The Autism File

Jonathan Tommey reports
Defeat Autism Now conference
In issue 2
Winter 1999 …
Jonathan Tommey reports
Our Diagnostic Testing for Billy
Fear of Flying
From Despair to Detox
Psionic Medicine
Testing, Testing,
1 - 2 - 3
Report from the 5th Annual Defeat Autism Now Conference
An Injection of Hope?
Diet and Nutrition
Gluten and Casein Free Recipes

Conference Report
Autism: An Allergic Disease?

Food for Thought
Autism File Letters
Secretin Test Results
The Son-Rise Program
Organisations and Contacts
Readers Page
Reports on sessions by
Concluding comments
The 5th DAN Conference was held at the Hilton Hotel, Cherry Hill. New Jersey USA on 2 and 3 October, 1999. It was a well planned conference which brought a number of the world’s leading experts together to discuss autism. Their definitions, findings, and theories about the onset of autism and what measures can be taken to help address the problem were presented.
The speakers were very thorough and detailed in their medical findings. There was still no concluding evidence as to what causes autism but there were a number of strategies put forward which did seem to point towards autism being a multi-faceted problem caused by immune system irregularities, gut problems, digestion, absorption and utilisation of foodstuffs with gut irregularities, inflammation and a link with viral infection, whether acquired or through vaccine.
It was only in the second day of the conference that any form of practical direction was given which in my opinion was very disappointing. The speakers were constantly referring to autism as a biomechanical issue which needs to be addressed before any other forms of treatment are utilised such as tutoring, and other forms of physical and mental therapies. I personally do not agree with this and I feel it is important to look at the whole picture and treat it holistically. I have summarised the key points raised by each speaker in my report.


Essential Fatty acids and behaviour in children
Essential fatty acids are important for two main reasons:

  1. They form all cell membranes
  2. They are precursors and act as communicators of information from cell to cell

There are two types of fatty acids;

  1. Omega 6 linoleic acid
  2. Omega 3 alpha-linoleic acid

Imbalances of essential fatty acids (EFAs) can lead to metabolic disorders, digestion and absorption. Some symptoms with deficiencies in essential fatty acids may be:

  • Excessive thirst
  • Frequent Urination
  • Dry skin
  • Dry, unmanageable hair
  • Brittle nails l Dandruff l Follicular keratonines

The following mental disorders can be caused by low EFAs:

  • Bipolar disorder
  • Schizophrenia
  • Depression
  • ADHD
  • Autism
  • Hyperactivity
  • Learning and behavioural problems

In the Western diet Omega 6 fatty acids are too high in comparison with the Omega 3 fatty acids and therefore there is a tendency to lack the Omega 3 fatty acids and not the Omega 6. These must be consumed within the diet as we cannot make them. So where do we get such fatty acids?

  • Omega 3 EFAs
  • Flaxseed oil (the best) l Hemp seed oil l Evening primrose
  • Canola oil l Soy oil l Soy l Kidney l Navy beans
  • Walnuts and walnut oil l Dark green leafy vegetables
  • Cold water fish, especially salmon but also in trout, mackerel and sardines

However, do not go out and start spooning Omega 3 essential fatty acids down your child. Before you start you should do the following:

  1. Screen for symptoms of EFA deficiency
  2. Determine the blood levels for those who are deficient

If imbalances exist determine etiology.
These oils can be given orally or rubbed into the skin. They are heat sensitive so do not cook with them. Mix fat-soluble vitamins in with them ie A, D, E and K and mix in with their food.



Paul Shattock is the director of the Autism Research Unit at Sunderland. There is a genetic element involved with the onset of autism but it is not just genetics. Something has changed in the environment which has caused it. If it were purely genetic then there would not be a dramatic increase in the number of autistic cases. It is an epidemic!
In 4,000 case studies into peptides or proteins in urine – 80% of autistic children tested have elevated levels. He indicated that vaccines played a major role in this ‘acquired’ autism. Soldiers going off to the Gulf war had received vaccines in a single day for anthrax, yellow fever, whooping cough, polio, rubella and others. Out of the 34 soldiers tested 32 had abnormal IaG levels and too many have autistic children. By the age of one year the average baby has had ten vaccines.
The MMR vaccine was introduced in 1988 and the number of autistic cases has grown astronomically since then. Experts deny it. It has been the parents that have shed doubt over the vaccine and it is only now that researchers and some doctors are seriously looking at this issue.
These are the characteristics of the new sub-group of autistics:

  • They are sociable and friendly!
  • They have a sudden development of thirst
  • They have an abnormal gait, tiptoe or are flatfooted
  • They have bowel problems

Their biological markers are different. The IaG levels in typical autistics is high. In normal children and vaccine damaged children they are normal
What factors could be influencing this?

