To what extent can herbal medicine respond to the debate
and controversies involved in the experience of Autistic
Spectrum Disorder?
Catriona Stewart June 2004
This report is submitted in fulfilment of the requirements of the University
of Wales for the award of MSc in Herbal Medicine
Summary
Research into Autistic Spectrum Disorder (ASD) reveals high levels of controversy
among professionals and parents of children with ASD. There are many theories of
aetiology and approaches to treatment, with much disagreement as to the validity of
any of them. The purpose of this paper is to discuss the extent to which herbal
medicine has something to offer children with ASD and in particular to what extent
herbal treatment can respond to the issues raised by the complexity of this disorder.
Methodology was primarily a literature review, with additional ethnographic content.
In-depth interviews were conducted with a number of professionals as well as the
mother of a child with Asperger’s syndrome. A conference on Biomedical
Interventions in Autistic Spectrum Disorder was attended.
While
current
orthodox
approaches
are
based
on
ASD
as
a
neurological/developmental disorder, alternative theories describe it as a metabolic
disorder causing neurological and developmental damage. Although treatments
arising from these theories are controversial, enough progress - at least in the
alleviation of some symptoms, only rarely in terms of a ‘cure’ - has been reported to
encourage many parents to pursue them.
Approaches used in alternative modes of treatment of ASD are similar in terms of
basic principles to those used in herbal medicine. Additionally, herbal medicine can
treat many common symptoms of ASD as well as supporting dietary treatments.
It was found that herbal medicine has much to offer in the treatment of children with
ASD and their parents, in particular in response to issues raised in debates on the
condition. However, there is a lack of awareness of what herbal medicine has to
offer. Parents of children with ASD and other practitioners need to know what herbal
medicine does before it can be viewed widely as an appropriate and readily
available resource.
2
Acknowledgements
Thanks to Midge Whitelegg, MNIMH, for support and
guidance. Thanks to Ken Aitken, Kit Acott, Michael
Macreadie and Dorel Raymond for giving up their
valuable time to share their knowledge, insights and
personal experiences. Thanks to my children, Olivia and
Rowan, for providing much of the motivation for this work.
Contents
Summary
p2
Acknowledgements
p3
Contents
p3
Introduction
What and How?
p4
Chapter 1
Diagnosis
p5
Chapter 2
Treatment as determined by theories of aetiology.
p 10
Chapter 3
The Gastric Link
p 13
Chapter 4
MMR
p 18
Effects of the MMR debate
p 18
Other possible factors
p 22
1.
Mercury
p 22
2.
Essential Fatty Acid Dysfunction
p 24
3.
Gut flora
p 27
4.
Other theories of metabolic dysfunction
p 27
Chapter 5
Chapter 6
Care and treatment
p 28
Chapter 7
The parent’s perspective
p 33
Chapter 8
The herbalist’s perspective
p 39
Chapter 9
Conclusion
p 46
Appendix A
Nutritional perspectives of the behavioural child
p 51
Appendix B
General Issues in the Use of Medication in ASD
p 56
Sources
References
p 57
Conference
p 60
Interviews
p 60
3
Introduction
What and how?
Definitions of Autism have altered substantially in the 60-odd years since it was first
identified and named by Leo Kanner in 19431. Autism, now known as Autistic
Spectrum Disorder, is defined as a developmental disorder being
“… a collection of behavioural symptoms characterised by dysfunction in
social interaction and communication in affected children. It is typically
associated with restrictive, repetitive, and stereotypic behaviour … The
cause of this disorder is not known” (Horvath K, Perman JA June 2002)
and
“… a pervasive developmental disorder manifested in the first 3 years of
life by dysfunction in social interaction and communication” (Horvath K,
Perman JA Oct 2002)
Research into available information on Autistic Spectrum Disorder (ASD) reveals a
substantial level of controversy, dissent and dissatisfaction among parents of
children with ASD and professionals working with these children. Theories of
aetiology abound, with a correspondingly high number of approaches to treatment
used and there is much disagreement as to the efficacy of any of them. The
complex nature of this disorder, or range of disorders, makes it both a fascinating
subject for study and a challenging area of research. It is also, unquestionably, a
cause of much frustration and distress to people closely involved in the care of
children with ASD.
With the number of complex issues involved in this condition, it is not immediately
apparent where, if anywhere, herbal medicine can offer any additional or alternative
constructive intervention or treatment. The purpose of this paper is to discuss the
extent to which herbal medicine has something to offer children with ASD and their
parents.
1
For reference, see eg. Kanner, L., 1943. Autistic disturbances of affective contact. Nervous
Child 2 1943.217-50
4
The research carried out was primarily in the form of a literature review, but with
additional ethnographic content. In-depth interviews were conducted with a number
of professionals, including an educational psychologist in charge of education at a
residential school for children with ASD, a clinical psychologist specialising in the
treatment of ASD and an experienced practising medical herbalist as well as the
mother of a child with Asperger’s syndrome. Information was added from personal
unstructured observations of patients and from telephone interviews with other
herbalists. Additionally, a conference on Biomedical Interventions in Autistic
Spectrum Disorder, held by the Autism Research Unit at Sunderland University, was
attended.
‘Amongst the multitude of diseases and disorders which can afflict
mankind, autism is one of the very few which are still defined in terms of
the symptoms which are observed. Thus it remains a "syndrome" with
no clear explanation for its causation or existence at all. Over the years,
there have been many attempts to determine the underlying causes but,
as yet, there are no universally accepted explanations. Psychiatrists,
psychologists, geneticists, anatomists and electrophysiologists and other
groups have provided explanations based upon their own
understanding. Each of these groups has provided valuable insights but
an intellectually satisfactory explanation remains tantalisingly out of
reach (Shattock and Savery 1996).
In fact the authors above, Paul Shattock and Dawn Savery, who work at the Autism
Research Unit based in Sunderland University, are two of many people involved
with Autism who take a different view of the condition altogether. While mainstream
thinking is very much based on the concept of ASD as a neurological/developmental
disorder, alternative theories describe it as a metabolic disorder resulting in
neurological and developmental damage or distortion (eg Shattock et al, Shaw etc).
These theories are discussed later on in this paper, but are very important in relation
to any intervention not strictly psychological or educational in mode, including the
use of herbal medicine.
Chapter 1
Diagnosis
A clear diagnosis of Autistic Spectrum Disorder can be difficult to achieve, as the
severity and range of symptoms are so variable, hence the renaming of the
condition to be ‘Autistic Spectrum’, rather than Kanner’s original ‘Infantile Autism’.
According to some professionals, how efficiently a child is diagnosed and then
5
referred on to the appropriate people may be dependent on in which part of the
country they live (see McCreadie 2004 and Aitken 2003)
ASD may be differentiated by whether it is diagnosed in any one case as being
classic Autism, as defined by Kanner in the 1940’s, or Pervasive Developmental
Disorder Not Otherwise Specified (PDD-NOS). There is also Asperger’s Syndrome,
mainstream acceptance of which as a separately definable condition has only been
in place since the 1990’s and which is the subject of some debate. The condition
was originally described as distinct from Kanner’s Infantile Autism, in 1944, by Hans
Asperger (Klin and Volkmar 1995). Asperger’s Syndrome (AS) is a severe
developmental disorder characterised by major difficulties in social interaction, and
restricted and unusual patterns of interest and behaviour. There are many
similarities with autism without mental retardation (or "Higher Functioning Autism")
and the issue of whether Asperger’s Syndrome and Higher Functioning Autism are
different conditions is not resolved. (Miller 2000 from the website of the Autism
research Institute available at www.autismresearchinstitute.org., accessed Feb
2004. See also Frith 2004.)
To some extent, the answer to this question depends on interpretation by clinicians
of the concept, since until recently there was no "official" definition of Asperger’s
syndrome. Lack of consensual definition led to a great deal of confusion before an
‘official’ definition was made, as clinicians used the label based on their own
interpretations or misinterpretations of what Asperger’s syndrome "really" meant,
and parents were often faced with a diagnosis that nobody appeared to understand
very well. Worse still, at first, nobody appeared to know what to do about it, there
was no published information providing parents or clinicians with guidelines on the
meaning and implications of Asperger’s syndrome, including what of what the
diagnostic evaluation should consist and what forms of treatment and interventions
were warranted.
This situation has changed somewhat since Asperger syndrome was made "official"
in DSM-IV (American Psychiatric Association, 1994), following a large international
field trial involving over a thousand children and adolescents with autism and related
disorders (Volkmar et al., 1994). The field trials revealed some evidence justifying
the inclusion of Asperger syndrome as a diagnostic category different from autism.
However, the problems are far from over and knowledge on Asperger syndrome is
still very limited (Howlin, Asgharian 1999).
6
The Autism Research Institute in the USA offers this advice:
“Parents are urged to use a great deal of caution and to adopt a critical
approach toward information given to them. Ultimately, the diagnostic
label - any label, does not summarize a person, and there is a need to
consider the individual's strengths and weaknesses, and to provide
individualized intervention that will meet those (adequately assessed
and monitored) needs. That notwithstanding, we are left with the
question of what is the nature of this puzzling social learning disability,
how many people does it affect, and what can we do to help those
affected by it” (available at www.autismresearchinstitute accessed Nov
2003).
Additionally, there is a hugely controversial ‘regressive’ autism - controversial
because its existence is disputed, mainly in arguments over any possible connection
with the Measles, Mumps and Rubella vaccine (MMR). Although it is accepted that
some regression is usually involved in the development of ASD (Shattock et al UK), 2
the levels of regression may not be as significant as is perceived by many parents in
their subsequently diagnosed children, but there is also a rise in levels of reported
‘regression’. If a separate ‘regressive’ autism exists, then it is indeed possible some
external intervention or environmental factor in all these children’s lives may be
responsible – one common intervention in very young children is the injecting of
multiple vaccines, including the MMR. Theories of aetiology in ASD are discussed
further later in this paper.
These definitions of the different forms of ASD constitute a highly disputed area, one
of malcontent amongst recipients of the diagnostic methods available. For example,
children may now be diagnosed as not having Autism as such, but Pervasive
Developmental Disorder, Not Otherwise Specified or PDD-NOS. The existence of
PDD-NOS was hotly denied in 1993 by Dr Bernard Rimland, who was a founding
member of the USA-based Autism Research Institute and who saw the usage of the
term as being a means of avoidance in terms of diagnosis and a continuing search
for aetiology or aetiologies (ARI available at www.autismresearchinstitute 2004). Dr.
Rimland has made the point that many professionals working in the field of autism
do not perceive it to be a pervasive developmental disorder in the same order of
2
This apparently quite a major shift in mainstream perception from, for example, 1974, when
it was believed “there is no such thing as regression” to 2003, when it has been stated “some
children with ASD do show regression” or even “all children with ASD show some signs of
regression”. Whitely, P., Conference on Biomedical Interventions in ASD 2nd, Newcastle
March 2004, ARU Sunderland University, UK.
7
some severely retarded people who may have chromosomal defects affecting every
cell of their body, but in fact a specific one, with specific characteristics, being
deficits in social and cognitive functioning (Bernard R, from Autism Research
Review International 1991, Vol 5, No 2).
Dr Rimland was the first professional working in the field of ‘Infantile Autism’ to
suggest, in 1964, that autism was not a psychological disorder but a neurological
and physiological one (Seroussi 2002). Dr Rimland has ‘broken away’ from the USA
Autism Research Unit that he helped to found and has established a separate
organisation called Defeat Autism Now! (DAN!) which will be discussed later
(Rimland 2003). It is worth noting here, however, as an example of just how divided
opinions on approaches, labels, aetiology, diagnosis, and treatment are amongst
those working at any level with this disorder.
There is no disagreement that within the spectrum, there is a large differential
among the children in terms of intellectual and cognitive abilities, leading to the term
‘high functioning autism’ being applied to those of average or above-average
intelligence, while many children with ASD are classified as having mental
retardation. This wide range of symptoms and levels of ability or disability has led to
debate over whether there is, in fact, a number of different pathologies involved, or
places on a continuum of levels of severity of the same pathology, with some people
including Dyslexia, Dyspraxia and Attention Deficit Hyperactivity Disorder as places
on this continuum.
For example, Dr Andrew Wakefield, on the website of the charitable organisation
Visceral for which he works, has stated:
‘It has become increasingly clear in recent years that autism is an
umbrella term for a collection of closely related disorders, whose
causation is likely to prove as varied and complex as the autistic
spectrum itself…’ (Wakefield 2003 available at www.visceral.org)
The diagnosis of a child with ASD in this country is generally made through a
referral to an educational psychologist, made by a GP, a health visitor, a pre-school
establishment eg nursery school, if under five years old, or the school if of school
age or the parents themselves. An educational psychologist should make an
assessment and provide recommendations as to the child’s individual needs
(Cunningham 2003 website of the South Lanarkshire Council accessed Jan 2004).
8
Again, how efficiently this system works has been described as a ‘post-code lottery’
(McCreadie 2004).
The following is from the Diagnostic and Statistical Manual of Mental Disorders,
Fourth Edition (DSM IV):
DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER
A.
A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)
(1)
qualitative impairment in social interaction, as manifested by
at least two of the following:
a)
marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction
b)
failure to develop peer relationships appropriate to
developmental level
c)
a lack of spontaneous seeking to share enjoyment, interests,
or achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)
d)
lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
"mechanical" aids )
(2)
qualitative impairments in communication as manifested by at
least one of the following:
a)
delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through
alternative modes of communication such as gesture or mime)
b)
in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others
c)
stereotyped and repetitive use of language or idiosyncratic
language
d)
lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level
(3)
restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:
a)
encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in
intensity or focus
b)
apparently inflexible adherence to specific, nonfunctional
routines or rituals
c)
stereotyped and repetitive motor mannerisms (e.g hand or
finger flapping or twisting, or complex whole body movements)
d)
persistent preoccupation with parts of objects
B.
Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:
(1)
social interaction
(2)
language as used in social communication
(3)
symbolic or imaginative play
9
C.
The disturbance is not better accounted for by Rett's Disorder
or Childhood Disintegrative Disorder
(APA 1994 reproduced from the website of the Autism-PDD Resources
Network http://www.autism-pdd.net/)
Chapter 2
Treatment as determined by theories of aetiology.
A major problem facing those whose job it is to both diagnose and then prescribe a
treatment strategy is the fundamental discord over aetiology and subsequently over
appropriate treatment. This comment was made by a group of researchers from the
Netherlands, who summarised the difficulties:
‘Important controversies regarding the precise definitions of autistic
spectrum disorders and the boundaries between the milder
manifestations of those disorders, particularly PDD-NOS (Pervasive
Developmental Disorder), and non-autistic conditions have not been and
cannot be resolved fully as long as there is no known biological cause or
consistent biologic or psychological marker. This includes issues as
basic as whether the autistic spectrum is a predominantly unitary entity
or a collection of more or less similar phenotypes with multiple, varying
aetiologies’. (Willemsen-Swinkles SH, Buitelaar JK 2002).
In the UK (as elsewhere, for example the USA) interventions are primarily based on
educational/psychological models (McCreadie 2004). A range of these interventions
is described later (see Chapter 6 Care and Treatment).
In essence, there is an acceptance of some genetic aspect to the development of
autism, with many people now believing there to be required environmental triggers
as well. (For more on some areas of genetic aspects in autism, see SCIENTIFIC
AMERICAN February 2000 Volume 282 Number 2 Pages 56-63).
It has been found that a substantial number of children diagnosed as being on the
Autistic spectrum have a genetic condition known as ‘fragile x’ syndrome.
On the basis of family and twin studies, there appears to be a genetic
basis for a wide "autistic syndrome." About a quarter of cases of autism
are associated with genetic disorders such as fragile X syndrome or with
infectious diseases such as congenital rubella. (Trottier et al 1999 p 95)
This is quite a different argument from that of the 1950’s and 60’s which revolved
around whether or not autism was the result of psychological trauma experienced by
10
the autistic child due to emotionally cold parenting or an organic pathology arising
from within the child. The current debate usually accepts a fundamental pathology,
and the controversy is over whether ASD is a predestined fate of genetic inheritance
or the result of an externally applied injury to the development of the child, occurring
before or after birth, or perhaps a combination. There are also many debates and
theories as to where exactly and in what form the damage occurs.
‘The existence of the syndrome seems to be the only factor which is
universally accepted yet if it exists there must be a rational explanation
for the coincidence of the strange behavioural, perceptual and
psychological abnormalities which autism entails. If the sequence of
events which may underlie the syndrome can be identified, it will be
possible to work out ways in which we can intervene and either prevent
the syndrome or, at least, ameliorate the problem’ (Shattock and Savery
1996).
Much research is being done on genetics in relation to autism, in particular,
Plowman and Rutter are quoted as being leading experts in this research (for
example, see Rutter 2003). However, as it is looking more and more likely not one
gene is involved, but multiple genes, the relevance of this work is questionable.
Even if it is finally found that autistic children share a genetic make-up, the question
would then be: ‘What can be done?’ Or perhaps ‘So what?’ Like Schizophrenia
(Horrobin 2002), the range of conditions that are all grouped under the heading of
Autistic Spectrum Disorder might make it impossible to prejudge the severity with
which any particular child with the right predisposing genome, possibly made up of
any number of individual genes, might develop the condition. Also, and very likely,
some other triggers, possibly environmental, would have to occur to a child with the
genetic disposition for the condition to develop at all. According to educationalist and
psychologist Michael McCreadie, Head of Education at the Daldorch School for
Autistic Children in Dumfriesshire, Scotland, the Medical Research Council are now
more in favour of research into Autism being focussed on intervention, rather than
genetics. Whether or not this is the case is questionable.
According to Woodward and Hogenboom (2002 p 36)
“In general autism is now firmly viewed as a neurodevelopmental
disorder with a genetic basis. It is clear that autism is a complex disorder
and that no single cause is likely to be found”.
11
One of the leading exponents of biomedical intervention in Autistic Spectrum is
William Shaw, a professor of Clinical Chemistry, Toxicology and Endocrinology,3
based in the USA. The 2002 edition of ‘Biological Treatments for Autism and PDD’
written by Dr. Shaw starts with a chapter entitled ‘Infections, antibiotics, vaccines
and their relationship to autism and ADD: Alternative Treatments’. In this, Shaw
describes the increase in diagnosed cases of Autism that has taken place since the
1960’s. In Iceland, where the data has all been collected at the same centre over
that period, the number of children diagnosed with autism has doubled. Although,
again, any increase in the numbers of cases of autism is being debated, there is a
substantial amount of information available to confirm the trend (Shaw 2002). The
possible reasons for this lie with a range of potential ’co-factors’, environmentally
introduced triggers thought to induce autism in predisposed children.
However, this whole area of possible biomedical factors and interventions in ASD is
highly controversial, as already discussed, not just in terms of what or how, but
whether or not there is any relevance to the overall approach to treating ASD. In
other words, while some educationalists may accept that diet may help some
aspects of some of the symptoms experienced by some autists, there is not overall
acceptance that biomedical factors may be core to the condition and that therefore,
biomedical treatment is essential as an adjunct to psychological/educational models.
This is not true in reverse – that is, exponents of biomedical treatments for autism
are very clear that any such treatment should only be carried out in tandem with
other educational and psychological approaches. For example, the USA-based
organisation, The Autism Research Institute states at the end of an introduction to
their most recent publication on dietary intervention in ASD:
‘It is important to understand that the biomedical approaches described
in this book are most effective when combined with intensive educational
approaches. One of the most important benefits of biomedical
treatments, as many parents mention in their chapters, is that they “open
the children up to the experience of learning. We strongly encourage
parents to pursue educational and biomedical treatments concurrently to
maximise their children’s progress.’ (available www.ari.org accessed
Feb 2004)
3
Dr Shaw has a doctorate in biochemistry and worked for twelve years for Smith Kline
Beecham Clinical Laboratories, specialising in medical testing for toxicology (poisons and
drugs), chemistry, immunology and endocrinology. He is a leading member, with Dr Bernard
Rimland of the Defeat Autism Now! (DAN!) and Cure Autism Now! (CAN!) foundations.
12
So in other words, the biomedical approach in itself will not bring about the kind of
progress looked for in these children, a cure in fact, but may help to open up
developmental possibilities for them. Similarly, in their paper on biomedical
approaches to autism, Shattock et al state:
“There is no conflict whatsoever between these approaches – rather
they are complementary. Using the car as an analogy: removal of the
opioid peptides in the form of gluten and casein from the diet is
analogous to taking the brakes off the car. Appropriate and intensive
education and training is putting fuel in the tank. Both actions are
necessary if the car is to make progress (Shattock et al, p28)
The cynical view might be that these public declarations of a need for a
complementary approach are necessary only for the survival of these areas of
research, but whatever the reason, it is a responsible approach and inclusive in a
way that, if mirrored by all the professions involved, could optimise treatment for all
autistic children.
Several of the alternative theories depend on the occurrence of damage to the gut
wall allowing toxic substances from food to enter the blood stream – damage from
antibiotics, damage from allergens in the diet, reduced levels of phenol sulphur
transferase 4 and secretin, chronic candidiasis. This damage is known as Leaky Gut
Syndrome, a possible cause of many chronic and inflammatory conditions of varying
degrees of severity. This theory of damaged gut wall integrity leading to systemic
damage has been debated by interested groups including complementary health
carers and the ASD community for several decades (Galland 2004).
Chapter 3
The gastric link
Inflammatory Bowel Disease has reputedly long been associated with ASD,
although, obviously, this is an area currently under review. Because the connection
with MMR posited by Dr Andrew Wakefield was first suspected through
investigations into gastric problems experienced by autistic children, whether in fact
autistic children are more prone to digestive problems than the rest of the population
4
Deficiencies in PST, which lines the intestinal tract, have been proposed as possible cause
of increased ‘leakiness’ (Waring 1993). According to information from the Autism Research
Unit, UK, parents of children use Epson salt baths for their children to help to compensate for
the lack.
13
is being disputed, apparently in an attempt to disprove any association between
autism and the vaccine (Taylor et al 2002). However, that bowel disease is an
associated factor common in autistic children has been backed up by research in
other countries. For example:
‘Recent clinical studies have revealed a high prevalence of
gastrointestinal symptoms, inflammation, and dysfunction in children
with autism. Mild to moderate degrees of inflammation were found in
both the upper and lower intestinal tract. In addition, decreased sulfation
capacity of the liver, pathologic intestinal permeability, increased
secretory response to intravenous secretin injection, and decreased
digestive enzyme activities were reported in many children with autism.
Treatment of digestive problems appears to have positive effects on
autistic behavior. These new observations represent only a piece of the
unsolved autism "puzzle" and should stimulate more research into the
brain-gut connection.
Horvath K, Perman JA 1998
And again, from the same team in Maryland, USA:
‘Recent publications describing upper gastrointestinal abnormalities and
ileocolitis have focused attention on gastrointestinal function and
morphology in these children. High prevalence of histologic
abnormalities in the esophagus, stomach, small intestine and colon, and
dysfunction of liver conjugation capacity and intestinal permeability were
reported. Three surveys conducted in the United States described high
prevalence of gastrointestinal symptoms in children with autistic
disorder. Treatment of the digestive problems may have positive effects
on their behavior.
Horvath K, Perman JA 2002
A new study recently published, however, suggests the number of children showing
signs of gut pathology and with traces of the measles virus in their gastrointestinal
tract, is statistically smaller than perhaps thought. Wakefield, at Visceral, makes this
comment:
‘It has become increasingly clear in recent years that autism is an
umbrella term for a collection of closely related disorders, whose
causation is likely to prove as varied and complex as the autistic
spectrum itself…What the new study does suggest is that the proportion
of children with bowel disease, measles infection and autism may be
small, probably no more that 10% of diagnoses’ (Wakefield 2004 [online]
available at www.visceral.org.uk accessed Jan 2004)
14
However, ten percent is still a significant number and refers to those autistic children
presenting with all three factors, ie those who have traces of the measles virus
embedded in their guts. What the percentage of children with autism and bowel
disease, without the measles connection, remains to be found. Some researchers
have found that 25% of all children diagnosed as having Pervasive Developmental
Disorder have at least one chronic GIT symptom (Malloy CA et al)
Certainly the theory of a connection between the digestive system and symptoms of
ASD is supported in many areas by many different people. A list of nutritional
discrepancies found in ASD children, including those thought to arise from
gastrointestinal disturbances, is included at the back of this paper as Appendix 1
along with a corresponding list of interventional strategies, proposed by the Autism
Research Institute (USA). There is also an overview of available information in the
form of published work on pharmacological drug intervention in ASD. This list of
references is presented as Appendix 2.
Staff at the Autism Research Unit based in the UK at the University of Sunderland
support theories of gut pathology in autistic children. The whole theory of Leaky Gut
Syndrome leads to several possible outcomes in terms of both cause and
symptoms, some of which are discussed later in this chapter.
“The research undertaken at the Unit subscribes to the theory that
autism is a metabolic disorder, whereby certain biologically active
peptides and other compounds, derived mainly but not exclusively from
dietary gluten and/or casein are not broken down correctly, and
because of additional problems with the permeability of the gut, are
present in the blood in much greater quantities than might normally be
expected. The presence of these compounds in the blood would mean
that they would tend to be collected in the kidneys and then excreted in
urine; hence, the content of urine would be to some extent, be reflective
(sic) of the content of the blood (Shattock et al 2002)
Shattock et al go on to describe the findings of the analysis of a large number of
urinary samples (over 1500) and the researchers’ resultant conclusions. Profiles are
prepared using High Performance Liquid Chromatographic analysis of the urine of
autists and some of the associated disorders. Over some years, the methods have
been refined and the unit has been responsible for the analysis of over 1500 urine
samples, some of which have been from people with no clinical abnormalities and
which have been used as controls.
15
“One very major factor in permitting a more meaningful evaluation of
these profiles has been the elucidation of the structure of two of the main
components which are found in these profiles. The first is bovinecasomorphin …. The other …. has only recently been shown to be trans
Indoloyl-Acriloyl Glycine (tIAG) (7). …
The relevance or role of this compound are unclear but its association
with autism and associated disorders appears unequivocal. … our
considered opinion is that the compound represents the detoxified
version of a parent compound which could have profound effects upon
the permeability of membranes throughout the body.
The presence of this detoxified version would suggest, but not prove, the
presence of the original active form and this assumption of the
permeability of membranes, and in particular those of the gut lining and
the blood brain barrier (BBB) is central to our interpretation of the
profiles we have obtained. IAG has many but not all of the properties of
a peptide…The compound is, therefore peptide like or “peptoid” in
nature. For the purposes of our interpretation, we assume that the other
peaks which appear in our profiles…are derived from the incomplete
breakdown of food” (Shattock and Savery)
The work of Shattock and his colleagues has continued to support both the theories
of Leaky Gut and the opioid excess theory of autism. In this theory, which was first
proposed by researchers in Norway (Reichelt 1991), it is proposed that proteins
from gluten and casein in the diet are leaking into the blood-stream in the affected
child through a damaged gut wall, crossing the blood-brain barrier and acting like
opiates in the brain. As the peptides interfere with neurotransmission in all the major
parts of the Central Nervous System, this could affect: perception (vision, hearing,
taste etc), cognition, behaviours (causing the stereotypies often displayed by
autists), mood, emotions and if occurring at a crucial time of neurological
development, ie when the organism is very young, fundamentally affect CNS
development (Whiteley Conference on Biomedical Interventions Newcastle March
2004).
