Autism Treatments, Science, Risks, & Benefits

The Association for Science in Autism Treatment (https://asatonline.org) is an interesting organization that includes some big names ( like Tristram Smith) and seems to have the admirable goal of providing information about autism treatments that can help parents make their own choices of treatment. The website has a considerable list of specific treatments and the empirical evidence that supports them, if there is any. It’s a good place to find definitions and descriptions of both well-known and obscure treatments that target autism spectrum disorders.

Looking at the evidence for various autism treatments as discussed at asatonline.org, we’re reminded of the great difficulty of outcome research in general and work on autism in particular. Because therapies have shared general factors (like individual attention) that can cause improved outcomes, it’s important always to compare the outcome of a type of treatment to the outcome seen when there is no treatment, or a treatment whose effectiveness is already known. It’s not enough to report that a group of people did better after a treatment than they did before—they might have done just the same (or even still better!) if they had no treatment at all. When a study focuses on children, this is a point of special importance, because children change quickly as a result of their natural development, even if they are on an unusual developmental trajectory like autism.

When a comparison group is used in studying treatment outcomes, it’s essential that every person being treated has an equal chance of getting into the treatment group or into the comparison group. They need to be randomly assigned to groups, not allowed to choose for themselves which group they prefer. If that’s not done, it may appear that a treatment is more effective than the comparison simply because the people who chose it are in better shape to begin with or are more sensitive to treatment.

You can see how difficult these things may be to do, especially with respect to autism. Permission for autistic children to be in outcome research has to be sought from their parents, who may be horrified at the thought that their children will be “guinea pigs” , may be frightened of what researchers might do, may be extremely protective of their vulnerable children, and may simply have so many demands in their lives that they cannot cope with the inconvenience of being responsible  for participation in research. They may resent the idea of having their children assigned at random to treatment conditions or to a comparison group, even if they are promised that each child will eventually get treatment. The children themselves may be reluctant, anxious, oppositional, or in other ways require a great deal of individual handling.

It’s far from surprising that no autism treatment has nearly enough empirical work supporting it, and it’s to the credit of ASAT that they do their best to make this plain. However, there are some points they fail to make as clear, and I am not sure whether this failure occurs because the website authors don’t want to offend anyone who proposes an autism treatment.

The first problem I see on this website is that quite a few proposed treatments are listed under the heading “doesn’t work or is untested”. Now, although I am quite aware that it is not possible to show that something does not exist (unless you can find some mutually exclusive thing that can be shown to exist), but I would argue that there is a big difference between treatments that have been thoroughly tested  and shown to be ineffective, like Facilitated Communication, and those that have never been tested in any systematic way, like Son Rise.  When a treatment has been systematically tested, there are some things we can know about it, for example that there are people who have been trained to apply the method in a predictable way. In addition, we have evidence that the treatment does not make a condition worse; not all therapies are really “therapeutic”, and some actually exacerbate problems. Systematic investigation of a therapy can also tell us whether other forms of harm were done, including whether autistic children (or others) found the treatment distressing or frightening. Choosing a treatment scientifically requires attention to both demonstrated benefits and demonstrated risks of the treatment.

The asatoline.org website is not very different from some similar sites with respect to this problem of grouping together untested and tested but ineffective treatments. The California Evidence Based Clearinghouse for Child Welfare (www.cebc4cw.org) similarly confuses issues  as it rates treatments both in terms of their evidence basis and of their importance for child welfare concerns; users may not notice the difference between these ratings. In addition, cebc4cw.org bases its rating on information provided by advocates of treatments. The California site also rates many of the listed treatments NR (not rated) because no evidence is provided—leading to a situation somewhat like that of asatonline.org, where the listing of a treatment does not necessarily indicate that its outcome has been tested systematically or that it has been shown to be effective.