  • The environment
  • Vaccination
  • Pesticides
  • Diet
  • Infectious diseases
  • Environmental pressures



In brief Dr Pangborn has been working with a number of leading researchers over the last three years to develop an enzyme which when taken into the gut will breakdown the proteins gluten, gliadin and casein. As many of you may know Paul Shattock at the Autism Research Institute at Sunderland has shown that these proteins are present in the urine of autistic children and are therefore not digested or broken down by the digestive enzymes in the gut before passing through the gut wall and into the blood system. These proteins are known as opiods and when they pass into the brain, act as a morphine like substance which basically ‘spaces out’ the child. By just taking autistic children off gluten and casein products ie wheat and dairy products there is considerable evidence that their behaviour and other limiting factors improve dramatically.
This newly developed enzyme, ‘Formula 2917 Multienzyme’, breaks down the gluten, casein and gliadin proteins before they pass through the gut wall. It is suggested that this does not mean that the child has to be overloaded with wheat and dairy products before using it. ‘Formula 2917 Multienzyme’ is to be used as a fail safe and should be given prior to taking food. It is only available from Klaire Laboratories and is sold as ‘Serin-aid’.
Klaire Laboratories, 140, Marine View Dr, Suite 110, Solana Beach, California 92075
Tel: 001 858-350-7880/800-850-8358
Fax: 001 858-350-7883



It seems that a majority of autistics have a problem with digesting proteins or peptides. The opoid peptide from gluten, casein and gliadin have the effect of reducing pain and increasing hyperactivity. These opiods are relevant to the autistic syndrome as they modulate the central nervous system and cause a condition that resembles that of schizophrenia. These opiods inhibit brain growth and pruning of the brain during adolescence before puberty. Normal brain changes will take place and therefore gluten/casein free diets are very important during the early years of brain development. Opiods permanently affect the permeability of the brain barrier. It is therefore essential that blood tests using antibody screens against foods are carried out to determine whether your child is allergic or intolerant to such foodstuffs.



There are receptors present within the brain that bind to certain peptides that flow within the blood. The opiate receptor, for example, is present and this is what opiate peptides bind to in order to give pain relief to the body. These opiate receptors are found within certain areas of the brain namely the hypothalamus, the unigular and hypocampus. These receptors are shared and used by each area of the body for example peptides released by the gut are used to transfer information to other areas of the body and therefore the receptors which they bind to are present not only in the brain but also the central nervous system and the immune system. This passing of information from one area to another is called chemotaxis. If you cut yourself then these messages through peptides binding to receptors will send out a signal for help and in turn the cut is surrounded by the correct cells in order to help heal and protect the wound from infection.
Viruses can cause autism. The virus (a peptide chain) is very intelligent and will bind to a receptor site where a harmless peptide could bind and enter the cell this way. This is molecular mimicry. It is in this way that viral infections take hold and can cause unbelievable damage if not recognised by the body’s own immune system.



Victoria gave a wonderful talk on the opportunities we as parents have to address the problem of autism. ‘We are not alone and we are not helpless’.

‘Never, never, never give up’
Winston Churchill.

She pointed out that autism has been in the past attributed to cold refrigerator mothers, as an incurable psychological disorder that reduces sufferers to second class citizens and as a lifelong disability. These statements are clearly archaic. There is a lack of biomedical evidence to prove that the cause of autism is genetic. Changes need to happen within the medical and psychological world to enable us to discover the real causes of autism. There are many individuals, parents and practitioners whose views and findings have been dismissed.
‘Our children are not hopelessly predestined to fail’. There must be positive change that will give a chance for our children to succeed. ‘Get tough – search for a way out’.
We need a more logical way forward with greater efforts and research into biology, physiology and science rather than psychology. We need to change the premise and move from:
desperation to activation …
fear to change … mythology to science. Adopt a new premise

  • Look at your child
  • Chart a road map
  • Plan interventions for change
  • Implement new beliefs
  • Eliminate sources of stress
  • Use knowledge and wisdom
  • Network with parents
  • Ask meaningful questions
  • Look for the light

Our children are depending on us.