A helpful description of this theory is found in Karen Seroussi’s book “Unravelling
the Mystery of Autism and Pervasive Developmental Disorder” (2002). Seroussi tells
how she struggled to make sense of her young son’s deterioration and her
determination to find answers to both the reasons for his illness and solutions to it.
Her own story has ended happily, with her son being removed from the autistics
register. Not all dietary interventions are so successful, but there are many reports
16
of improvements being made through diet with early intervention being stressed as
being crucial to successful outcomes 5 (Knivsberg et al 1990)
“The similarities between the symptoms of autism and the known effects
of the endogenous opioids, in particular beta endorphin, was first
described by Panksepp (8). Reichelt (9) proposed that these opioid
substances may be derived from incomplete breakdown of certain foods
and, in particular, gluten from wheat and some other cereals and casein
from milk and dairy produce. Our own studies have provided supportive
evidence for these ideas (1 and 4). … Whatever the precise nature of
the mechanisms involved, the consequence would be enhanced opioid
activity within and without the CNS.
…In essence, we interpret the presence of the IAG as being a
significant, and to some extent, a quantitative, indicator of leakiness of
membranes and, in particular, those of the intestinal wall and the blood
brain barrier. We interpret the levels of other peptoids as being indicative
of the levels of potentially biologically active, food derived, materials in
the urine and, by assumption, the blood supply to the body as a whole.
(Shattock et al Sunderland 2002 p2) 6
Those promoting the implementation of dietary treatments such as a gluten and
casein-free diet will state they are not promoting a cure, but something that may
help to alleviate symptoms and believe there to be other factors involved as well, for
example, a history of meningitis or encephalitis, complications at birth and others.
(for example see ARU website available at http://osiris.sunderland.ac.uk/autism/). It
is important to point out, as do those promoting dietary intervention such as the
gluten and casein-free diet that any such approach should be taken only with
professional support. There have been reports that low levels of calcium in children
with autism on such diets have caused eye damage and pain, to the extent that the
5
Knivsberg et al 1990 carried out behavioural studies using gluten and casein-free diets.
Observed changes: social attention reduced emotional outbursts, language/communication
skills improved, decrease in epileptic fits. Follow-up 4 years later: continued improvement but
only if on diet
6
For examples of references from Shattock et al see:
Knivsberg, A-M., Reichelt, K.L., Lind, G. & Nodland, M., 1991. Probable Etiology and
Possible Treatment of Childhood Autism. Brain Dysfunction 4(6) 308-319
Panksepp, J., 1979. A Neurochemical Theory of Autism. Trends in Neurosciences 2 174-177
Reichelt, K.L., Hole, K., Hamberger, A. et al, 1981. Biologically Active Peptide-Containing
Fractions
in
Schizophrenia
and
Childhood
Autism.
Advances
in
Biochemical
Psychopharmacology 28 627-643
17
children have ended up ‘poking their own eyes out’ (Shaw 2002). Obviously it is
vitally important to be aware of the potential for serious problems before starting on
these diets. (For a reference on evidence of intestinal permeability, see DiEufemia,
P., et al 1996 Abnormal Intestinal permeability in Children with Autism. Acta
Paediatrica 85 1076-1079 from Shattock et al 2002)
The connection of digestive problems to behaviours in autistic children is important
in a number of ways. It is a vital part of the debate on aetiology, it is obviously also
hugely important in terms of treatment. (see chapter on ‘The herbalist’s approach’).
It is highly controversial in relation to two areas, one being the potential connection
as first publicised by Dr Andrew Wakefield and his research team at the Royal Free
Hospital in 1998 with the MMR vaccine and the other being a perception by parents
that their children’s symptoms are dismissed by mainstream health care
professionals (see below). It has to be stated that there have been no double-blind
randomised placebo controlled trials to date demonstrating the efficacy of any of the
biomedical approaches to treatment as even Shattock et al will admit. There are
problems in formulating such trials, both practical and ethical, but in order to gain
mainstream acceptance by medical and psychiatric services, some kind of solution
to this will have to be found otherwise it will be difficult to develop such treatments or
administer them fully. This lack of ‘science-based evidence’ is also true of the work
on essential fatty acids and their role on ADHD, Dyslexia and ASD, discussed later.
Despite this, though, there is still a lot of support for these theories.
Chapter 4
MMR
Part of the controversy and complex nature of autism is that it has, in the last few
years, become the focus of hot public debate and political manoeuvrings. This
resulted mainly from an announcement by Wakefield and colleagues, of the
University of London Royal Free Hospital Inflammatory Bowel Disorder Study
Group, in 1998, as to their findings in some autistic children and the subsequent
implications for the future of the MMR vaccination programme in this country and
abroad (Wakefield et al Lancet 1998). Part of the controversy is due to Wakefield’s
original findings being only at a level at which he and some colleagues suggested it
might be worthwhile pursuing further investigation and they did not originally claim to
have found anything definitive. They apparently also perceived a value in listening
to, and taking seriously, the subjective impressions of parents of autistic children
18
and their concerns as to a possible link with the MMR vaccine. This, in itself, does
not appear to be the norm. However, whatever the rights and wrongs of the
situation, feelings run incredibly high over the subject, and it is apparent from recent
newspaper headlines there is some effort being made to discredit Dr Wakefield, with
media reports feeding into the personal anger against him felt by many. In all this, it
is difficult to see where the needs of autistic children and their carers are being
placed.
Effects of the MMR debate.
Developments around the MMR debate have great ramifications for those children
suffering the disorder and their carers. This is important because where parents may
feel their opinions are not listened to, the MMR debate seems to be adding to this.
Not only are parents who perceive their children to have been damaged by the
vaccination being told they are wrong, one medical consultant who has at least
worked seriously at trying to treat gut disorders in a small number of children with
ASD is being vilified in the press. As parties from different sides of the debate
position themselves in the battle to uphold, or discredit, Wakefield’s findings, all
aspects of research into ASD, in this country, and its treatment, appear to be
becoming fodder for the battleground. In the meantime, those about whom the
debate revolves continue to deal with the pain and frustration that goes with
suffering from or caring for a child with, ASD, but not always receiving the kind of
treatment and support they most need.
There are particular aspects to this. For example, two articles were published in
2002 in the online British Medical Journal (BMJ.com) on autism and related issues.
One was a report on a retrospective population study with its stated aim being to
“investigate whether measles, mumps and rubella (MMR) vaccination is associated
with bowel problems and developmental regression in children with autism…”
(Taylor et al Feb 2002).
Some examples of the responses to the article include comments such as:
“Taylor finds no increase over the 20-year period in the prevalence of
autism and bowel disease. Quite the contrary, he hints that bowel
disease is caused by putting these children on ‘unusual diets’ and that a
small group of parents may have ‘changed’ accounts of their children’s
history on learning of the MMR publicity. This is an amazing, not to say
offensive, suggestion…”,
19
“The timing and content of the recent paper…has all the hallmarks of a
hastily constructed piece of work, in which the results and conclusions
had already been decided before the research was even conducted…”
and,
“…a great deal of time, effort and public money has been spent on
epidemiological studies … trying to prove to the same public that their
children are safe from these vaccines. As this message has not been
easily swallowed, and the arguments and counter arguments have now
reached fever pitch, I am ashamed to see health representatives
become increasingly angered on television, dare I say, even
irrational…For heaven’s sake – what has happened to common sense
and compassion?”
The other eBMJ article from 2002 found is titled “Relation of childhood
gastrointestinal disorders to autism: nested case-control study using data from the
UK General Practice Research Database” by C Black et al. It is probably worth
noting that this research was in part funded by a group of pharmaceutical
companies including GlaxoSmithKline, Johnstone &Johnstone and several others.7
It purports to “assess whether children with autism are more likely to have a history
of gastrointestinal disorders than children without autism”. The piece concludes
there is no evidence that children with autism are more likely to have ‘defined’
gastrointestinal disorders before their diagnosis of autism. The authors add that no
temporal association was found between the MMR vaccination and the onset of
gastric symptoms in children with autism.
It is probably worth reproducing here in its entirety one response, because it
demonstrates well the outrage felt by some parents in relation to these papers:
“Given that there are now several laboratories that have biopsy results
suggestive of autoimmune gut pathology in a subset of children with
autism, it will take an extremely strong set of data to deny that such
pathology exists. By ignoring a source of bias, the article by Black et al.
does not convince. It is assumed that autistic and non-autistic children
with gut pathology will present similarly and be diagnosed and
documented equally well. Given the difficulties that individuals with
7
Current rage around the apparent revelation concerning the source of funding for
Wakefield’s team’s original research appears to be ignoring that most research has to be
funded from somewhere and presumably will be funded by those whose interests are most
bound up in the subject being researched. This in itself does not make the research being
carried out, ‘bad science’.
20
disabilities have in obtaining treatment for other health problems this is
not likely. The difficulty is exacerbated for individuals with developmental
disabilities where communication and comprehension raise additional
barriers.
A typical child with gut problems will be brought to surgery with the child
able to complain of a sore tummy and other symptoms readily
interpretable by parents and physicians. A communication-limited,
possibly non-verbal, child with autism may be brought in with complaints
of prolonged and agitated waking in the night, extreme self-limiting diet,
repetitive bouncing and jumping, flapping, yelling, self-abusive behaviors
such as punching himself in the gut or head-banging, frequent foulsmelling fecal incontinence, or ruminating behaviours. He will almost
certainly not say “my tummy hurts.” These behaviours are all likely to be
dismissed as part of autistic behaviour even when parents specifically
raise the issue of gut pathology.
As a health professional with a non-verbal autistic son I am not
intimidated or easily shut up by physicians. Yet several years of records
kept by two pediatricians fail to document the gut pathology I complained
about - long before there were published articles on the topic. When
another practitioner was willing to consider that my son’s problems were
not “just autism” we began gut treatment. My son had most of the
behaviours listed above. Treatment decreased them greatly. Perhaps
most dramatically my son began sleeping through the night within four
days of starting one medication. Repeated trials of withdrawing
treatment and restarting have confirmed the pattern and the link
between gut pain, sleeping problems and other distress behaviours. Yet
his chart data for several years would have been considered evidence of
no gut pathology.
(Jan Perkins, Assistant Professor, Central Michigan University, 48859
‘Rapid responses’ eBritish Medical Journal [online] accessed Dec 2002)
Other responses to this paper by Black et al pointed out that other research has
shown there to be evidence of gut pathology in some children with ASD (Finegold S
et al. 2002). In the meantime, Wakefield continues to carry out research into the
causes of a particular kind of bowel pathology found in some autistic children. It was
this peculiar form of inflammation of the bowel, along with traces of the measles
virus embedded in the lining of the gut, in particular a form of the virus consistent
with the virus used in the MMR vaccination, that originally led to the controversy,
leading to Wakefield and his team being denied any further funding in the UK to
pursue this line of research.
‘This disease (‘a novel and characteristic inflammatory disease of the
intestine) appears to be associated with raised blood ammonia, intestinal
dysbiosis (overgrowth of harmful bacteria) and cognitive improvement in
response to orally-administered, luminal-acting antibiotics, as with
hepatic encephalopathy and D-lactic acidosis in patients with short
21
bowel syndrome. As such the intestinal disease in children with autism
may be the source of toxic damage to the brain.’ (Wakefield at Visceral
available at www.visceral )
Wakefield has since left the UK to work as Director of Research with a charitable
foundation called Visceral, an organisation established specifically to study the
aetiology of bowel disease in autistic children
According to educational psychologist Ken Aitken8, recent research and our current
understanding of autism and its aetiology is consistent with a theoretical MMR
connection. There have been a number of papers published since Wakefield’s first
statements, some of which support his original findings. Most recently, in response
to the results of yet another published paper, Visceral have posted this up on their
web-page:
‘A population based study of MMR Vaccination and Autism’
Meldgaard K, Hviid A, Vestergard M, Schendel D, Wohlfahrt J, Thorsen
P, Olsen J, Melbye M
‘does not demonstrate that there can be no connection between the
MMR and autism….rather emphasises the fact that MMR cannot be the
cause of all autism a viewpoint with which all members of the team at
Visceral would heartily agree.’ (Wakefield, A., available at
www.visceral.org accessed Jan 2004)
In contrast to the painful experiences, arriving from lack of understanding on the part
of the medical professionals involved, as quoted above, this following passage is
taken from a publication written by a member of the anthroposophical Camphill
Communities organisation:
“…as a parent, carer and doctor it is vitally important to be aware of the
possible pain and discomfort that gastrointestinal problems can
cause…discomfort, sleeping problems and aggression”
(Woodward and Hogenboom 2002 p 43)
8
Kenneth Aitken is a Clinical Psychologist who works in Glasgow, for the NHS, and privately
in Edinburgh. He is listed on the DAN! website as being the only DAN! practitioner in
Scotland, DAN! being the USA-based research organisation co-founded by Dr Bernard
Rimland, who is quoted in this paper. Aitken has done a great deal of research into autism
and its causes and co-wrote "Children with Autism: Diagnosis and Interventions to Meet
Their Needs" with Colwyn Trevarthen, author of a forward to “Autism: A Holistic Approach”
by Woodward and Hogenboom (2002).
