A Report of the Parent Initiated Use of Dietary Interventions and Nutritional Supplements as a Treatment for Individuals with an Autism Spectrum Disorder

Margaret E. Lynch

Abstract

In the absence of an understanding of the causes of autism spectrum disorders, it is not surprising that numerous attempts at treatment have been the subject of much debate amongst researchers, parents and caregivers of people with autism spectrum disorders and the people themselves.

For many years parents have reported using dietary interventions and nutritional supplements in an effort to ameliorate the symptoms of these disorders and to improve the quality of life of the individuals and their families. Despite an increasing amount of research overseas into the efficacy of these treatments, there is no scientific agreement about their value or safety. Furthermore, there is very little information available from Australian researchers and parents.

This paper provides a brief overview of the literature relating to these treatments.

It also provides details of recent research undertaken to:

• identify the range of dietary interventions and nutritional supplements initiated by parents who are currently clients of the Autism Association of South Australia;
• document the parents' sources of information about these forms of treatment ;
• explore their reasons for using the treatment; and
• provide details about reported changes in the behaviour of the individual with an autism spectrum disorder whilst using the treatment.

A semi-structured interview process was used to seek current and retrospective information about the parent initiated use of dietary interventions and nutritional supplements for their child with an autism spectrum disorder (n=16).

Results indicate that the use of dietary interventions and nutritional supplements was common amongst this group of parents. Those parents who continue to use some form of these treatments for their child with an autism spectrum disorder, report high levels of effectiveness of the treatments in relation to improvements in their child's behaviour and general health. However, trained health professionals were rarely involved in the assessment of the need for each treatment, planned logical implementation and monitoring of outcomes. Discussion of the parents' perceptions of these, and other treatments, provides insight into the motivation and reasoning that leads parents to try these alternatives. Future areas of research are considered.

Introduction

Autism spectrum disorders are a behaviourally defined syndrome that may have a variety of etiologies. Despite much research over the last forty years researchers have yet to conclusively identify the exact causes of this disorder and the most effective treatments for individuals with an autism spectrum disorder. Both behavioural and biological studies have generated sufficient evidence suggesting neurobiologic etiologies; however, no specific biological markers have been identified (Rumsey, and Denckla, 1987, cited in Schopler and Mesibov, 1987).

Children with an autism spectrum disorder present medical practitioners with a challenge to "do something" to cure or alleviate the disorder while the parents and caregivers are faced with bewildering and often conflicting claims about the merits of different interventions.

"We weren't searching for a miracle... we were just looking for something -- anything -- because to do nothing had become intolerableÉeach time I hear of something new... a little spark inside my brain briefly ignites and I wonder once again... what if?" (Muller, 1993, p.6).

Professionals involved in researching biomedical treatments are bound by certain ethical requirements in relation to experimentation with dietary interventions and nutritional supplements and cannot place themselves in a compromising position by advocating therapies which lack scientifically valid support (Shattock, P., 1995).

Many different treatments have been claimed to have a dramatic impact on people with an autism spectrum disorder. These have included dietary intervention, nutritional supplements such as vitamin B6 and magnesium, pharmacotherapy, intensive behavioural programs, music therapy, pet therapy, holding therapy, sensory integration therapy, auditory integration training (AIT), the Option method, the Higashi schools and Daily Life Therapy and the Doman-Delacato method (Howlin, 1997). However, "no single treatment modality has been shown to be effective in curing autism" (Tsai, 1997, p. 104).

Aims of the Study

This study aimed to:

• identify the range of dietary interventions and nutritional supplements used by the parents of individuals with an autism spectrum disorder who are currently clients of the Autism Association of South Australia
• document the parents' sources of information about these forms of treatment
• explore their reasons for using the treatment
• provide details about reported changes in the behaviour of the individual with an autism spectrum disorder whilst using the treatment
• identify any links between the amount of time elapsed between diagnosis and the use of dietary interventions and/or nutritional supplements.