There are a hundred things parents of autistic children can do, not only in the biomedical field but in educational ways as well. Some have tried lots of treatments and a number have a success rate of up to 30%. The DAN Protocol looks at biological, neurological and immunological issues but we do not need to be governed by such a vigorous protocol.
This is a high priority, but the benefits will change from child to child. There has been a 70% improvement on average from an open study. It is simple and worth exploring. The time it will take to know all of the risks is long. It is difficult to see which autistics will benefit most from secretin. There isn’t a pattern related to age, gender, and gut symptoms. He suggested that it be used at least three times before giving up. Variations do change from dose to dose with some children having good responses and others not. Significant negative responses are rare. He did say that you must explain to your child what is going on and to hold him/her tight to you for each infusion.
One should consider this possibility in all children with chronic problems. Antibiotic use, especially over the past ten years has a possible link with yeast overgrowths within children who have used them repeatedly. There is strong evidence that anti-fungals do work and nystatin is one of the most effective.
Dr Baker has identified that there is a certain type of child that is a good candidate for treatment – round faced, beautiful, soft with a cherubic presence.
No test can guarantee that the child will respond to anti-fungal treatment but he recommended the organic acid test at The Great Plains Lab to identify yeast derived metabolites. He also said that there is a likelihood of a Herxheimer reaction and many GPs take the child off the anti-fungal. This is a mistake – continue with the treatment.
Strong evidence supports improved behaviour on a gluten/casein free diet. Dr Sidney Baker’s advice is to use Paul Shattock’s urinary peptide test before you implement this diet, so you have a starting set of results, implement the change in the diet and monitor every few months to see the change.
Avoid foods to which the child is allergic or intolerant. Check IgG levels using blood for antigen reaction.
B6, Mg, Se, Zn and Essential Fatty Acids,
Acyclovir benefited one out of three. His advice is to get a viral screen done first to identify the viruses present. And definitely seek support and guidance from your GP.
Clean up the diet, sugar free, additive free, colouring free. Loading protein first thing in the morning is an important step with bacon, fish etc. Dr Baker’s suggestion is to give them dinner for breakfast and breakfast for dinner. For more information check out



How does secretin work?
The stomach contents empty into the duodenum (small intestine) and acidifies the intestine as the intestinal pH level drops. Receptors in the gut wall recognise this and trigger the release of secretin into the blood system. When the secretin comes back to the gut it triggers off bicarbonate release which in turn trigger pancreatic enzymes to be released into the gut which start digesting proteins. When tested with autistic children it was found that pancreatic release is greater in these children compared with so called ‘normal’ children.
Repligen are running a number of trials using secretin at the Medical Centre in Baltimore, The Royal Free Hospital in London and the Mayo Clinic in Rochester, New York. They will be looking at all related gastrointestinal issues before and after secretin use, such as gut permeability, opiods in urine, secretory response (ie pancreatic), acid channels (ie a possible release defect), and inflammation of the gut.
They will also look at weight, sleep, diet and appetite with the hope of seeing greatly improved results in both social and communication skills expressed by autistic children.
Secretin availability?
Fering is not currently available and the Federation of Drugs Association has not approved secretin to be available in the USA. (There is a requirement to fulfil market need for pancreatic function.)
The Solution is Secretin Repligen!
It has higher purity and is a synthetic not derived from pigs. For more information see



The immune system is our buit-in protection. It is interlinked in activity and communication with the brain and gut through neurotransmitters, enzymes etc.
The immune system has specificity and memory. It targets each virus and when the body’s immune system produces an antibody it keeps it in the body so it will trigger off an attack if the virus returns. The body has a number of defence (white) cells:
B Lymphocytes
These make antibodies against the ‘invaders’.