22
This alternative approach to the issues involved, including those of gut pathology
and the distress it causes as demonstrated by the authors quoted above is
discussed more fully later in this paper, especially in relation to what herbal
medicine may offer in the treatment of these children and their carers.
As Wakefield himself describes above, the combination of bowel pathology, with
traces of the measles includes only a possible ten percent of autistic children. This
means that even if it were found that some children have been damaged by the
MMR vaccine, a large percentage of autistic children have not. This leaves the
question of what other causes there are.
Additionally, even if the MMR connection were to be accepted, as many children
have the MMR vaccine administered and do not go on to develop regressive autism,
there has to be at least one or, most probably, some other ‘co-factors’.
Chapter 5
Other possible factors
1.
Mercury
A substantial amount of work is being carried out on the potential toxic effects of
mercury. According to Visceral, the immune-suppressant effects of the mercurybased compound thimerosol, may be a key to why some children apparently react
so badly to the MMR. Thimerosol (ethyl mercury) is used as a preservative in some
childhood vaccines, although this is now being phased out. According to Wakefield
at Visceral (p10)
‘Both organic and inorganic mercury – the effects of which are
qualitatively similar – have profound, toxic effects on the immune
system…. And have been linked to allergic sensitisation and
autoimmune disease.
The immunosuppressive and immunomodulatory effects associated with
mercury exposure are accompanied by increased susceptibility to
challenge with infectious agents…subtoxic doses of mercuric chloride
induce an autoimmune syndrome characterised by the expansion of TH2
cells, IL-4 production by splenocytes and lgG1 and IgE production
(Bagenstose et al 2001 from Wakefield at Visceral, available at
www.visceral accessed Jan 2004) ’
The American Journal of Preventative Medicine published the result of research in
2003, that showed increases in reported cases of autism to have taken place in all
23
three areas studied – California, Sweden and Denmark, although vaccines
containing thimerosal were removed in Sweden and Denmark in the early 1990s
(AJPM 2003;25:101-6). The possible implications, that the use of vaccines
containing thimerosol has not had a part to play in the increased numbers of autistic
children, remains to be validated. Again, the use of thimerosol in vaccines may be
just one of several factors contributing to immunological and neurological damage to
the development of affected children.
This possible connection with mercury is being fairly robustly disputed, but mercury
is no longer included in the list of ingredients for the UK MMR vaccination. However,
mercury, in the form of thimerosol, is still used in a number of childhood
vaccinations, including the Diptheria, Tetanus and Pertussis (DTP) vaccine.
One thing that is interesting about the immune-suppressant effects of mercury
applies to the anecdotal evidence of parents whose children suffer a series of
infections – ear infections for instance, leading to repeated courses of antibiotics.
Small children may go through a period of being vulnerable to infection while their
immune systems are developing, a period that naturally comes to an end as the
child’s immune system ‘kicks in’. If the mercury content in many of the childhood
vaccines is causing an immune system suppression or distortion at a key stage of
the infant’s development, then it may be one of the trigger factors in the regressive
autism scenario, or possibly even in a range of developmental/learning disorders, in
that very immunosuppressive action. Instead of naturally learning to cope with
invading organisms and to dispel them, the organism starts to respond in a selfdamaging way – or, as Wakefield proposed, in some cases just not dispel the
organism at all, leading to further damage in low-level chronic inflammation in the
gut, for example. So what we have, in fact, is a genuine multifactorial situation
where the immune-suppressant effect of the mercury alters the organism’s response
to a vaccination and also helps to cause immune-lowered responses to invading
micro-organisms, leading to repeated doses of antibiotics, leading to GIT damage
and gut-wall problems, leading to toxic doses of glutein and caseine proteins getting
into the bloodstream, yeast and bacterial overgrowth…etc, etc.
In 1999 Visceral (Wakefield) wrote:
‘At the level of the immune response, the newborn tends towards a TH2
response to pathogens and gradually shifts towards a TH1 response
24
with age [this model is a simplification of T-lymphocyte function, that
Wakefield’s team uses as a ‘template’ for the purposes of
demonstration]. If this transition does not take place appropriately, the
infant is likely to be at greater risk of mounting aberrant immune
responses in later life, as seen in patients with allergies. Given that,
under normal circumstances the age of this transition will be different for
different children, it seems inevitable that a ubiquitous viral exposure of
all 15-month-old children could induce an immune response that is
consistent with the individual dynamics of this TH2-TH1 transition’.
(available online at http://www.visceral.org.uk/index.php accessed Jan
2004).
In other words, a blanket vaccination programme that targets all 15-month-old
babies is inevitably going to produce mixed response, when the immune system
both develops at a different rate in each individual and is subject to different
stresses, such as the mercury content of a previous vaccination or the amount of
antibiotic therapy the child has previously received. Visceral makes the point as well,
that their team put forward the proposition above about altered immune response in
individual children before they knew about the mercury content of some of the
childhood vaccinations.
2.
Essential Fatty Acid dysfunction
The role of essential fatty acids in neurological functioning is being researched in a
number of areas, including that of the effect of EFA supplementation on Attention
Deficit Hyperactivity Disorder (ADHD), Dyspraxia and Dyslexia. Again, while those
involved with such research have claimed some very interesting and positive results,
and their findings have been publicised in the media, or through conferences, as yet
the research has not yet been accepted and published by any of the main peerreviewed medical journals. For example, the Durham Trial, which tested the effects
of EFA supplementation on children with learning difficulties at a number of schools
in the Durham area was used for a television documentary, but has not been
published. According to Dr Madeleine Portwood, a Senior Educational Psychologist
who works for the education services in Durham, and who was involved in the trial,
only 40% of the children improved, but those that did, improved significantly in
attention levels and cognitive abilities. Most of the work in this area so far has been
in relation to children with ADHD and Dyslexia, however, as previously stated, many
professionals believe ADHD, Dyslexia, Dyspraxia and ASD to be part of an overall
picture. Studies carried out at Purdue University in the USA (Stevens et al
1995/1996 from Richardson 2002) showed that children with ADHD:
25




Were less likely to have been breastfed (breast milk contains
HUFAs AA and DHA while most formula milk does not)
Were more likely to suffer from allergies
Showed clinical signs of EFA deficiency such as excessive thirst,
frequent urination, rough dry skin and hair, soft or brittle nails etc
Had reduced blood levels of some HUFAs especially AA, EPA
and DHA, but not their precursors 9
(Richardson AJ 2002)
There is, apparently, much debate within the circle of those working with EFAs as to
which of the fatty acids are the important ones ie Dihomogamma-linolenic acid
(DGLA), Arichidonic acid (AA), Docosahexaenoic acid (DHA) or Eicosapentaenoic
acid (EPA). It is generally assumed that as AA is fairly prevalent in the western diet,
in itself it’s not likely to be a problem and that the two to supplement are DHA and
EPA, with DHA being the key. It does seem to be generally agreed that it is
important to retain a ratio of 2:1, Omega 6: Omega 3 in the diet and that modern
western diets tend to be very high in Omega 6 but low in Omega 3 (Portwood 2004).
(AA and DGLA are both from the Omega 6 series and DHA and EPA are Omega
3s). There have been a number of studies both supporting and refuting the effects of
supplementation by some EFAs, for example Burgess 1998, which found that
supplementation with EPA, DHA, GLA and AA changed the blood fatty acid profile of
ADHD children, with an associated reduction in ADHD symptoms. Another large
controlled trial using supplementation with pure DHA was completely ineffective in
the treatment of ADHD (Voigt et al 2001 from Richardson 2002). This of course
does not show that supplementation with EFAs is ineffective, just that DHA on its
own does not work.
However, as this discussion/argument is likely to go on for some time yet, perhaps
the important thing to work with for those caring for autistic children is the general
principle of there being a need to ensure adequate levels of EFA’s in the diet, with
an appropriate balance of Omegas. Certainly, deficits in EFA (along with deficits in
zinc, magnesium and molybdenum) are claimed as being common to people with
Autism, and ADHD (Hooper 2004).
9
This ties in with other theories relating to EFA and their role in different conditions. David
Horrobin wrote in his book “The Madness of Adam and Eve” his interest in the theory some
people, probably within a range of genotypes, have difficulties synthesising the required
EFAs from their precursors and that a deficiency of these EFAs in the diet (ie from fish oils)
will result in a number of pathologies, including the development of symptoms of
Schizophrenia (Horrobin 2002).
26
Again, as with all these interventions, it is important to note there has to be a level of
caution. According to Dr. Portwood, companies promoting fish oils for the treatment
of autism and learning problems have a responsibility to promote their products in
context, and there is at least one such company promoting the idea that ‘the more
the better’. More supplementation does not necessarily mean better responses and
so dosage is very important – excess amounts can actually cause deficits, according
to Dr. Portwood and from her own tests (Portwood 2004). Also, these fish oils are
prone to oxidisation and so must have sufficient quantities of Vitamin E included for
stability and of course the oils have to be screened for heavy metal toxicity.
Additionally, too high levels of Vitamin A may be toxic and therefore high doses of
fish liver oils are best avoided (Richardson 2002). An optimum combination has
been formulated that includes Evening Primrose Oil, Fish Oils and Vitamin E, with a
number of companies producing good quality oil supplements to this formula. One
final note of caution – studies have shown EFA supplementation to reduce the
numbers of epileptic fits in sufferers. However, there have been reports of seizures
happening in children with epilepsy on ceasing supplementation (Shaw 2002 and
Portwood 2004).
3.
Gut Flora
Other theories of gut pathology involved include the overgrowth of bacteria or fungi
and generally altered gut flora in children with ASD. According to Dr Shaw (2002),
for example, the probiotic control of overgrowth of a bacteria, Clostridium difficile,
one of a large number of Chlostridia bacteria found in the GIT, has been shown to
be the most successful biomedical therapy (to the date of publication of the 2002
edition of his book Biological Treatments for Autism and PDD). Other researchers
have also found evidence of abnormal gut flora (Feingold SM et al 2002). The
number of children with autism being reported as suffering from signs of chronic
candidiasis also supports the theory of leaky gut (online information available at
www.autismresearchunit.org 2004). This is an area widely discussed in books,
including Seroussi’s (2002) and on internet sites.
This altered gut flora is consistent with other biomedical theories – especially that of
Leaky Gut Syndrome, as damage to healthy gut flora is perceived to be part of the
aetiology of the problem. This damage is possibly caused by repeated course of
antibiotic drugs. Where there is an intrinsic intolerance to, for example, casein
proteins, in the very young child, recurring mucus membrane inflammation leading
27
to ear or throat infections then treated with antibiotics, it is not difficult to see how the
damage might occur.
4.
Other theories of Metabolic Dysfunction
There are a large number of areas of research in terms of physiological problems in
ASD children. These include the role of secretin and pancreatic dysfunction,
problems with sulphation levels and possible causes for reduced excretion of heavy
metal residues from the body experienced by some autistic children. There are also
many reports of nutritional deficiencies in ASD children:
Nutritional deficiencies: …ARI has received many hundreds of such
letters from parents describing remarkable improvement in their children
as a result of using these supplements. Of all the biomedical treatments
for autistic individuals, including drugs, the use of vitamin B6 with
magnesium has received the most scientific support (21 positive
research studies to date, including 11 double-blind controlled
experiments). Although research on the use of DMG to treat autism has
been sparse, there is much evidence showing that it is a very safe and
often
highly
effective
nutritional
supplement’
(from
www.autismresearchinstitute USA)
In fact, none of these theories is contradictory and many of the solutions on trial can
be used together, and in fact are (see: the Sunderland Protocol). What they all have
in common is firstly an acceptance that what is being dealt with in this condition is a
fundamental pathology involving metabolic processes in the system and producing a
number of problems of deficiency or excess. The other thing they have in common is
the metabolic pathways in which they are involved – in other words, they could
theoretically all be manifestations of different stages of the same metabolic
dysfunction (Hooper 2004). The biochemistry of these metabolic processes is
probably not of relevance here, except in so far as these theories exist and some
treatments addressing some of these problems have had some positive effects on
some autistic children. There is at least a suggestion that these theories may have
some basis in fact and any health professional working with ASD children should be
aware of them. (for an overview of available information on nutritional and metabolic
disorders in children with ASD, see Appendix A)
Chapter 6
Care and Treatment
A key part of this debate is what is on offer in terms of care and treatment for
children diagnosed as being on the autistic spectrum. Parents who perceive their
28
own beliefs and insights into their child’s condition as not being taken seriously have
to either accept what is offered as being the only possible option despite any
misgivings, or seek alternatives. For many parents, the answer may well be to do
both, to accept the psychological/educational interventions offered while looking into
dietary and other biomedical approaches themselves. How successful this is likely to
be will of course depend on all the parties involved complying and how likely this is
to happen is uncertain (for more, see Chapter 7 on The parent’s perspective).
Children diagnosed as having some form of ASD should be offered some level of
treatment. A child diagnosed with any learning difficulty requiring special education
in law must be given adequate and efficient educational provision by its local
authority. Local authority statutory provision for children and young people (0 – 19
years) includes psychological services, including that of educational psychologists.
Children suspected of having learning difficulties will be referred to an educational
psychologist by a community medical officer, or GP, health visitor, pre-5 support
teacher, a pre-school nursery or kindergarten, speech or language therapists or
possibly parents. At school age and up, it is usually the school that refers on. It is
the Educational Psychologist’s job to assess the child’s needs, theoretically in
collaboration with all the people involved in the child’s care – parents, GP, school or
nursery, physiotherapist, occupational therapist, speech and language therapist and
so on.