Significance of the Study

From contact in a professional capacity with parents of individuals with an autism spectrum disorder, the researcher is aware of their considerable interest in and quest for knowledge about successful treatments to improve the quality of life of the individuals and their families. Significant investigation is being undertaken into proving or disproving the efficacy of dietary interventions and nutritional supplements (Bidet, Leboyer, Descours, Bouvard & Benveniste 1993; D'Eufemia et al., 1996; Knivsberg, Reichelt, Nodland, & Hoien, 1995; Reichelt et al., 1981; Shattock et al., 1990; Wakefield et al., 1998 cited in Whiteley, Rodgers, Savery & Shattock, 1999).

A survey of pharmacotherapy of this syndrome (autism) reported that 5% of patients receive nutritional supplementation "specifically advocated for the treatment of autism" (Aman, Van Bourgondien, Wolford & Sarphare, 1995, cited in Findling, Maxwell, Scotese-Wojtila, Huang, Yamashita & Wimitzer, 1997, p. 468).

The outcomes of this study provide valuable insight into the perceptions of parents of an individual with an autism spectrum disorder about the role of dietary interventions and nutritional supplements in a treatment plan to ameliorate the symptoms of this disorder. An understanding of these perceptions is important for:

• understanding the motivation and reasoning that leads parents to choose this treatment
• the identification of the parents' sources of information about this treatment
• monitoring treatment using dietary interventions and nutritional supplements
• the development of professional training for support workers whose role includes providing information to parents
• the identification of future areas of research.

Shattock, P., (1995) advocated that "In the absence of any orthodox, biomedical intervention which has substantial, totally proven, benefits to people with autism, it is natural for parents and carers to explore all possibilities" (p.1). Studying the use of dietary interventions and nutritional supplements using the narratives of the research participants provides opportunities to understand their use in an integrated individualised treatment plan.

Literature Review

Many books and articles have been written about the treatment of autism spectrum disorders. The majority of these focus on behavioural modes of treatment. Reference to the use of dietary interventions and nutritional supplements within this literature tends to be limited. Much if the information was obtained from the Internet where there are numerous sites devoted to this topic. The vast majority of these sites are from overseas, in particular, the United States of America, England, France, Denmark and Sweden. Despite extensive searching the researcher was not able to access any Australian based sites devoted to this topic.

Particular attention is given to explaining the theoretical background of these treatments and to examining the claims made on their behalf. An historical overview of the development of these treatments is provided to facilitate an understanding of the controversial aspects of the use of these treatments.

The original observations that the use of dietary interventions and/or nutritional supplements could have an effect on people with an autism spectrum disorder came from parents and caregivers, a number of whom noticed totally independently, that their children were adversely affected by certain foods (McKelvey, 1997; Seroussi, 2000). These parents and caregivers tested their hypotheses by withdrawing the food and then reintroducing it in to their child's diet. The offending foodstuffs varied considerably between individuals. This is not surprising, with a spectrum disorder such as autism and the variability inherent in human beings.

Certain products were frequently reported as having adverse effects on the behaviour of individuals with an autism spectrum disorder (Edelson, 2002; Knivsberg, Reichelt, Nodland & Hoien, 1995; Shattock & Whiteley, 2001). The two major foods were gluten, the protein from wheat and certain other cereals, and casein, the protein from milk, which has a molecular structure that is very similar to gluten. Citrus fruits, chocolate, pigmented foods, paracetamol, salicylates, tomatoes and aubergines all have been implicated in individual but not all cases (Shattock, 1995; Shattock & Whiteley, 2001).

Dohan (1966) cited in Shattock and Whiteley (1999) first put forward the idea that there was a connection between gluten and schizophrenia but because his evidence was largely circumstantial his ideas were dismissed. The zoologist Panksepp (1979) cited in Shattock and Whiteley (1999) noted the similarities between the behavioural effects on animals of opioids, such as morphine, and the symptoms of autism. Panksepp proposed a mechanism whereby people with autism have elevated levels of opioids, which occur naturally in the Central Nervous System of humans. He suggested that, for some reason, the comparatively high levels, which are known to exist in the developing foetus, do not drop to the much lower levels normally present in the developing infant.

