I’ve devoted several posts and parts of some
publications to the claims of Martha Welch, a New York psychiatrist, who used
to claim that she could cure autism and now says she can prevent it. Welch has,
inexplicably, the support of Columbia University, which has appointed her a
sort of peripheral non-teaching faculty member with certain faculty privileges,
and which not long ago gave her an award as a distinguished alumna.
In the 1980s, Welch visited Evergreen, Colorado, home
of Holding Therapy as practiced on adopted children who were said to have
attachment disorders. I have no idea exactly what happened there, but after her
visit Welch decided that autism must be a form of attachment disorder, curable
by facilitating emotional attachment to the child’s mother. She developed a new
form of treatment that she named Holding Time. Rather than the Holding Therapy
methods, which usually restrained the child in the therapist’s lap and used
intrusive and painful shouting and poking to intimidate the child, Welch
proposed that smaller children be held face-to-face with the seated mother and
embraced so they were pressed belly to belly with her. This hold was to be
maintained for an hour or more at a time, every day, as the child screamed and
fought for release and eventually gave in and relaxed in the mother’s arms. Older children were to lie on
their backs while the mothers lay prone above them, partly supported on their arms.
In both cases the mothers were to speak to the children, communicating all of
their negative and positive feelings; the children too communicated a good deal
of negative emotion.
Welch’s approach would probably have remained among
the various obscure “complemetarty and alternative” approaches to autism,
except that in the 1980s she made a connection with Elisabeth Tinbergen, a
special education advocate and the wife of the Nobel laureate in medicine
Nikolaas Tinbergen. Niko Tinbergen was a specialist in ethology, the study of
innate, species-specific behavior patterns; although ethology had focused
largely on insects, fish, and birds, the 1960s and ‘70s were a time when
studies were attempting to find such species-specific behaviors occurring
independently of culture and learning in human beings. The Tinbergens saw
parallels between what Welch was doing and the occurrence of “imprinting”
connections to other animals in ducks. They enthusiastically wrote a book
declaring “hope” for autistic children in Holding Time methods, and included a
long appendix written and illustrated by Welch. The Tinbergen book led to the
publication of Welch’s 1989 Holding Time and
an extensive book tour in Europe during which Welch presided over roomsfull of
mothers holding tightly to screaming autistic children. (The Tinbergens also
encouraged the promulgation of similar methods by Jirina Prekopova, a Czech
psychologist working in Germany.) However, little was made of a point clearly
stated in the Tinbergens’ book: that there was no empirical evidence to support
the effectiveness of Holding Time.
I’ll leave this brief summary now because there is
much more to say about Welch’s current activity. She is now running a program
called Family Nurture Intervention and claims that physical contacts between
premature babies and their mothers can reduce the frequency of autism, which
occurs more frequently in premature than in full-term babies. You can see a
demonstration and discussion of this method at https://www.youtube.com/watch?v=DIXAMaIOK64
(my thanks to Yulia Massino for calling my attention to this video; for some reason I cannot create a link here). Welch is carrying out a research project on the effectiveness of Family Nurture Intervention as a prevention of autism and has described the research plan, a randomized controlled trial, at https://bmcpediatr.biomedcentral.com/articles/10.1186/1471-2431-12-14. Among other things, Welch proposes that autism is related to the presence of abnormal levels of peptides released from the gut, for example secretin and oxytocin (both popular suggestions for treatment of autism in CAM circles).
(my thanks to Yulia Massino for calling my attention to this video; for some reason I cannot create a link here). Welch is carrying out a research project on the effectiveness of Family Nurture Intervention as a prevention of autism and has described the research plan, a randomized controlled trial, at https://bmcpediatr.biomedcentral.com/articles/10.1186/1471-2431-12-14. Among other things, Welch proposes that autism is related to the presence of abnormal levels of peptides released from the gut, for example secretin and oxytocin (both popular suggestions for treatment of autism in CAM circles).
I want to comment on three aspects of Welch’s theory
and research. First, her assumption that babies become autistic because they
miss experiences of physical contact, exchange of odors, and so on with their
mothers is a direct reflection of the very much outmoded “refrigerator mother”
theory put forward by people like Bruno Bettelheim (an art historian who became
focused on child mental health). Bettelheim claimed, without evidence, that
cold, unemotional mothers caused autism by their failure to engage physically
and emotionally with their children. He did not mention premature babies, but
those babies can certainly be included in this hypothesis because their medical
care makes it difficult for parents to touch or engage with them in pleasurable
ways, and even the most loving parents of premature babies will not be able to
care for them as they would normally want to do. In the video mentioned above,
a scientist who works for Autism Speaks points out this problem of Welch’s
approach—that she is accepting something like the “refrigerator mother” theory
in spite of decades of evidence that genetic factors rather than experiences cause
autism.
Second, Welch’s emphasis on literal “gut responses”,
the production of peptides and their effect on the brain, is an example of an
old theme in American CAM. Edgar Cayce, an early- 20th-century “prophet
and seer”, emphasized the work of the “enteric brain” as a source of emotion.
The Meridian Institute of Virginia Beach, VA has continued to promulgate Cayce’s
ideas, which are still part of many CAM approaches. For example, Andrew Wakefield,
the disgraced physician who started the claims that immunization caused autism,
looked to gut contents as evidence that materials of immunization remained in
the body, and, presently working in America, he continues to focus on digestive
tract issues as causes of autism and ways to treat it, in contradiction to all
that is known about autism.