Obviously, what is meant by ‘adequate and efficient provision’ could be open to
interpretation and dependent on resources available. The educational psychologist
themselves may offer a range of approaches, depending on the psychologist and
the case. For example, Applied Behavioural Analysis may be used, or Cognitive
Behavioural Therapy, or a combination, including other psychotherapeutic
approaches such as family counselling and so on.
Included in this research is an interview held with Michael McCreadie, an
educationalist and psychologist in charge of education at the Daldorch School
(residential), Dumfriesshire, Scotland, for children with ASD. This interview was held
in order to gain a fuller picture of the mainstream educational work done with ASD
children. (The full interview with Michael McCreadie is available as a separate
document). However, according to McCreadie, in a best-case scenario, an early
intervention system is established, with collaboration between the Educational
Psychologist, educational provision and the health-care professionals. For example,
29
according to the website of S. Lanarkshire Local Authority, a pre-school-age child
referred to an Educational psychologist and assessed as having ASD will have a
pre-SCAT or Pre-School Community Assessment Team meeting arranged for all the
people or agencies involved, including the child’s parents. However, at worst, the
problem is not picked up early on, or even when it is and the child is assessed, the
educational services offer no provision until the child is older. In fact, the provision of
support for these children and their carers is described by some as a ‘post-code
lottery’. After the Autistic child reaches 19 years, according to McCreadie the ‘really
appalling state of post-school provision kicks in’.
On being asked whether the school supports theories of casein and gluten
intolerance, McCreadie responded that he did not know enough about them to
comment either for or against, although he stated he was open to the ideas behind
them. In practise, while a few of the children residing at the school ware on gluten
and dairy-free diets at the request of their parents, McCreadie felt this just made his
work harder, the educational system he uses requiring the receiving of ‘rewards’ in
the form of food or sweets. This example is an illustration of how difficult it must be
for parents anxious to pursue alternative avenues of treatment for their children, or
even who have seen the positive effects of a change of diet on their children, to
implement these, when even the professionals who in theory might support them, in
practise find the measures ‘impractical’.
This passage is included in the website on Autism for the South Lanarkshire LA:
‘…In recent years there have been many new intervention approaches in
the field of autism, including dietary, drug, sensory, behavioural and
educational. Some have been devised for the child with autism taking
account of the triad of impairments while others have drawn on good
practice from working with children with learning difficulties. Other
programmes have their origins in a particular theory relating to autism.
The diversity of intervention programmes reflects not only the range of
understanding that practitioners have of autism but also the diversity of
responsiveness to intervention of the child with autism. As a result there
is no single programme that will suit every child or every family situation.
Many parents draw on aspects of more than one intervention
programme and develop their own to suit the very specific needs of their
child. The financial implications of the programmes have not been
included but many are costly (Cunningham 2003 [online] available at
www.southlanarkshirecouncil accessed Dec 2003).
Although GPs are included in lists of professionals involved in the care of autists, the
majority of interventions in autism in this country are psycho-educational, based on
30
a range of behavioural approaches. Medical support is mostly based on drug
therapy involving a limited range of pharmaceutical products and is rarely given.
What is also interesting about the information on the LA website above is just how
many interventions, with widely varying approaches and methods, are theoretically
available. The website includes this passage, under the heading of ‘Interventions’
and in the same category as ABA, TEACCH etc:
“THE BIOMEDICAL APPROACH
DAN! (Defeat Autism Now!), A group of medical practitioners from
around the world, have the joint belief that ASD are primarily medical
disorders with the typical impairments recognised in autism being byproducts of the physical illness. The DAN! protocol is a system for
identifying and treating what these doctors believe to be the metabolic /
biochemical causes of autism and related disorders. The recommended
treatments include dietary changes, supplementation, anti-fungal,
probiotic and anti-viral treatments amongst others. Parents with varying
degrees of involvement often endorse them. These emerging treatments
are still experimental and highly controversial. Mainstream medical
professionals have little knowledge or experience of them and are
therefore often resistant to supporting such an approach”. (Cunningham
2003 [online] available at www.southlanarkshirecouncil)
There has been a fairly recent meta-analysis carried out on the various psychoeducational approaches used world-wide (by Fiona Knott of Reading University),
with a system known as TEACCH – the Treatment and Education of Autistic and
related Communication-handicapped Children – being the most evaluated. This may
be, of course, because it lends itself well to evaluation. It is also described by the
USA National Institute of Mental Health as the ‘most effective statewide program in
this country’ according to TEACCH’s own website. TEACCH was first developed by
Schopler and Mesibov of the School of Medicine at the University of North Carolina
(USA) thirty years ago and has evolved over the decades. There is a substantial
amount of information available on this particular method, with opinions against as
well as for the method (TEACCH is strongly criticised on the website of the USA
Autism Research Unit for example) but a key point of TEACCH is that the
importance it places on the role of the parent as ‘co-therapist’. The basic principles
that underline their approach are based on developing an understanding of autism
by observation of the child rather than through professional theories. This has led to
two main strategies being developed to support the education of the child with
autism: improving skills by a structured teaching approach which uses picture cues
and by modifying the environment to accommodate deficits experienced by the child
with autism.
31
Other systems of educational/psychological intervention include:
1. HIGASHI: this is based on functional and directional movement. It has schools in
Tokyo and Boston, USA.
2. SONRISE: Developed by Dr Kauffman a father of a child with autism. The
programme makes the assumption that fear prevents a child with autism from
communicating and interacting and is based on the idea of the parents ‘getting down
to the child’s level’, also working on family dynamics and mother/child interactions.
The parents are encouraged to become involved in their child’s ritualistic and
repetitive behaviours to show their child that what he /she does is of interest to
them. By engaging their child through dynamic interactive play communication and
social skills can be taught. It is a child centred approach.
3. Picture Exchange Communication System (PECS): this uses a rewards system.
This system is the use of pictures to indicate needs or wants. Pictures can gradually
be changed to words as an individual learns to read, so this can be an excellent
communication device. PECS is reportedly often a stepping-stone to speech and is
the system used by Michael McCreadie at the Dornoch Residential School for
Autistic children (A full account of the interview with Michael McCreadie is available
as a separate document).
4. Growing Minds: this incorporates what the founders believe is the best from
Lovaas Programme (ABA - Applied Behavioural Analysis, see below) and Son-Rise
programme. It incorporates ABA principles and methods into a play based
approach. Core goals are taught in a designated playroom by a number of volunteer
therapists and then generalised into other environments. Growing Minds
incorporates instruction time, where the adult is directing learning and intensive
interaction approach where the adult follows the child’s lead. Complete assessment
is carried out and a profile created from which an IEP (Individual Educational Plan)
is developed for the child.
5. LOVAAS The Lovaas approach is based on Applied Behavioural Analysis (ABA),
where behaviours are observed and measured and new behaviours are taught. The
Lovaas programme aims to encourage appropriate behaviour by continual
reinforcement of desired behaviour. This model is being hailed as highly successful
32
with some controversy over parents’ attempts to have their local authorities fund this
method.
6. SHARE: In Scotland, a new project has been funded by the Scottish Executive
Innovations Grants Programme, developed by a partnership of Strathclyde
University, South Lanarkshire Council and the Scottish Society for Autism. The
project has involved bringing together professionals from a range of disciplines
including Speech and Language Therapy, Teaching as well as Autism Advisers from
the voluntary sector to work together in providing support for families with children
with autism. It has used the Joint-Play Intersubjectivity Assessment Method (JPIAM)
developed by Strathclyde University to promote active interpersonal engagement
and communication in children with autism and their carers.
The politics of resource provision has been getting a public airing recently – there
was a news feature on television recently about the frustration of parents not able to
get the care they want for their children through the state system with the perception
this is more to do with politics than money. Parents in England a within the
boundaries of a particular local authority are campaigning to have the ABA model
available for their children. This perception, that politics and lack of will are more
relevant at times than lack of resources in their children not receiving what the
parents believe to be the appropriate treatment, is also supported in the interview
with the mother of an Asperger’s child (The full account of the interview with DR is
available as a separate document).
Additionally, despite the lengthy wordage of entries such as the website above, the
reality is that such resources are extremely limited and that the focus now seems to
be on diagnosis with actual remedial provision being restricted. For example, in
Glasgow, the team of educational psychologists dedicated to working with children
with learning difficulties number twelve. This team covers all children with all
learning difficulties, including ASD, from the ages of 5 to 19 years across the whole
of the city. There are of course other teams working in various areas eg community
care teams, or those based in schools, but they too are very small.
Chapter 7
The Parent’s perspective
33
It is apparent, on researching the world of alternative approaches to Autistic
Spectrum Disorder, that it is one of those proverbially small ones. The names of
those professionals and parents (often the people involved are both) who are
working to find the answers to questions of aetiology and treatment of ASD reappear
often in each other’s writings. But, in some ways, the ‘smallness’ of this field could
be a beneficial one. Those professionals, often parents of autistic children
themselves who are working to find answers to the puzzle, are apparently willing to
pool their resources and their findings, and through this collective approach are
helping each other not just to find more of the pieces, but to help fit them together.
In one book written by a parent of an autistic child, Karen Seroussi’s ‘Unraveling the
mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of
Research and Recovery’, this picture of a ‘small world’ is very apparent. Seroussi’s
book is a straightforward account of how the parents of a child diagnosed as autistic
went about investigating what had happened to their initially bright, capable and
happy child and pursuing possible treatments for him. In her forward, the author
states:
‘I recently reread my book…with a sense of amazement… Only a
parent who is obsessed and overwhelmed by her child’s special needs
could create a work like that …My goal was to help parents feel
empowered and be motivated to seek out answers for their children…’
(Seroussi 2002 p 2)
‘Obsessed and overwhelmed’ are interesting words to describe the driving urgency
with which parents of a child diagnosed as having ASD must be filled to find any
solutions possible. Research into this subject finds that it is often parents of autistic
children that are promoting progress in the understanding of aetiology and
treatment; and it is in this area that herbal medicine may best respond to the needs
of these children and their parents and provide one of its alternatives to what else is
on offer. The medical herbalist is one professional who, while making clinical
assessments and judgement based on their medical training and knowledge, uses a
‘patient-centred’ approach, that is, one based on an understanding of the need to
include the patient’s own perceptions, experiences and beliefs as an integral part of
any approach to treatment.
Parents of children diagnosed with ASD or Asperger’s syndrome reportedly have the
common experience of ‘not being listened to’ by the professionals allocated to them.
34
Parents interviewed for this research have repeated this picture, as well as the
parents who have published books or have websites. The mother of a boy with
Asperger’s syndrome (DR 2004) interviewed feels strongly that the parents of
children with ASD are not listened to and should be. Another mother of an
Asperger’s child, who is also a practising medical herbalist, states:
‘…so have some first hand experience of some of the issues, in
particular the need for parents to be supported and not feel so guilty all
the time (Noreen Miller-Lopez, BA(hons), MNIMH 2004)
It is worth remembering that while current thinking on autism may have come a long
way from early beliefs that autism was caused by ‘emotional refrigeration’ on the
part of parents (specifically mothers) of autistic children, understanding of the
condition started from that point. Kanner himself did not, apparently, believe that
parents’ emotional inadequacy was the only factor involved, but that either there
was an organic pathology present at birth, or that autism developed as the result of
organic predisposition combined with specific environmental events (Schreibman
1988 from Woodward and Hogenboom 2002). However, Kanner did describe autism
as a condition precipitated by the ‘over-intellectual, emotionally inadequate and frigid
characteristics of the child’s parents’ (Woodward and Hogenboom 2002 p 28) and in
1967, Kanner and colleague Eisenburg were quoted by psychoanalyst Bruno
Bettleheim: ‘Emotional refrigeration has been the common lot of autistic children’
(Bettleheim 1968 p 389). Although Bettleheim did accept organic pathology to be a
possible aspect of the development of autism, he was still recommending, in the late
1960’s, the removal of autistic children from their parents ‘in order to provide them
with a more supportive environment in which they could be helped to recover’
(Woodward and Hogenboom 2002 p 29).
Seroussi writes:
‘But a parent is the one person who sees the whole child, and who
watches his transition from a reasonably normal baby into an autistic
toddler. Those who try the biomedical intervention know exactly what
changes they are seeing. When I asked one of my physician friends why
she thought Dr Rimland 10 had lost credibility with the medical
community, she shrugged and replied, “Probably because he’s not a
10
Dr Rimland founded the USA-based ARU and the DAN! Organisation as previously
discussed
35
doctor, he’s a psychologist. Besides, he’s a parent’ (author’s
emphasis) (Seroussi 2002 p88)
It is an interesting reflection on modern thinking that assumes a parent to be too
closely involved emotionally to be objective enough in their assessment of their
child’s condition or needs. There is an implicit suggestion that parents of an autistic
child will be more likely to be gullible and pursue any fad in desperation as treatment
for their children. In fact, the parent of a sick child may arguably be the one person
who knows the child well enough to have the kind of insight required to achieve
breakthroughs in understanding of their condition. Additionally, it is highly unlikely in
this contemporary western life, where mothers may not only have more than one
child to look after but probably a job too, that any of them should voluntarily spend
their time and their money following the incredibly demanding regimes required to
pursue these alternative approaches such as the gluten and casein protein free diet
without a strong reason for doing so.
