Autism Research Review International, 1994, Vol. 8, No. 1, page 3
The second great autism watershed
Bernard Rimland, Ph.D.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116
Judging from what I have been seeing and hearing in the past year or so,
another big change is taking shape in the world of autism. It seems to
me that, as never before, parents are starting to take responsibility for
their children's future. That is a very promising development.
The first great shakeup in the autism world took place a quarter
of a century ago when the parents discarded the chains of guilt by rejecting,
after decades of oppression, the "blame the mother" dogma preached by psychiatry.
I am proud that my book Infantile Autism: The syndrome and its implications
for a neural theory of behavior (1964) played a large part in that
revolution. David Katz reported in 1979 that "ninety percent of the people
in the field agree that Rimland's book blew Bettelheim's theory to hell."
The second revolution is a welcome and long-overdue extension
of the first: parents are taking a much stronger and more active role in
determining what is done to help their children. Note that I say "determining,"
not "advocating." Parents have always advocated -- the difference
is that now, increasingly, they are deciding and acting, rather than
requesting or pleading. These changes are taking place on both the educational
and biological fronts.
Intensive early intervention. Nowhere is the new activist
stand more evident than in the explosion of intensive early intervention
programs. The early issues of the ARRI chronicle the beginnings
of this movement. ARRI (1/1) reported "the first published results
of the UCLA 15-year follow up study of autistic children given intensive
40-hour-per-week behavior modification." Forty-seven percent
of the intensively taught children were successfully mainstreamed, compared
to only one of forty students in the matched control groups of children
who received less intensive behavior modification. The study provoked
controversy (see ARRI, 1/3), but that did not deter parents of young
autistic children from trying intensive behavior modification. (See also
ARRI, 7/1.)
In other articles (ARRI, 1/1, 6/2), we reported the results
of the Princeton Child Development Study, which also showed extraordinarily
good results for autistic children given intensive early intervention.
There were no guarantees, but there was opportunity. Here was
evidence that young autistic children could be helped. Don’t wait -- act!
Parents started their own home-based programs, using the Lovaas
Me Book, and using whatever local resources they could muster from
contacts within the psychology departments at local colleges. More recently,
the early intervention movement was given major impetus by the publication
of Catherine Maurice's superb book, Let Me Hear Your Voice. Two
of the three Maurice children had been diagnosed as severely autistic by
the best known clinics in New York City. Their mother's book provides a
beautifully-written, day-by-day, detailed account of her struggles and
the eventual recovery of both children, primarily through the medium of
intensive early behavior modification. The text and appendices
have provided both inspiration and information to innumerable families
with young autistic children world-wide.
And it is working! I have heard from scores of parents that they
have instituted similar early intervention programs, by hook or by crook,
home-based or school-based, almost always with excitingly positive results.
Good news indeed!
Biological interventions. Parent activism has also accelerated
dramatically on the biological front. As readers of the ARRI know,
I have repeatedly called attention to the excellent results which are often
seen by parents who try high-dosage vitamin B6 and magnesium, and/or dimethylglycine
(DMG) on their autistic children and adults. These are natural substances,
found in small amounts in food, do not require a prescription, and
are immeasurably safer and more rational than any drug. In the case of
B6/magnesium, there are now 18 consecutive published studies showing
benefit to autistic persons, and none showing harm. Recently there has
been an enormous upsurge in the number of parents reporting that they
have tried B6/magnesium and/or DMG, often with good or even spectacular
results. Adverse effects are very uncommon, never serious, and always short-lived.
Lately, in addition to parents trying B6/magnesium and DMG, I have been
hearing about trials of other natural substances -- again with considerable
benefit, in many cases, and no significant ill effects. The list of parent-initiated
experiments with nutritional supplements includes trials of vitamin
C, folic acid, carnitine, coenzyme Q10, taurine, and melatonin, among
others. (Melatonin is a hormone, rather than a nutrient, but it can be
bought without prescription from health food stores and some parents report
good results, especially in children with sleep problems, when given only
one to three 3mg tablets of melatonin per day.)
What is the proper dosage range for these substances? I don't
know, but I am trying to find out. If you have tried, or are trying, any
of the above substances, or any other naturally-occurring, non-drug nutrients,
herbs, or quasi-nutrients on an autistic child or adult, please write me
with information on the size of the person, dosages used, duration of trial,
time before effects were seen, and nature of the effects seen, both positive
and negative (especially if any negative effects are seen). When I have
enough information to make informed suggestions, I will provide it
to our readers.
What accounts for the sudden upsurge in parent-initiated trials
of nutrients? There are several factors:
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1. The excellent results often reported for B6/magnesium and DMG, with
no significant adverse effects.
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2. The long series of failures of highly-touted "wonder drugs" for
autism. and the high frequency of toxic side effects.
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3. General disillusionment with orthodox medicine. (Last year the New
England Journal of Medicine reported, with some alarm and dismay,
that 33% of Americans had turned to practitioners offering alternative
health care methods.)
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4. Fear -- well justified, unfortunately -- that if the FDA is not
soon reined in by Congress, the public will no longer be free to buy the
nutritional supplements and other non-drug substances that they are now
trying out on their autistic offspring.
Parental disempowerment. Lest we get too euphoric about parental
muscle-flexing, let me mention an unfortunate counter-trend: parents' rights
to make decisions for their handicapped children are increasingly being
usurped. Recently many parents have begun to report that they have been
ignored, bypassed, and even blatantly overruled, in some cases, by school
officials, social workers and other representatives of various bureaucracies.
These people will tell you that your child's philosophy happens to match
theirs, but not yours, with regard to sexual freedom, drug use, where to
reside, and so forth. This deplorable situation is one outcome of the rise
of advozealotry that I decried in a recent ARRI editorial (ARRI,
7/4). Pretend that the handicap is not real -- assume it out of existence,
and it will somehow disappear, the advozealots believe. My advice
to parents confronted with this problem is: don't buy it! Tell the
officials in no uncertain terms that you, not they, are responsible for
your child, and you do not join them in their fantasy that your child is
not truly handicapped.
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