Norwegian researchers Reichelt, Knivsberg, Lind and Nodland (1981) cited in Knivsberg, Reichelt, Nodland and Hoien (1995) decided to investigate the case made by parents about the benefits of dietary intervention and wrote a paper, which was also supportive of Dohan's ideas. Reichelt et al. produced evidence of abnormal peptides in the urine of children with autism.

In the early 1980s Members of the Autism Research Unit of the University of Sunderland (Great Britain), particularly Paul Shattock cited in Lewis (1994), also produced evidence to support Reichelt's findings. "In the urine of about 50% of people with autism there appear to be elevated levels of substances with properties similar to those expected from opioid peptides" (p. 2). Shattock had been investigating the role of dietary peptides in the behaviour of individuals with an autism spectrum disorder since the mid 1970s. The theoretical basis to explain the effect of these dietary peptides is referred to in the literature as "the opiod excess theory of autism" (Shattock, P., 1995; Shattock, R., 1995; Shattock & Savery, 1994; Whiteley, Rodgers, Savery & Shattock, 1999).

In the mid-1990s a number of studies were published, especially by European investigators, which indicated that many people with an autism spectrum disorder respond abnormally to the casein found in cow's milk and to the gluten found in wheat and other cereal grains (Bidet, Leboyer, Descours, Bouvard & Benveniste, 1993; D'Eufemia, Celli, Finocchiaro, Viozzi, Cardi & Giardini, 1996; Knivsberg, Reichelt, Nodland & Hoien, 1995; Reichelt, Knivsberg, Nodland & Lind, 1994).

Biomedical research has also been carried out in other several other areas. Crowell and Crowell (1992) suggested that some individuals with an autism spectrum disorder have malfunctioning livers, which in turn affects their metabolism. The altered enzyme production of the liver changes the absorption and utilisation of nutrients through the gastrointestinal lining. They believe that dietary intervention eliminating foods that contain specific glutamine rich and sulfur amino acid proteins, as well as those containing gluten and casein, can compensate for enzymatic deficiencies. However, Crowell and Crowell (1992) state, "This is no 'miraculous cure'. This is a THERAPEUTIC INTERVENTION to accommodate the individual's specific metabolic deficiencies and proportional excesses" (p. 17).

Shattock and Whiteley (1999) also investigated the impact of foods containing salicylates, for example, almonds, corn, apples, capsicum, onion, on the production of enzymes essential for the maintenance of intestinal integrity. However, as yet there is no scientific evidence to support the efficacy of removing these foods from the diet of an individual with an autism spectrum disorder, or for the addition of enzyme mixtures to their diet.

Interest in the deficiencies in the Phenyl Sulphur Transferase systems of individuals with an autism spectrum disorder came about as a result of parental observation and study (O'Reilly, 1993; Waring, 1993 cited in Shattock, P., 1995). Parents observed that particular foods such as apple juice, citrus fruits, chocolate and paracetamol resulted in the appearance of undesirable behaviours in their children. According to Waring (1993) and Alberti (1999) cited in Shattock, P., (1995) the sulphotransferase systems are functioning sub-optimally in people with an autism spectrum disorder. There are a number of metabolic consequences when this occurs which could result in low uptake of certain vitamins and other nutrients from the intestines and affect intestinal permeability.

Shattock, P., (1995) warned that "since all these dietary exclusions [apples, oranges, citrus fruits, chocolate and paracetamol] tend to be in addition to gluten and casein removal, it is difficult to ascertain precisely which elements of the exclusion are of relevance to any reported improvements" (p. 4).