Now, the fact that Welch’s Family Nurture Intervention
smacks loudly of outmoded and CAM beliefs is not enough to condemn it. It would
be very reasonable to say, “who cares if it’s based on wrong ideas? If it
works, that’s what’s important.” And Welch has reported some preliminary
positive results—but this leads us to the third problem about Family Nurture
Intervention studies.
Welch and her colleagues state proudly that they are
carrying out a randomized controlled trial, and most certainly it is
randomized, with families assigned randomly to one of two treatment groups. The
problem is that it is not controlled, despite the presence of a putative comparison
(control) group. Here is the trouble: according to the BMCpediatrics article
mentioned earlier, the two groups are receiving treatments that are different
in a number of ways other than the Family Nurture Intervention itself. In the
FNI treatment group, mothers have 4 1-hour intervention sessions per week, or
more, plus standard care. The comparison group has no specified treatment,
standard care, and 1 meeting a week with research staff in the hospital. In
other words, the FNI treatment groups is experiencing 4 or more times the
socially-supported time with their babies as the comparison group receives.
Such social support is well-known to improve mother’s moods and therefore to
help them interact more patiently and warmly with their babies.
The point of randomization is to help isolate a
variable, which is the crux of all experimental work. Randomizing families to
conditions means that no special characteristic of the people (like knowing
about and wanting a treatment) can interfere with finding the effects of the treatment
itself, which should be isolated from any other possible effects on the
outcome. But randomization alone cannot isolate the effects of the treatment
unless the rest of the design and implementation of the study are correct. The
time spent in treatments is clearly a factor that needs to be controlled, as it
is common for more of a treatment to have a greater effect on outcomes than
less does. When a treatment involves social support for people in a stressful
situation, the time spent and the attitudes of staff are important factors.
This study should have provided 4 or more sessions per week for the comparison
group, devoting them perhaps to supportive interviews and motivational
discussions with the mothers. Otherwise, we can only conclude that having more
sessions has a better outcome-- we can’t
conclude that the Family Nurture Intervention itself is supported.
A 2015 publication by Amie Hane et al (with Welch as a
co-author), https://psychology.williams.edu/files/Hane-et-al-15-JDBP.pdf,
concluded that mothers’ care for babies in the NICU was improved by experience
of the Family Nurture Intervention. However, this article very properly stated
some limitations of the study. “The
control group received standard care (SC) (i.e., usual care) as part of our
randomized controlled trial that included holding and skin-to-skin care if the
mothers chose to engage in these activities. But, there were not corresponding
control conditions for each of the specific activities of FNI. For instance, SC
mothers did not exchange sham odor cloths with their infants (cloths that were
not exposed to mothers and/or infants). The effectiveness of FNI should thus be
interpreted as a function of a comprehensive and integrative intervention,
since during this preliminary trial of the intervention control manipulations
of FNI activities were not entirely possible.” (p. 194). In other words,
mothers in the comparison group may or may not have carried out some of the
activities used for the FNI treatment group, but they did not share any version
of some parts of the treatment, including the length of time per week (this
last not mentioned as a limitation by Hane et al.). The standard care
comparison group did not receive a family support session before discharge as
the FNI group did.
Martha Welch has spent many years arguing in favor of
alternatives to evidence-based conclusions about causes of autism and effective
treatments for the disorder. Her connection with Tinbergen was apparently
sufficient years ago to earn publication of a popular book and the support of
Columbia University. The Columbia IRB approved her research design, weak as it
is, although even non-harmful treatments can be considered as a harmful waste
of time and resources if improper design and implementation of research can
lead to incorrect conclusions. What is this all about? I would like very much
to know.
N.B. Nothing in this post should be taken as rejection of the extensive legitimate research on neural factors in gastric and endocrine functioning; my point is that the existence of such physiological factors is not in itself evidence that supports any statement about autism.
Thank you, Jean, for showing us why we do randomised controlled studies.
ReplyDeleteAnd that thing called TREATMENT INTEGRITY AND FIDELITY. Is Family Nurture Intervention in a book?
And Columbia is very much a writers' university on the open market. It has approved other appalling studies.
And there is a whole study of smell.
And social support is powerful as you said in the paragraph before the one about the randomised studies.
Thank you Niko Tinbergen - all is forgiven. We would expect a Nobel Prize winner to point out the empiricism where it applies in his field.
[I will admit I was much angrier at Tinbergen because I expected more of him - and his brother. And Elisabeth - special education is not exactly a field of rigorous study - except when we read Fixx and Jacobson FADS IN SPECIAL EDUCATION 1994 and 2012].
Maybe she is a graduate or on line for a honorarium or an endowment?
That's a good question, whether FNI is manualized. I don't really know the answer to this.
DeleteAs for a potential endowment: that would explain a lot!
https://www.youtube.com/watch?v=DIMAXa10K64
ReplyDeleteI would like to try to give the working ref. on the VIDEO in youtube (with discussion of FNI project). The ref. now included into the notice unfortunately is not working. So, the correct ref. is the following: https://youtu.be/DlXAMal0K64
ReplyDeletehttps://youtu.be/DlXAMal0K64 Presumably working ref. of VIDEO with discussion of FNI
ReplyDelete