A second problem of the asatonline.org site is that the material presented mentions almost nothing about potential harms associated with treatments. This topic has received increasing attention over the last twenty years or so, and that attention has been strongly focused on unwanted effects on vulnerable individuals like autistic children. The journal Clinical Psychology is preparing to do a special issue on potentially harmful psychotherapies. Potential harms from mental health interventions can range from physical injury and death to “opportunity costs”, the loss of opportunities to make use of effective treatments or of limited resources like time and money that might be better spent on other needs of an autistic child or of other family members.

The ASAT website lists “patterning” as an ineffective or untested treatment. Patterning is a physical movement therapy that involves having five adults move a child’s head and limbs through positions characteristic of infant reflex movements, on the assumption that the nervous system can be “rebuilt” by this reenactment of early life. Patterning for autism and nervous system injuries has been rejected twice by committees of the American Medical Association It  has not only never been shown to be ineffective, it also has the potential for physical injury as untrained people move the child’s head and limbs into different positions. Above all, patterning has opportunity costs, as it is to be done several times a day, exactly on schedule, by a number of adults greater than is found in most Western households. Patterning is privileged over adult work and the needs of other children in a household, so that family functioning is negatively affected, as are relationships with family members, friends, and neighbors who are repeatedly asked to help with the therapy.

Similarly, asatonline.org lists Faciitated Communication (FC) as an unsupported or untested therapy for autism. FC is a method by which an adult works with a child to use a keyboard with the intention of understanding thoughts the child cannot express in speech. FC has received systematic investigation and it has been demonstrated that what is “said” on the keyboard stems from the beliefs and thoughts of the facilitating adult, not the child. The website makes this clear, but does not note the harm done to a number of families when a facilitating adult used the keyboard to accuse a family member of sexual abuse of the child, causing a criminal investigation with all its associated stress and mutual distrust in the family.

The ASAT website lists under unsupported and untested treatments two associated therapies, one under the name “bonding (attachment ) therapies “ and the other under the name “holding therapy”. The first covers both holding therapy and “gentle teaching”, although holding therapy appears again under its own name. Egregiously, neither of the references to holding therapy gives a complete description of how it is done and the potential for physical and psychological harm inherent in this coercive restraint treatment, although the first description does use the word “forcibly” and warns parents against covering the child with blankets as part of this method. The first description also notes that autism is not a bonding or attachment issue, so a therapy that is posited to increase attachment is in any case irrelevant. Both descriptions end with the idea that well-designed and implemented research on holding therapy is needed. None of the risks, child injuries, or deaths associated with holding therapy are mentioned. The pain and fear experienced by children undergoing this treatment are well established and are frequently discussed by adults who went through holding therapy on a closed Facebook group called “Attachment Therapy Is Wrong”.

I find it quite disturbing that a website stressing a scientific approach should omit well-known information about the potential for harm shown by some treatments. The risks associated with holding therapy have been understood for over two decades. A scientific approach must examine both risks and benefits of a treatment, even one for competent adults--  when the patients are autistic children who cannot make their own choices, the information give to parents must be particularly concerned with the potential for harm. 

I'm going to add to this post a statement made by an English man with autism, Les C., now an adult, about his childhood experiences with holding therapy: 

My life experience as a undiagnosed autistic/ aspergers child.

My parents have always said that my problems started when I started school. At age 4 I went to playschool with my mam, so I was never left with other children, until my first day at primary when I was 5.

I was very upset, and I could not understand why my mam had gone home and left me, so during most of the day I sat crying and saying I wanted to go home and I didnt like being with other children who just got on with it. After break time when the whistle was blown, all the other children lined up ready to go back inside, while I ran the other way onto the field and rolled on the grass. I vaguely remember doing this and maybe because I thought it was funny to get the teacher to run after me.

The head teacher had said to my mam that my behaviours were not acceptable and that I could end up in borstal if something was not done. In a later year, I found out that I was the only one in the class that was adopted when someone in the class mentioned it, but I didnt know what it meant, and the other children seemed to treat it like a joke that I didnt have natural parents. My mam explained to me what it meant and at first I felt left out, but I didnt have a problem with it, but my parents started to think that I did.