Crook (1984) cited in Shattock, P., (1995) suggested that the presence of yeast infections in the gut and, perhaps, other parts of the body, could result in autism. Many people with autism are infected with candida albicans organisms (Shattock & Whiteley, 1999) but the relationship, in terms of cause and effect is not proven. Antibiotics, by destroying the natural, benign microorganisms inhabiting the intestinal tract, encourage the proliferation of certain microbes, especially candida albicans. If the immune system is depressed, as a result of opioid peptides or the frequent use of antibiotics, these organisms will flourish and can create holes in the gut lining.

Only recently has it become acknowledged that fats play a very significant role in the metabolism and development of the body. Shattock and Whiteley (1999) have suggested that any intervention involving Fatty Acids should involve a balanced approach of what are termed omega 3 and omega 6 acids. "One element in which there appears to be universal agreement is the use of Evening Primrose Oil" (Shattock & Whiteley, 1999, p. 7). The benefits may be a result of evening primrose oil containing acids, which are required to maintain intestinal integrity. Shattock and Whiteley go on to say that appropriate balances in the intake of fatty acids "could help to maintain the integrity of the blood brain barrier" (p. 7).

The proponents (Gualtieri, van Bourgondien, Hortz, Schopler & Marcus, 1981; Rimland, Callaway and Dreyfus, 1978, cited in Tsai, 1997) of "megavitamin" therapy claim that "mega" doses of certain vitamins will ameliorate or prevent mental disorders such as schizophrenia and autism.

Two studies have reported that individuals with an autism spectrum disorder showed significant improvement during vitamin B6 treatment (Gualtieri, van Bourgondien, Hortz, Schopler, & Marcus, 1981 and Rimland, Callaway & Dreyfus, 1978, cited in Tsai, 1997).

Subsequently, there have been three double-blind crossover studies of the use of vitamin B6 in people with an autism spectrum disorder conducted by Ellman (1981); Jonas, Etienne, Barthelemy, Jouve and Mariotte (1984); Martineau, Barthelemy, Garreau and Lelord (1985), cited in Tsai (1997). Tsai (1997) concludes that the "use of vitamin B6 and magnesium may be helpful in some individuals with autism. However, there is no solid evidence supporting such a suggestion. Larger and long-term studies are needed to draw a final conclusion" (p. 116).

Other dietary interventions and nutritional supplements used as treatment for individuals with an autism spectrum disorder are also reported in the literature. Shattock (2000) and Shattock and Whiteley (1999) discuss the impact of amino acids and the use of 5-Hydroxy Tryptophan (5HTP) and L-Glutamine. Rimland (2002) is "firmly convinced that DMG (dimethylglycine) is helpful to a substantial proportion of autistic children and adults" (p. 1). Horvath (1996), Rimland (1999) and Sandlin (1999) cited in Mehl-Medrona (2000) have been investigating the use of secretin as a treatment for individuals with an autism spectrum disorder.

Despite the fact that treatment options for autism spectrum disorders have evolved significantly over the last twenty years, "parents navigating treatment decisions are faced with conflicting information, sometimes controversial therapies, and the lack of specialised therapists and support networks" (Weaver & Hersey, 2002, p. 20). Hart (1995, cited in Quill, 1995) discussed the drive of some parents of a child with an autism spectrum disorder, to pursue every treatment reported in the media or related to them by a friend or relative, or discovered in their search "to believe that they can make things better for their child" (p. 57).

The role of dietary intervention and nutritional supplements as a treatment for individuals with an autism spectrum disorder has been the source of much discussion for the last thirty years. Increasingly researchers are using rigorous scientific methods to investigate treatment options. Understanding the experiences and expectations of the parents/caregivers who utilise these treatments for their child is warranted, as this may facilitate a further dimension to the search for an effective treatment or at least, an amelioration of associated health issues that appear to exist in subgroups of individuals with an autism spectrum disorder.

Methodology

For this research, an exploratory, descriptive and narrative research design was chosen, to seek retrospective and current information on which to base a report about the parent/caregiver initiated use of dietary interventions and/or nutritional supplements for individuals with an autism spectrum disorder in the South Australian context.