‘Always a firm believer in classical medicine, I never had the urge to
pass up a known medical treatment for one that was untested and
anecdotal. For all of my righteous indignation, I still knew one thing for a
fact: If there were a safe drug that effectively reversed the symptoms of
autism, I would certainly have chosen it over diet. The drug companies
could have my business, and I would not have to rearrange my kitchen,
my schedule, or my life’. (Seroussi 2002 p89)
Other parents whose names are known to those looking for alternative treatments
for their children are Lisa Lewis and Marilyn Le Breton, both of whom have written
guides on dietary approaches for autistic children. Marilyn Le Breton’s ‘Diet
Intervention and Autism’ is the more recent and is described as a ‘practical guide for
parents’. She writes:
‘I know from my own experience that the thought of the gluten
free/casein free diet is at best daunting; I was terrified. I knew about the
diet for six months before I implemented it with my son Jack. I now
bitterly regret those wasted months’. (Le Breton 2001 p 11)
It is worth adding this further quote, as Breton describes the scepticism and
misunderstanding with which she was greeted in the early days of implementing the
diet with her son:
‘If you find it hard to believe that a morphine high can be in any way
related to autistic-like behaviours, you need only read an account of the
experiences of a heroin addict to prove just how similar the two are…
36
This analogy also serves a purpose…with those well-meaning relatives
and friends who think you are potty for attempting the diet…I was told by
this nameless relative that ‘one packet (of chocolate buttons) wouldn’t
hurt’. Yet again, I explained…I added that I would rather the nameless
one make their way to the less salubrious part of town and purchase
some heroin for Jack and help him mainline it…The point was taken and
a few weeks later…the same sceptical relative (“I think that this is a
stupid idea. Poor Jack has got enough to try to cope with, without you
making his life even more difficult” etc) saw the massive change that had
taken place in Jack. On a later visit, I was told, “Who could have
believed the difference this diet would make? It’s wonderful’ (Le Breton
2001 p 22-23)
A point about this last quote is that the one person who did believe it was the boy’s
mother, the person who was most likely to have an insight into her child’s daily
wellbeing and who would be the one to implement any treatment involving diet.
Dr William Shaw (also a parent) reiterates this experience:
‘This diet probably won’t help everyone who tries it, but should you
decide to try, you must be both serious and scrupulous about it. You
must also make sure that school staff, sitters and (especially)
grandparents get with the program. Many an effort has been scuttled by
a grandma saying ‘but just a little couldn’t hurt, could it?’ or by a
disbelieving outsider betting you won’t notice if they slip a cookie or a
pretzel to your child. This cannot work unless everyone who comes near
your child follows the strict guidelines that you provide.’ (Shaw 2002 p
175)
Any parent attempting this kind of dietary alternative approach with their autistic
child will need to be a) well informed, b) well prepared and c) well supported, which
is where the herbalist may come in. According to Rosemary Kessock, founder of the
UK based organisation, Allergy-induced Autism (AiA) parents of autistic children
making enquiries about dietary intervention from GPs and specialists may well hear
the response:
“There is no evidence to support the theory that dietary regimes can help
children on the autistic spectrum’ (Kessock from Le Breton 2001 p9).
However, as she also points out, while there may be no ‘scientific evidence’ in the
form of double-blind placebo controlled trials and medical papers published on the
subject, there is enough anecdotal evidence to convince many parents to at least try
a dietary approach. However, the chances are these parents will find themselves
under a lot of pressure, not just from the practical demands and expense of
37
implementation of the dietary regimes, but also emotionally, from GPs and other
professionals, family, friends.
Seroussi makes a point in her book about parents’ right to receive the kind of
treatment and support they need from their GP and their responsibility to find it.
‘I felt my growing excitement as I spoke. Dr Robinson believed me! She
had heard the story and was impressed and interested, not irritated and
dismissive…She laughed. ‘I really prefer to practise medicine this way. I
am a parent myself, with four daughters. That is the kind of humbling
experience you don’t get in medical school.’…I had learned another
lesson…You have the right to use a doctor who shows you respect and
listens to your observations…You should be able to trust her not to
ridicule your ideas and to give you all of the information you need to
make intelligent decisions. If you cannot, then it is your responsibility to
find another doctor. (Seroussi 2002 p100-101)
For a parent to have made their way to a herbalist may mean they have already had
to find the strength not just to disagree with what they have been told already by the
professionals involved in their child’s care, but to act, possibly against the wishes of
other relatives. Another example of this difficulty for parents is that one of the
apparent reasons people feel so strongly for (as well as against) Wakefield is he
was one of very few professionals working in the field of Autistic Spectrum Disorder
to take seriously an aspect of the children’s pathology often dismissed, it would
seem, by mainstream medical practitioners. As described earlier, parents may find
their appeals for help with their children’s digestive problems met with a blanket
dismissal. Seroussi describes how she felt on first hearing Wakefield present his
findings at a public meeting in the USA:
The children he described sounded just like Miles; they had chronic
diarrhoea and late-onset autism. Their parents sounded like me –
discouraged and frustrated when physicians neglected the GI
abnormalities because the child had autism “that mysterious disease”
(Seroussi 2002 pp155-156).
Any medical practitioner needs to understand that to the individual parent and child,
statistical evidence is meaningless. One of the issues raised in a recent film
broadcast on Channel 5 on the autism debate and the issues around Andrew
Wakefield’s research was the frustration experienced by a mother desperately trying
to get an answer as to why her son’s personality and physical health are
disintegrating in front of her eyes only to be met with blank lack of understanding.
Part of the training for medical herbalists is to validate the subjective experience of
38
our patients, it is the herbalist’s job, not just to assess and diagnose on an objective
basis, but to acknowledge the patient’s experience as being of essential value. The
role of positive thinking, self-expression, placebo, is not the subject of this research,
but the positive effects of personal validation and support are known and emotional
support of the parent will inevitably have an effect on the well-being of the child.
Additionally, parents are likely to know their children better than anyone else and in
terms of monitoring the progress of the disorder or the effect of any treatment their
perspective is essential.
‘…I’ve learnt that the parent’s perspective is the single most important
concept that has and continues to shape and inform our treatment
programme and our research. It means that we have an equal working
relationship in which the professional people can learn from and use the
parent’s unique experience with their own child, and where as
professionals we can offer the parents knowledge of the field and our
experience…(The Advocate Interviews Eric Schopler PhD [online]
available at the website www.TEACCH accessed March 2004)
Chapter 8
The herbalist’s perspective
‘But the success of rational thought is success at a price, perhaps a
price that may yet be too much to bear. Obsessive concentration on
fragments of the whole prevents one from seeing the whole
itself…benefits to the consumer of rationalist medicine have perhaps
been the most impressive, the hardest to deny. Massive reduction of
suffering has followed rational observations such as those made by John
Snow in 1849 when he showed that an outbreak in London of the
hitherto mysterious disease cholera could be traced to one supply of
drinking water, or of Semmelweis, who survived the fury of his
obstetrician colleagues to show conclusively that their own unwashed
hands were the primary cause of death of mothers after labour…
Yet in spite of these advances, it is also accepted that diseases still
exact their toll on us…And patient after patient turns away from their
doctors and goes towards practitioners of alternative therapies because
they say that the priest of rationalist scientific medicine either is no
longer effective or does not even seem able to understand their story
any more’. (Mills 1991 pp 16-17)
In this research into Autistic Spectrum Disorder a recurring theme has emerged, that
of frustration on the part of parents as they perceive their experiences, their opinions
and their understanding of their child’s condition to be ignored or dismissed by
professionals involved. This may be an area in which herbal medicine has much to
offer. The quote above is taken from ‘The Essential Book of Herbal Medicine’,
39
published in 1991, in which the author, Simon Mills
11
briefly describes a history of
western herbal medicine, putting contemporary herbal medicine into a philosophical
context. This philosophy is possibly one of the reasons why herbal medicine has
endured in the developed countries despite the introduction of ‘wonder drugs’ such
as antibiotics, antidepressants, steroids and vaccinations.
Almost certainly, and albeit anecdotally, any practising herbalist will have experience
of patients reiterating this sense of ‘not being listened to’ by their doctors. This could
well be because they, the doctor, may have only five minutes’ consultation time in to
which to make a diagnosis and come up with some kind of solution, whether in the
form of prescription or referral – and their patients will want a solution, probably
often in situations for which there is none, or at least not one that can be instantly
conjured up.
In contrast, a patient attending a herbal clinic will be given an hour or so in which to
‘tell their story’. In that time, questions are asked on specific symptoms or
conditions, general health, past medical history, family medical history, diet and
lifestyle. The reasons for this are partly safety and legal requirements – herbalists
are allowed to prescribe medicines only on the basis of taking a full case history and partly the necessity of gaining what in the herbalist’s professional opinion is all
the relevant information. That will include, importantly, the patient’s own experience
of their condition.
Many books written by practising medical herbalists emphasise the importance of
the therapeutic relationship between the patient and the practitioner. For example,
the German doctor and herbalist, Rudolph Fritz Weiss, refers to the ancient medic
Asclepios of Thessaly, who is recorded as having lived 3,000 years ago and who
described an order of the use of therapeutic interventions: ‘First the word – then the
plant – lastly the knife’. (Weiss 1998 p10) 12
11
Mills has been director of research and president of the National Institute of Medical
Herbalists; he has also run his own thriving herbal practice and was a founder of the
Research Council for Complementary Medicine and first chairman of the Council for
Complementary and Alternative Medicine. He has also been joint director of the Centre for
Complementary Health Studies at Exeter University.
12
Weiss adds the use of ‘major synthetic chemotherapeutic agents’ as being a modern
insert into this sequence, after ‘plant’ and before ‘knife’.
40
‘On the other hand it is important to emphasise that the ‘word’ has been
put as the first step in medical practice. The ‘word’ is a psychological
remedy, addressing first of all the soul, through which it has important
healing effects right into the physical sphere. Modern psychosomatic
medicine has made this clear again. The ‘word’ spoken in the right way,
is a force of much greater power and penetration than a materialistic
world has been prepared to accept. If there is a dialogue between
physician and patient, and at the same time a plant medicament is
given, it is the ideal method of healing…’ (Weiss 1998 p11)
Recognition of the connection between soma and psyche is growing in modern
therapeutic professions. The following is from a forward by Colwyn Tretharven
(Professor Emeritus of Child Psychology and Psychobiology, University of
Edinburgh), to Woodward and Hogenboom’s book on anthroposophical approaches
to the treatment of autism:
‘But all the links and dependencies that they so carefully record –
between the digestive system and the mind; between bodily feelings and
imagination or learning; between self-knowledge and sensitivity for other
people’s intentions, interests and feelings – are mediated by the brain, if
we but knew how. And brain science is changing. At least some of us
who are concerned with the richness of normal consciousness, or with
the changes brought on by brain injury, neural disease, or
developmental disorder, are clear that some unifying principle operates
and that emotions are integral to its operation’ (p9) 13
While in herbal medicine assessment and diagnosis may be based largely on
medical training and a contemporary understanding of pathophysiology, both the
disease
process
and
recovery
may
be
inextricably
linked
with
emotional/psychological states, as described by Trevarthen, above, and therefore
the subjective experience and the perceptions and insights of the patient into their
own condition is of great, possibly primary, importance. In the case of a child,
including one on the autistic spectrum, this basic principle still applies but may also
apply to the parent of such a child. It is the parent who will be expected to have the
most intimate understanding of what the child is experiencing apart from the child
themselves.
While the term ‘holistic’ is one possibly overused currently, often to describe any
kind of alternative treatment, it is a word that describes a fundamental difference
between rationalist medicine as practised in the contemporary western world and
13
Trevarthen refers to Damasio, A. The feeling of what happens: Body, Emotion and the
making of Consciousness, Heinemann 1999
41
some of the alternatives, including herbal medicine. There are a number of ways in
which a treatment model may be described as ‘holistic’. Trevarthen defines ‘holistic’
as meaning ‘inclusive’, in the sense of an approach to children with Autistic
Spectrum Disorder that includes them as part of humanity, not distinct or removed
from it.
‘… if there are to be beneficial changes in the child, changes have to
come about in the responsiveness of parents, siblings, therapists and
teacher – changes that will foster interest, enjoyment and learning. I see
that accepting a ‘holistic’ or inclusive attitude to humanity in all the
children, as well as respect for their individualities, brings improvements.
I contrast this with the academic identification of specific deficiencies at
a higher more educated level of mental functioning, which are all
measurable by controlled, pre-structured tests. While these tests,
models and theories certainly illuminate puzzles that arise in the
exploration of pathological effects that develop in the psychology of
different groups of children, they have remarkably little practical use in
helping these children’. (Woodward and Hogenboom 2002 p11)
There are other definitions of ‘holistic’. Herbal medicine may be described as holistic
in that it aims at contextualising disease in the patient as a whole person, so that
any symptoms are seen as being part of a larger picture. In this setting, it is not
difficult for the herbalist to accept the potential validity of theories that relate
neurological damage to breached gut-wall integrity. Additionally, the digestive
system is a major starting point for herbal medicine in any condition, as it is here
most processes of assimilation, required by every cell of the body, start to take
place. It has been described as ‘an important interface between an organism and its
environment’ (Walker 2003 EJHM Vol 6 issue 2 p29).
Herbalists use, as a key part of any diagnostic approach, a detailed analysis of the
digestive system and its health, or lack of, and then start treatment by working with
the diet and nutrition, these being core aspects of their training and practice. The
theory of ‘Leaky Gut’ is something the herbal profession have been aware of for
many years, and taken seriously, for the simple reason it makes sense, and
treatment strategies based on the theory have, anecdotally, proved effective. This,
again, makes it relatively easy for the herbalist to respond positively to theories of
gluten and casein toxicity. Any practising herbalist will be aware of the prevalence of
dairy and wheat intolerance among their patients and it does not then seem such a
huge leap to accepting the possibility of opioid poisoning in the developing brain of
the autistic child (Mills 1998).