  • IgM – the first to hit a virus, it indicates an active infection
  • IgA – these line mucosal surfaces and as we have 400m2 of mucosal epithelium
    they are the largest of all lymphocyte sub sets
  • IgE – these are associated with allergies and they will be elevated if infection is insistent
  • IgG G1, G2, G3, G4 – these are all antibodies against protein, (carbohydrates go to G2)

Thymus derived lymphocyte of which there are two main types. These cells produce cytokines.

  • CD8 – kills viruses and virally infected cells
  • CD4 – helper cells, they help CD8 and have two derivatives:
  • TH1 – helps with defence against viruses, protozoa and fungi
  • TH2 – helps B cells produce antibodies

These kill off the infected cell. This cell will hit the infected cell before the T Cells.
Help lymphocytes respond.
Reduces inflammation.

Autism is now seen as a multi-faceted disease with a genetic factor, an immune factor and an environmental factor. The immune system within autistics shows a tendency to upper respiratory tract infections, increased allergy and increased gut yeast infection, and the presence of parasites in some cases.
Gupta has found a link with serum immunoglobulin in autistics. They have increased or elevated levels above the norm values in IgM and IgE and lowered levels in IgA and IgG1 with low antibody response to protein antigens. It is also apparent that CD3 and CD20 are reduced and there is a low response from TH1 as its levels decrease and its brother TH2 increases. If TH1 drops then the gut is open to viral infection and fungal overgrowth.
Therefore: Low IgA leads to poor gut protection which leads to absorption of antigens. This results in lymphatic hyperplasia, increased allergens, auto-immunity and a breakdown in myelin-based protein. Zinc affects the structure of chromatin, affects histone and condenses chromatin so it is vitally important in building the immune system. Thymic hormone makes the T cells and if there is zinc deficiency this will reduce the thymic hormone which results in a decrease of T cells, CD8 cells and B cell deficiency.



Dr Andrew Wakefield, based at the Royal Free Hospital in Hampstead, London has noted a new sub-group of autistics. Staistics indicate a 275% rise of autistic traits over the last ten years in the USA – a trend mirrored in the UK. He has identified that there are dramatic increases in gut disorders in these children. Lymphoid nodular hyperplasia is apparent in a large number with a suppressed immune system. The infection is clearly visible in the follicular dendritic sites. From his studies on the new autistics subgroup he has seen that:

  • CD3 is lower than normal in 65%
  • CD4 is lower than normal in 51%
  • CD8 is lower than normal in 47%
  • B CELLS are lower than normal in 12%
  • NK CELLS are lower than normal in 16.3%
  • Only 16% showed normal values

He has concluded that there is a greater risk of autism through exposure to the MMR vaccine and chicken pox especially if the parents have a number of allergies or the mother was exposed to measles during pregnancy. He again made a link with the TH1 and TH2 cells in that a viral infection pushes the TH2 cells to increase, which in turn opens the body’s immune system to environmental allergens.



For me this was the most intriguing talk of the conference. Dr Stephen Kahler spoke a great deal of sense. It recharged my spirit with fight and enthusiasm, for which I thank him.
Genes underlie all biology including behaviour. The biochemical processes that are 100% inherited are also 100% treatable.
What’s Biochemical about Autism?
All behaviour and neurological functions have a bio-chemical basis: neural transmission, receptors, responses, memory etc. There is no suggestion of major inherited immune deficiency.
Therefore, do genetic aspects of immune response play a role?
What are the acquired immune problems?
Stephen Kahler has pinpointed that there are a number of gastrointestinal aspects such as, disturbed function, coeliac disease, wrong amounts of digestive juices, poor response of pancreatic enzymes, poor liver function, bile deficiencies which influence bacteria dwelling in the gut and poor metabolism and excretion of toxic compounds. He also indicated that phenolsulphurtransferase P was a recessive gene disorder that is likely to be inherited with a 25% risk of recurrence in the child. It is important that doctors study the family history and the role of milk as a possible allergen in young children. He would like to see publications and studies on:

  1. Sulphation deficiency
  2. Immune system dysregulation
  3. Kutapressin

Things that can be measured and are they the things that are important?
Hyperactivity and autism have similar fatty acid deficiency. Biochemical disorders can be treatable. Nothing in autism is incurable. Brain cells are not being killed off in the early years. It is an approachable problem that can be resolved!
He listed a number of areas to consider in looking at the whole autistic picture.

