our daughter despite our best efforts to protect her.