42
More importantly perhaps is that herbalists work in an empirical context and carry
out interventions that in their professional experience or in the experience of their
peers and colleagues have shown results. Additionally, patients return every 3-4
weeks to discuss progress with their herbal practitioner. If the treatment is having
positive effects then it is continued, if not, then treatment is modified. Often it is a
combination of the two – some aspects appear to be working, some are not. The
point is, herbal treatment is flexible and responsive and seen as being part of an
organic process.
‘The living body is an ecosystem. Herbalists are not among those who
believe that one can direct ecosystems to short-term gain without
repercussions. In another context they would much prefer to prevent
drought by preventing deforestation and overgrazing rather than divert
rivers or seed clouds. The sense of the whole being more than the sum
of its parts is no more dominant than in looking at the internal integration
of the whole human being. In any case practitioners have no doubt that
applied with such sensitivity herbal remedies can encourage the body to
considerable efforts….’ (Mills 1998 p129)
In one herbalist’s experience (Acott 2004), children with ‘full-blown’ autism often
have a ‘fascinating relationship with food and their sense of smell’. This coincides
with other sources and observations about the relationship between autists and
food. If a child is particularly obsessed with one food, Acott will often try having it
removed from the child’s diet to see what happens. Sometimes this is beneficial,
sometimes it is not and the obsession may be for other reasons (Acott) (It is also
possible that still unidentified problems continue to mask any improvement gained
from the removal of the food item). Acott additionally recommends, firstly, as well as
the removal of wheat and dairy, sugar and chemical additives from the child’s diet.
Herbalist Nigel Wynn also used dietary intervention as the first steps in treatment of
ASD. The following quote is taken from a paper presented to the annual conference
of the NIMH in 2001:
‘In the cases I have seen, there is an unquestionable link between the
gut and behaviour – parents can often predict what the child’s behaviour
will be on any given day, simply from the state of their digestion…and
the gut is central to my treatment strategy.
‘First of all then, a gluten and milk-free diet – essential to at least buy
time…Leaky gut and Candida are almost always implicated’. (Wynn
2001)
43
Another professional herbalist interviewed, author Annie McIntyre (FNIMH) 14,
reflected the use of these strategies described above and although she is not aware
of having any diagnosed autists amongst her patients ‘always gives treatment for
the GIT in any child with behavioural problems’ (McIntyre 2003).
According to Edelson of the Center for the Study of Autism, in Oregon USA, chronic
diarrhoea is a common problem for autistic children and makes the point that this
condition may result in poor nutritional absorption, which in turn may affect brain
development, cognitive processes and behaviour. Edelson also makes the point that
this is one of a number of physiological problems commonly experienced by children
with ASD, dismissed by health professionals as being an aspect of Autism and
therefore, untreatable (from the website). The purpose of this paper is not to discuss
or justify any particular herbal remedies, but to debate the relevance of treatment
principles. However, it is the case that herbal medicine has at its disposal the means
for treating diarrhoea in children gently and without the danger of long-term
dependency and while the aim is to treat the root causes of the problem, it is also
possible with herbal medicine to treat symptomatically and in some cases, such as
chronic diarrhoea in autistic children, most desirable.
It is interesting that in his book on biomedical interventions, Shaw (2002)
recommends a number of different herbs for various symptoms and mentions a
number of herbal remedies. Possibly, because of the range of things to which many
autistic children are vulnerable, herbal remedies with their gentle, probiotic action
and their lack of synthetic colourings and sweeteners may be seen as an alternative
even for people who wouldn’t normally think to look to herbs for their medicine.
However, the herbal profession may have a task to raise general consciousness
about the availability of expert advice on the use of herbs and dietary changes. It
seems unfortunate that in a book put together as a series of essays by different
authors, there was not a chapter on herbal remedies written by a qualified medical
herbalist. Similarly, in remarks made by Shattock to a conference on biomedical
approaches in ASD (Newcastle Conference 2004), nutritionists were mentioned as a
group of professionals currently ‘coming up to speed’ on nutritional/dietary
approaches. Again, clinical psychologist and DAN! practitioner Ken Aitken may refer
autistic clients on to a qualified nutritionist and sometimes prescribes, for example,
14
Annie McIntyre is an experience practising herbalist, Fellow of the NIMH, lecturer and
author of a number of books including: The Complete Women’s Herbal 1999 UK: Gaia
44
extracts of the herb Glycyrrhizza glabra (liquorice), but he has never thought to refer
on to a qualified medical herbalist (Aitken May 2004). Although alternative models
might include many of the areas in which herbalists are trained, the qualified medical
herbalist does not seem often to be thought of as a source of help.
Parents are described by herbalists as rarely bringing their children to a herbal clinic
complaining ‘of autism’. They tend to bring their children with one or several out of a
range of problems, including the following:
Obsessive behaviour
Withdrawn behaviour
Behavioural problems
Fear
Not wanting to go to playschool
Sleep problems (most commonly)
eating problems
eczema (common) (Acott 2004)
Autistic Spectrum Disorder is unusual in that it is one condition for which
symptomatic approaches to treatment is probably a particularly relevant strategy. In
line with the Sunderland Protocol as discussed earlier the first approach would be
the removal of suspected toxins from the system, the next is to identify specific
pathologies and so on. Additionally, herbal medicine has a dispensary of treatments
for specific problems such as listed above. So, a herbalist might make up a
prescription made up of a mixture of herbs to address sleep problems, anxiety,
appetite and eczema. This prescription will be additional to dietary and nutritional
advice.
Nutritional deficiency, as discussed in previous chapters, is another area believed to
be involved in ASD, Vitamin B6 deficiency being a primary issue, and Essential
Fatty Acid deficiency being another. Herbalists may already recommend EFA
supplementation in many patients’ diets. According to Acott, having recommended
its use in a patient with eczema and having observed more wide-ranging benefits in
the patient, she now always recommends an EFA supplement to parents for their
autistic child.
45
EFA supplementation has also been prescribed for a range of conditions, by this
author, including for a child with eczema who had learning difficulties. Along with
EFA supplementation, the parents of the child were recommended to withdraw dairy
and wheat from the child’s diet and to reduce his sugar intake. The child was also
given a herbal medicine. Within three weeks of all these treatments being
implemented, the boy’s eczema was much improved, he had been progressed a
reading level at school and had coped well with a challenging social situation (the
child also had some behavioural issues).
The main point about the case history described above is that treatment was carried
out in basically the same way as it would under the Sunderland Protocol. The
approach to any disorder in herbal medicine is very similar to approaches proposed
in biomedical treatment of ASD. Additionally, herbal treatment is possibly particularly
appropriate in ASD because herbal treatment is based on the principle of treating
each patient as an individual with an individual combination of problems. Autism is
perceived as being particularly difficult to treat because, as described in Chapter 1, it
manifests within a range of different problems and biological conditions and
therefore can only be treated with any success on an individual case-by-case basis.
Aitken, for example, will base his first steps to treatment on the clinical presentation
but almost always sends a urine sample to Sunderland for analysis.
‘We still have a lot of work to do, but we have so much hope. That ‘knife’
in my stomach has gone!’
(letter from parent ‘Marie, San Jose, California’ from Seroussi 2002 p 7)
What Aitken perceives parents of autistic children to be looking for are what they do
not generally get from the NHS – basically, hope of treatment. They will normally be
told, on receiving a diagnosis, there is not much can be done for Autism. This is
perhaps another area herbal medicine can offer something not readily available
elsewhere – hope.
Chapter 9
Conclusion
Autistic Spectrum Disorder is a specialist area, affecting children (and adults) with
special needs and requiring specialist knowledge on the part of any professional
involved in the care of children with the disorder. This is true, obviously, of any of the
46
less common conditions that may be presented to a general practitioner. In herbal
medicine, as in other health professions, the practitioner is expected to acquire any
knowledge, additional to their basic qualification, necessary to treat any particular
disease in individual patients. In this respect, ASD is no different.
There are basic principles from which herbal medicine operates in practice that are
in accordance with approaches developed by advocates of alternative treatments in
ASD. The Sunderland Protocol as promoted by the Autism Research Unit in
Sunderland University, UK, lists a number of steps to treatment that are very similar
to a herbal approach that is, remove suspected toxins from the patient’s
environment, identify the pathology, treat any damage and support the organism’s
return to health, (although herbal medicine can take this further in its use of herbal
medicines).
Additionally, the principles from which herbal medicine works mean that theories of
aetiology in ASD such as ‘Leaky Gut Syndrome’ are not difficult to assimilate into
practice. The medical herbalist also has a dispensary of herbs for the treatment of
many of the symptoms suffered by ASD children eg intestinal cramping,
sleeplessness and so on. Herbal medicine may also be able to offer a gentler
alternative to the chelation therapies currently available to children known to have
problems with heavy metal removal from their systems. The current methods can be
too severe for small children’s systems (Aitken 2004).
Although herbal medicine is ‘holistic’ in that it’s purpose is to address the root
causes of any particular disorder rather then treating symptoms, it can and does
treat symptomatically where appropriate. In ASD, some common symptoms of the
condition such as bowel disorders, sleeplessness and so on, perceived by some
parents as being dismissed by some mainstream medical practitioners, can be
treated with herbal remedies.
Herbal medicine has other things to offer particularly relevant to the treatment of
children with ASD. Much of any progress made in the past and being made in the
present is driven by parents of children with the condition, both in terms of funding
and in terms of research. Many parents of these children are reported as perceiving
their views to have not been acknowledged, respected or supported by mainstream
medical practitioners. This is possibly an area where herbal medicine in practice has
a lot to offer and where it would probably be called on – at a point where parents of
47
ASD children have already received and been dissatisfied with what else is available
to them. A patient-centred approach that acknowledges the importance of the
patient’s subjective experience and insights is a crucial tenet of herbal medicine.
In an introduction to a paper by respected phytotherapist Kerry Bone on ‘A
Therapeutic Approach to Autimmune Disease’ Bone describes the optimum
approach taken by herbal practitioners:
‘Would lead to a systemic approach to defining the key causative and
sustaining factors in each case. For each individual it is likely…the
process has been precipitated by a unique and complex interaction of
causative events. What we therefore need is a multi-factorial model,
which allows us to individualise patients, yet at the same time takes into
account the most likely factors operating in their particular disease. This
requires a blend of traditional understanding with the latest research
findings. Such a synthesis is the goal of the modern phytotherapist’
(Bone 1995)
No one at this point working professionally with ASD children is able to say they can
offer a cure and anyone who does should be treated with scepticism and caution.
Parents of children diagnosed with ASD are a vulnerable group and are open to
exploitation; this has reportedly been the case15. (For a guide to parents when
considering new or alternative treatments refer to the ARI USA website). This is not
to say there are no reports of cures (see Seroussi 2002) and certainly many of
significant improvements made by children using a number of different approaches,
but these parents need support and help, possibly, in sifting through the piles of
information available. What they should receive from any professional working with
them is support in gaining as much information as possible in order to make their
own, informed, choices for their children’s care and treatment.
‘Other nonbiological interventions such as special-ed schools, speech
therapy and occupational therapy are essential for teaching the social
and academic skills the child has missed, or cannot learn in typical ways
….My experience is that a parent must research the treatments and
make the decision based on his or her knowledge of the child ‘ (Seroussi
2002 p 7).
15
According to Aitken 2004 there have been accusations, for example, of excessive fees
being charged by an individual USA practitioner working in the field of ASD. Whether this is
the case or not is unconfirmed, but the point being made is that people will travel the world
with their children to grasp at any hope of a cure and this need is open to abuse.
48
Also:
‘An assessment of each individual client, using both formal assessment
– the best and most appropriate tests available and also informal
assessment, meaning the best observations possible by teachers,
parents, and all others in regular contact with the child. In other words,
the best understanding of each individual’s learning problems and
strengths is needed to identify the best individualised treatment
possible’. ([online] available at http://TEACH. Accessed March 2004)
This attitude of co-operation and integrated care as described on the TEACCH
website and quoted above may be the optimum hoped for among professionals
working in the field of ASD along with the parents but in practice this may not always
be the case. Also, while the TEACCH programme refers to educational therapy, this
integrated approach should really apply to all aspects of the child’s care, including
any biomedical treatments. It is important to recognise that while the benefits of
such an approach would be benefits to all involved, the reality is that it may well not
happen in any individual case.
According to Clinical Psychologist, Ken Aitken, ASD is on the brink of presenting a
‘public health disaster’ (Aitken 2004) to this country, with each individual diagnosed
with ASD costing a possible £3,000,000 for a lifetime’s care. With the numbers now
presenting a potential cost to exceed that of the national care of people with
Altzheimer’s disease, major pharmaceuticals companies are now reportedly poised,
according to Aitken, to invest large sums of research funding in a move to produce
drugs for the treatment of ASD. These drugs will take time to produce and will be
expensive. In the meantime, approaches such as the removal of wheat and gluten
from children’s diets will continue to be treated with scepticism and downright
hostility on occasion because of the lack, primarily, of accepted evidence mainly due
to lack of funded research. This research is unlikely to be funded by any of the
obvious sources, such as the pharmaceuticals companies, when there is no profit to
be made by any of the information gained.
There is some progress, however. In the USA, where there is more charitable
funding available, parent-led organisations such as CAN! And NAAR are investing
millions of dollars for research into alternative treatments and the USA government
is now adding to that funding. Perhaps, in time, as governments realise the only way
treatment of people with ASD will be affordable will be through previously
‘alternative’ approaches, these approaches may become officially recognised.