Studying the use of dietary interventions and nutritional supplements using the narratives of the research participants provided an opportunity to understand their use in an integrated individualised treatment plan.

A semi-structured interview format was considered the most appropriate approach to obtain an in-depth description of the use of parent initiated dietary interventions and /or nutritional supplements as a treatment for individuals with an autism spectrum disorder. Purposive sampling was used to invite 100 parents/caregivers of an individual with an autism spectrum disorder who were clients of the Autism Association of South Australia in 2002 to participate in this study. Participants in this research were the 10 parents who agreed to be interviewed face to face, one who provided written information and took part in a telephone interview and another parent who volunteered to participate after being told about the research by one of the participants. Because no major changes were made to the interview schedule after the pilot study, the responses from the two pilot study participants were also included in the data.

The interview schedule was divided into six sections and contained 22 questions. Initial questions sought detailed descriptive data about the child or young person whose parents have used or are using dietary interventions and/or nutritional supplements for them. These sections were:

1) demographic characteristics;

2) diagnosis and related conditions;

3) general health; and

4) behaviour.

The other two sections of the interview schedule sought information about the:

1) types of dietary interventions and/or nutritional supplements used and the timeframe of use; and

2) parents' perception of the benefits of these treatments, reasons for initiating their use, source of information, time elapsed between diagnosis and initiating the use of these treatments and other treatments or interventions used.

Results

1.0 Demographic characteristics

Information about the demographic characteristics of the children who were the subject of the interviews is presented in Table 1. Two of the parents interviewed had two children with a diagnosed autism spectrum disorder; therefore the number of children who are the subject of this research is 16.

At the time of the interviews, the average age of the children was 7 years 1 month (range = 3 years 1 month to 18 years 3 months). The ratio of males to females was 7:1.

Table 1
Number of children in each age category

2.0 Diagnoses and other related conditions

Table 2 summarises the information about the diagnosis of the type of autism spectrum disorder, who made the diagnosis and other known diagnoses and medical conditions.

The research involved 11 children with autism, two with autism and intellectual disability, two with Asperger syndrome and one with high functioning autism. Six parents reported that the diagnosis was initially made by a medical practitioner and then was verified by the diagnostic team from the Autism Association of South Australia. In the data this is recorded in both the Autism Association and medical practitioner categories (refer to Table 2). Two participants reported that a naturopath had made an initial identification of autism spectrum disorder but that they were referred to the Autism Association of South Australia for an official diagnosis.

The young person with tuberous sclerosis was the only one reported as having epilepsy as well.

Table 2
Diagnosis and other related conditions

3.0 General health

3.1 Present state of health

In response to the question about their child's health now, none of the participants reported that their child's health was poor. The participants' responses were all indicative of "good" health. The parents of 12 of the children are currently using dietary interventions and/or nutritional supplements.

3.2 Health problems in the past

Table 3 summarises the participants' responses to the question about the health problems that their child has had in the past.

Table 3
Health problems in the past

4.0 Diagnosed allergies or food sensitivities

Table 4 shows the diagnosed allergies or food sensitivities of the children as reported by the parents. It also provides details of who made the diagnosis.

Two respondents reported that their child does not have any diagnosed food allergies or sensitivities but that they believe they are allergic to, or sensitive to foods containing gluten and foods containing casein in one case, and foods containing artificial colourings and flavourings in the other case. Seven respondents stated that their child did not have any diagnosed food allergies or sensitivities.

Table 4
Diagnosed allergies or food sensitivities and source of diagnosis

5.0 Behaviour

Table 5 provides a summary of the participants' responses to the questions about foods or drinks that they think affect their child's behaviour and the changes observed in their child's behaviour when these foods or drinks are consumed.

Table 5
Foods or drinks reported to affect behaviour and examples of observed changes in behaviour

Continued...

International Journal of Disability, Community & Rehabilitation
Volume 3, No. 4 Canada
www.ijdcr.ca
ISSN 1703-3381