  • Examine their genetic disposition
  • Look at the environmental component affecting them (ie vaccines and pollutants)
  • Determine the link between absorption of bowel products and autistic traits
  • Monitor their response to a gluten/casein free diet
  • Keep a videotape diary of their development
  • Study their behaviour responses to dietary change
  • Look for other toxins ie LSD
  • Monitor siblings closely as they are susceptible to developing autism
  • New children must be monitored carefully
  • More tests needed on blood samples, urine and stool checks
  • Screen at birth to identify children at risk ie adverse reaction to immunisation
  • Identify children at high risk prior to immunisation

Parents are in the best position as they know the child better than the doctor.
Believe what you see – don’t see what you believe!
The name is not the blame, always look for the cause.
If you don’t eat you don’t think! Remember doctors don’t know everything!




‘Nutrition means eat, digest, circulate.’
Signs of nutritional deficiency

  • Abnormal stools (diarrhoea therefore poor absorption)
  • Fatty acid deficiency, thirst, infections
  • Fungal overgrowth
  • Rash (especially around rectal area and whitish tongue)
  • Food allergies (black eyes, red cheeks or ears, nasal congestion)
  • Zinc deficiency (white marks on fingernails, asthma and frequent colds)
  • Probable vitamin B6 deficiency
  • Magnesium deficiency (hyperactivity)
  • Poor stomach acids
  • Probable vitamin B6 deficiency


  • Low glycemic
  • Good fats
  • Organic
  • No excitotoxins ie artificial sweeteners
  • Careful with the copper
  • Supplements with Zn (15mg at night), Mg, B6 (P5P), Ca, C and E
  • Balance Zn with Mn
  • Fatty acids good sources are evening primrose oil, flax oil, and cod-liver oil
  • Vitamins A, D, E and K



This was a strong talk on vitamin A and the benefits it can bring to an autistic child. Cod-liver oil was the number one source recommended.
The gut can become seriously inflamed due to gluten allergy and quite possibly due to an auto-immune response to measles. Vitamin A, D, E and K (fat-soluble) are important for this, along with Omega 3 essential fatty acids.
Vitamin A is good also for vision, cellular growth and differentiation, immune system especially T cell activation, gene expression transcription and modulates metabolism.



Two viruses at the same time will overload the immune system and if the immune load is too high we see:

  • Heavy metals
  • Abnormal liver detoxification
  • Essential fatty acid deficiency and zinc deficiency
  • Vitamin A deficiency
  • Viral infection and auto-immunity


  • The presence of heavy metals.
  • One or more toxic chemicals, ie pesticides etc
  • Liver detoxification

If the same exposure to toxins perinatally gets into the brain then direct injury to the brain can occur in the foetal stage as these cells release antigens into the body which sets the stage for autistic spectrum disorder.
These toxins can cause suppressed immune responses and in turn leads to a greater number of ailments. The dysregulated immune system then does not act as it should and the TH1 and TH2 cells ratios change. There is then an increased chance of allergies and infection. The transfer factor reestablishes the correct balance of TH1 and TH2 to reinstate the immune mechanism. A Polyvalent Transfer Factor taken orally at 200mg a day can aid the problems associated with measles virus, allergies, asthma, dermatitis and ulcerative colitis.


Jonathan Toomey
My concluding comments

It was great to see such a wide selection of speakers at the conference and I, as a parent, certainly did learn a great deal from it. I was disappointed that questionnaires were not provided for all parents with autistic children to be completed at the conference as I feel this would have provided further information important for data research. I would also like to see a centrally co-ordinated body, overseen by the Autism Research Institute in San Diego. They would then set up a structured research team which would involve all of the worlds leading researchers and doctors (many of whom I assume were present at the conference) and give them structured guidelines in further exploring the field of autism. The team would be given stringent guidelines and funding to conduct controlled studies in their own field but to link, like a web, all of these fields together. I don’t know if this is happening at the moment but it would certainly lead to a faster solution for our children’s problems.