Over the years I never mixed or made friends like others did, and had many problems at home and at school. My parents found my behaviour very alien and badly behaved. I was born in the 70s when in them days some parents punished with shouting and slapping. I was also taken to see numerous  child psychologists and councillors, where my parents would do the talking, while for me I could not communicate. My mam had read some information on autism which was very little at the time, and mentioned the possibility to a psychologist of me being autistic, but they said no and that I was just a very naughty attention seeking child. My autism has affected me differently to how it has other people. I see and feel things differently to others. I could not help the way I behaved, and my parents could not cope and were getting to their wits end. For me I had a high sensitivity of being physically touched in childhood. I was fine with my parents holding my hand to go out or being asked for a light hug, but anything more than that was uncomfortable and distressing if pushed over my limit.

If my mam came and touched me or to put her arms around me, I would resist and push her away. To a parent, that may seem perfectly natural and comforting, but to me it was not, but as a child I couldn't think of a way to explain it. The times when I was slapped for something wrong, and what is just a little tap to a parent, was like a big bash over the head for me, so I naturally went berserk, and retaliated and all hell breaks loose. I wondered when are they going to get the message that its painful for me to be touched.

Every so often I had to go to hospital appointments to see a orthopaedic doctor about my legs because they were not growing right along with my weight issue. Again I hated these appointments because of the touching, so I was probably being awkward. The doctor included in the medical notes that I was out of control and disturbed in some way. When the time came that they felt I needed to have surgery, which I didnt want and still wish I had not, because I wasnt unhappy with the way things were. My parents were concerned about my mobility in case I ended up disabled, so I didnt get listened to, and was taken to hospital, which I thought was a good way to get off school because I was bullied with no friends, and I was early years at the big school now. I was pressurised into having it done. The nurses were horrible to me, they treated me like I was some sort of a freak, and didnt care about my pain until I asked for painkillers. I hated them touching me to remove my stitches and dressings. My leg was stiff, they told me to bend it, or they would get the physiotherapist onto me. The physio came and she was great with the other children on the ward, but she was nasty and brutal with me while the others watched me scream, cry and shout in pain.

I assumed the nurses told my parents everything that happened, but they had not, and they would not have allowed this if they did. It sounded like the psychologist I was under at the time told my parents and the hospital staff not to listen to me. Time off school for another traumatic experience of pain and physical touch, I was no better off.

Sometime later after that, I decided I wanted to spend some time on my own away from home and school. I had bath, got into my favourite clothes and left with my savings book without saying anything. I was found by the police and brought home, and they all wanted to know why I did it.

I did this on 2 occasions, and the 2nd time, 2 nice policemen brought me back and said if I went missing again I would be taken into a home.

My parents thought that I did this because I was adopted, so again I was taken to see a doctor who introduced me to a lady that I could see and talk to and go out and do things with, and that she was adopted too. I did not want this because I didnt really have a problem with it.

Then later my mam read something in a magazine about holding therapy, or someone that had told her about a lady that did it. She did not know what it was or what it was all about, but she told me that we were going to see a lady that could help. A lady who learnt from Welch, unknown then.  As usual, I would just be sitting listening to my parents tell her about everything including our rows, being pushed away and that I was adopted. Surely with experience with others, she should know that I have a resistance to being touched. So what sounded very nice and loving to my parents was agony to me. The distress I have had with unwanted physical touch was bad enough. My parents were desperate for a solution, so they listened to whatever she said to do a hold no matter what I was to say or do to get away from this prolonged uncomfortable painful touch.  A week later, after it had happened 3 more times at home, including the lady coming to our home where another session took place, and seeing her doing this on a TV documentary with others, I was lucky that my dad put a stop to this because he couldnt see how it would solve anything, and he did not like the atmosphere, and for me this had greatly pushed my limits of touch over the top to torture.  My grandparents at the time were told about this, and they agreed that my dad did the right thing. After this last resort, my parents just had to accept the way I was.

END.

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