49
In the meantime, it is still the case that from referral by GP to diagnosis of ASD can
take anything from weeks to years and some parents will turn to alternative help
while they are waiting. The picture presented of the efficacy of any of the treatments
or approaches discussed in this paper is that firstly, no single one of these is going
to benefit all children diagnosed with ASD and so a flexible and open-minded
approach is always going to be required. Secondly, that early intervention will offer
the best chance of improvement – not that there is no point in carrying out a GF/CF
diet for example once the patient is older, but that the best results are seen when
the diet is introduced as early as possible. Thirdly, an assessment method needs to
be established, with base-line assessment and improvement criteria in order to
monitor the effectiveness of these approaches. Fourthly, parents of a child not yet
diagnosed as having ASD should be advised as to the necessity of also looking at
psycho-educational approaches to treatment of their child.
From the information gained in the course of this research it would appear herbal
medicine has a lot to offer in the treatment of children with ASD and their parents.
The greatest challenges to being able to do this may be lack of evidence and
therefore lack of credibility, but primarily would seem to be lack of awareness of
what herbal medicine has to offer. Parents of children diagnosed with ASD and
other practitioners need to know what it is herbal medicine does and where it can
intervene in the treatment of these children before herbal medicine can be seen as
an appropriate and readily available resource.
APPENDIX A NUTRITIONAL PERSPECTIVES ON THE BEHAVIORAL CHILD
50
Woody R. McGinnis M.D. Taken from the website of the Autism Research Institute
[Please note: both appendices A and B have been copied directly from the website)
Physical Health Profile of the Autistic Child strongly tends toward:
1. Gastrointestinal Abnormality





Malabsorption (J. Autism/Childhood Schizo, 1971 1(1):48-62)
o freq. reports acholic stools, undigested fibers, positive Sudans.
o 85% of autistics meet criteria for malabsorption (B.Walsh, 500 pts)
Maldigestion--elevated urinary peptides
o P Shattuck (Brain Dysfunct 1990; 3: 338-45 and 1991; 4: 323-4)
o KL Reicheldt (Develop Brain Dys 1994; 7: 71-85, and others)
o Z Sun and R Cade (Autism 1999; 3: 85-96 and 1999; 3: 67-83)
Microbial Overgrowth--fungal, bacterial and viral
o William Shaw, Biological Basis of Autism and PDD, 1997.
o E Bolte on Clostridium (Med Hypoth, 1998; 51: 133-144)
o P Shattock and A Broughton IAG elevations
o W Walsh and W McGinnis pyrrole elevations
o Andrew Wakefield, Lancet 1998; 351: 637-4)
o TJ Borody, Center for Digestive Diseases, New S. Wales, Austral.
Abnormal Intestinal Permeability
o P D'Eufemia (Acta Pediatr 1995; 85; 1076-9)
G.I. Symptoms reported by parents: diarrhea, constipation, gas, belching,
probing, visibly undigested food and need for rubs
2. Compromised Immunity



Recurrent Infections
o Euro Child/Adolesc Psych, 1993:2(2):79-90
o J Autism Dev Disord 1987; 17(4): 585-94
Abnormal Indices
o T-cell Deficiency (J Autism Child Schizo 7:49-55 1977)
o Reduced NK Cell Activity (J Ann Acad Chil Psyc 26: 333-35 '87)
o Low or absent IgA (Autism Develop Dis 16: 189-197 1986)
o Low C4B levels (Clin Exp Immunol 83: 438-440 1991)
Skewed ("elevated") Viral Titers increasing grass-roots reports V Singh
University of Michigan
3. Detoxification Weakness



Phase II Depression (S. Edelson, DAN Conference Sept, 1997, and
Toxicology and Industrial Health 14 (4): 553-563 1998)
o Sulphation low in 15 of 17 (mean 5 vs. nl 10-18)
o Glutathione Conjugation low in 14 of 17 (mean 0.55 vs 1.4-2.9)
o Glucuronidation low in 17 of 17 (mean 9.6 vs. 26.0-46.0)
o Glycine Conjugation low in 12 of 17 (15.4 vs. 30.0-53.0)
Sulphation Deficit (Biol Psych 1; 46(3): 420-4, 1999)
Peroxisomal Malfunction (P Kane, J of Orthomolec Med 1997; 12-4: 207-218
and 1999; 14-2: 103-109)
51


Higher blood lead levels in Autism and documented response to EDTA
Chelation (Am J Dis Chld 130: 47-48, 1976)
Apparent temporal association autism onset and lead exposure (Clinical
Pediatrics 27: 1; 41-44 1988)
4. Abnormal Nutritional Profile in Children with Autism












Lower serum Magnesium than controls (Mary Coleman, The Autistic
Syndromes 197-205, 1976)
Lower RBC Magnesium than controls (J. Hayek, Brain Dysfunction, 1991)
Low activated B6 (P5P) in 42%. Autistic group also higher in serum copper.
(Nutr. and Beh 2:9-17, 1984)
Low EGOT (functional B6) in 82% and all 12 subjects low in 4 amino acids
(tyrosine, carnosine, lysine, hydroxylysine). Dietary analysis revealed belowRDA intakes in Zinc (12 of 12 subjects, Calcium (8 of 12), Vitamin D (9 of
12), Vitamin E (6 of 12) and Vitamin A (6 of 12) (G. Kotsanis, DAN Conf.,
Sept, 1996)
B6 and Magnesium therapeutic efficacy--multiple positive studies (start with
Am J Psych 1978; 135: 472-5)
Low Derivative Omega-6 RBC Membrane Levels 50 of 50 autistics assayed
through Kennedy Krieger had GLA and DGLA below mean. Low Omega-3
less common (may even be elevated) (J Orthomolecular Medicine Vol 12,
No. 4, 1997)
Low Methionine levels not uncommon (Observation by J. Pangborn)
Below normal glutamine (14 of 14), high glutamate (8 of 14) (Invest Clin
1996 June; 37(2): 112-28)
Higher Copper/Zinc ratios in autistic children. (J. Applied Nutrition 48: 110118, 1997)
Reduced sulphate conjugation and lower plasma sulphate in autistics. (Dev.
Brain Dysfunct 1997; 10:40-43)
B12 deficiency suggested by elevated urinary methylmalonic acid (Lancet
1998; 351: 637-41)
Hypocalcinurics Improve with Calcium Supplementation Lower Hair Calcium
in Autistics Reported (Dev Brain Dysfunct 1994; 7: 63-70)
ARI parent survey for therapeutic responses by autistic children:




50% improved with Zinc (6% worsened)
49% improved with Vitamin C
46% improved with Magnesium and B6 (5% worsened)
58% improved with Calcium (Later survey 42%)
Interventional Strategies for Behavioral Children
1. OPTIMIZE NUTRITION



Low Glycemic
Big Breakfast, Protein First, Frequent Meals
Good Fats
52









No Excitotoxins
Organic as Possible
Plenty of Fiber
Careful with the Copper
Baseline CBC, UA, Thyroid
Urinary pyrrole
RBC Fatty Acid Analysis
Hair Mineral Analysis/Other Mineral Studies
(PHF)
Start with these incrementally, continue until proven otherwise:




Zinc with Manganese
B6 (and/or P-5-P) with Magnesium
Calcium
Vitamins C and E
Then Address Fatty Acids



Evening Primrose for GLA (Careful Seizures or Asthma)
Cod Liver Oil (Provides Vit A and D plus EPA/DHA)
Fish Oil or Neuromins for additional Omega 3
Other: B12, Biotin, Taurine, MSM, Folate, DMG, Amino Acids, Mb, Fe
2. ADDRESS OVERGROWTHS AND GUT CARE








O&P at a bare minimum
Urinary Organic Acids
Nystatin/Oral Amphotericin/Diflucan/Cranberry/Grapefruit Seed
Reconsider NSAIDS
Fiber/FOS/Glutamine/Glucosamine
Pentosan Polysulphate ("Elmiron")?
Re-populate bowel with probiotics
Creon or other digestive enzymes
3. ADDRESS FOOD INTOLERANCES



IgG food antibody blood testing
Urinary Peptides
Address lactose, phenolic and high-arabinose intolerance
4. SECRETIN IN AUTISM
53
Secretin Safety
After many years of use as a diagnostic agent, Secretin has no published
reports of serious side effects, which is a fairly remarkable record. As
Secretin has been used over the past two years to benefit thousands of
autistic individuals, there have been some problems, though few and far
between.
Variable degrees of hyperactivity or agitation lasting days to weeks have
been associated with Secretin for some time. More worrisome was a
relatively brief first-time seizure in a two-year-old boy receiving his first
infusion of Secretin early this year. A solitary event of this sort, particularly
from a population of children known to have a high natural incidence of
seizures, left us unsure about the cause of the event. Now we have
additional information.
We have learned of two new cases which parents and physicians should
know about in order to ensure that Secretin is administered in the safest
possible manner. The first of these also involved a previously seizure-free
child. This seven-year-old boy had improved with three prior infusions. At the
end of his fourth infusion he experienced a very difficult first-time seizure and
required prolonged efforts by physician and paramedic personnel to sustain
breathing. He made a rapid, full recovery and his mother is disappointed that
he cannot continue infusions, because she feels even this last infusion
helped his behavior.
A third case involved a child who had no apparent seizure activity, but like
the second case, lost breathing after repeated infusion. The practical lesson
from these three cases is that even if only a tiny percentage of autistic
children have seizure or breathing problems with Secretin, the prudent thing
to do is assure that Secretin is administered in a truly "resucitation- ready"
medical setting. Just in case.
From an ethical point of view few would question that the parent needs to
know these facts in making the Secretin decision. An informed choice will be
the right choice.
Woody McGinnis M.D.
November 18, 1999
54
APPENDIX B
General Issues in the Use of Medication in ASD: an overview of available
information on pharmacological drug therapy in ASD. Taken from the website of the
Autism research Unit, University of Sunderland, UK. http://osiris.sunderland.ac.uk
SANTOSH, PJ., BAIRD, G 2001 Pharmacotherapy of target symptoms in autistic
spectrum disorders Indian J Pediatr 2001 May;68(5):427-31
Department of Child & Adolescent Psychiatry, Institute of Psychiatry,
De Crespigny Park, Denmark Hill, London SE5 8AF, UK.
p.santosh@iop.kcl.ac.uk
POSEY DJ, MCDOUGLE CJ. 2001 Pharmacotherapeutic management of autism
Expert Opin Pharmacother 2001 Apr;2(4):587-600
Riley Hospital for Children, Room 3701, 702 Barnhill Dr.,
Indianapolis, IN 46202, USA. dposey@iupui.edu
RIDDLE MA, BERNSTEIN GA, COOK EH, LEONARD HL, MARCH JS, SWANSON
JM., 1999.
Anxiolytics, adrenergic agents, and naltrexone J Am Acad Child
Adolesc Psychiatry 1999 May;38(5):546-56
Division of Child and Adolescent Psychiatry, Johns Hopkins Medical
Institutions, Baltimore, MD, USA.
MARTIN, A., SCAHILL, L., KLIN, A., VOLKMAR, FR., 1999 Higher functioning
pervasive developmental disorders: rates and patterns of
psychotropic drug use. J Am Acad Child Adolesc Psychiatry 1999
55
Jul;38(7):923-31 Child Study Center, Yale University School of
Medicine, New Haven, CT, USA. andres.mertin@yale.edu
SCAHILL L, KOENIG K. 1999 J Child Adolesc Psychiatr Nurs 1999 Jan
Mar;12(1):41-3 Yale Child Study Center, New Haven, CT, USA.
BRASIC, J.R., 1997 Dyskenesias subside off all medication in a boy with autistic
disorder and severe mental retardation.
Psychol Rep 1997 Dec;81(3 Pt 1):755-67
Department of Psychiatry, New York University School of Medicine,
NY 10016-6497, USA.
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Speakers:
HOOPER, Malcolm, University of Sunderland.
PORTWOOD, Madeleine, Senior Educational Psychologist Education Services
Durham County Council
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WARING Rosemary, University of Birmingham.
WHITELY, Paul, Autism research Unit, University of Sunderland.
Interviews
1. Kit Acott (ACOTT 2004), Member of the National Institute of Medical Herbalists
(MNIMH). Acott is an experienced practising herbalist who runs a ‘women and
children’s’ herbal clinic in Edinburgh. An in-depth interview was held in November
2003 with questions asked on general approaches to treatment of children with
ASD, specific treatments used and general observations on the needs of autistic
children and their parents.
2.Telephone interviews were held with other herbalists, including Annie McIntyre
FNIMH, experienced medical herbalist and author of a number of books including
The Complete Women’s Herbal (1999, 2nd edition. London: Gaia Books) and The
Herbal for Mother and Child (1992, Shaftsbury, Boston & Melbourne: Element
Books).
3. Ken Aitken Clinical Psychologist (AITKEN 2003, AITKEN 2004)
Two in-depth interviews held with Clinical Psychologist Ken Aitken, who specialises
in the assessment and treatment of children with learning difficulties including ASD.
He works for the NHS in Glasgow and as a private practitioner in Edinburgh and is
cited as a specialist expert on ASD. He is listed on the website of the USA-based
Autism Research Unit as being the only DAN! practitioner based in Scotland. He is
co-author of a book on ASD, Children with Autism: Diagnosis and Interventions to
Meet Their Needs, (Trevarthen, C., et al 1999. London & Philadelphia: Jessica
Kingsley)
4. Michael McCreadie Educationalist and Health Psychologist, (MCCREADIE 2004)
Director of Education at the Daldorch Residential School for Autistic children, run by
the National Autistic Society. An in-depth interview was held in January 2004 on
approaches to treatment in an educational/psychological context.
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5. DR, mother of a twelve year-old child diagnosed with Asperger’s Syndrome (DR
2004). An in-depth interview was held in January 2004).
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