The Autism File

Testing Testing
A parent’s guide to his son’s vitual recovery from autism

Our son is now three years and five months old. Last November we received the first diagnosis that he was on the autistic spectrum. The general consensus was that he was mildly afflicted. Confirmation of the diagnosis started a year-long programme of investigations and therapy such that now, he no longer exhibits all the impairments that would contribute towards an autistic spectrum diagnosis. Though he has not been fully normalised yet, he has begun to exhibit imaginative play, is very interested in other children and adults and his language skills are considered almost age appropriate. His residual difficulties include lack of compliance and attention problems; but we are working on them.

The aim of this article is to tell our story, including commentary on the tests we conducted, the results, the treatment methods adopted and the benefits seen (or otherwise). I should stress that this is our personal view of the above issues based upon the experiences and difficulties presented by our child. The perspective is one of having no medical qualifications or experience. However, I have an open mind, a basic understanding of the essential sciences, exposure to a multitude of practitioners and treatments and an urgency of focus that few experiences could ever engender. With that introduction, I will start with a brief history of our child; one that may be familiar to many of you.

History

Our son was born in 1996 and had a fairly eventful first year. He was riddled with profound blotchy eczema, had a series of continuous ear and chest infections, mild asthma and was allergic to pets and house dust. He also had occasional rashes on his buttocks that were not nappy rash. He received the usual round of DTP vaccinations and a couple of months after his first birthday, the MMR.
He interacted with us and though he had not started talking, he smiled and waved bye-bye and good night; all the non-verbal communication features we expected.
We put him on cows’ milk at 12 months and soon after things started to go wrong. He was difficult at mother–toddler groups, generally quite hyperactive and had still not started talking; in fact he also began to lose his non-verbal communication. The only activity he indulged in was drinking cows’ milk by the gallon. My wife’s experience of child development and education alerted her quite early to a possible developmental problem and at 18 months when she first suggested autism, I remember laughing at her as if she’d gone mad. It was nothing other than a blip in his development I told her; plus boys talk later than girls and are more boisterous anyway, aren’t they?
She wisely ignored me and placed him under the care of the community paediatrician and a team of speech and language therapists. A diagnosis was not forthcoming in the early months as he was so young, but when he passed two years old and had poor eye contact, little non-verbal communication and no language, the alarm bells began to ring at a level that even I had to take notice.
I cannot remember when the loose stools started, but the foul smelling, mucus ridden substances were far from normal (apparently constipation is another possible outcome in some children). His appetite fell through the floor and he began to focus only on a few specific foods; those that were dairy or sugar related. He then developed dark eye circles, pale skin and a distended stomach.
He had also not yet developed a preference for either his right or left hand. Other more worrying features were that he experienced mild tremors and would be obsessed by automatic doors (at shopping centres) and traffic lights, jumping up and down and rotating his hands on his wrists in glazed excitement.
At two years five months he received the first diagnosis of an autistic spectrum disorder; it coincided with a deterioration in his health from a child who was mostly on the 90th percentile in weight to one who barely featured above the 25th percentile.
Something had obviously happened to our son, but we did not know what. However, we knew that he was not born autistic, and that his health problems were somehow directly related to the reason why he was not hitting his developmental milestones.
Therefore we considered his problems to be a disease, not a congenital disorder; and diseases can be stopped. What I also felt early on was that we were up against the clock – a young child’s brain is like wet cement, you can influence it early on, but once it matures and hardens, the battle gets harder. Therefore what ever we were going to do, it had to be now.

Autistic Spectrum Disorders

his term confused me for a long time. It means different things to different people and if professionals vary in their opinions, what hope do parents have of comprehending it? My understanding of it is as follows:
The spectrum ranges from severe autism (Kanners), through to Asperger Syndrome and then on to semantic-pragmatic difficulties and then generally being odd or eccentric. The high functioning autistic is likely to be Aspergers, and the child who is considered high functioning on the spectrum is likely to be eccentric. I know many practitioners would disagree, but as I say, this is just my interpretation of what the spectrum means; which is probably as valid as anyone else’s given that there does not appear to be a universal truth. My reason for focusing on this topic is that my son scored a 4 (if eccentricity is 1 and Kanners is 10) at two years three months (nb my own rating). And he was getting worse. In fact a formal speech/language evaluation cited that at two years three months, he had the receptive-expressive language of a 10-month-old.

The Treatment Process

As I mentioned, our son had an apparent biological problem as well as a developmental one; therefore we only focused on reviewing the current biological interventions available and did not pursue any of the psychological intervention techniques such as Lovaas etc. I felt that if I could correct his biology first, it would go someway to addressing his developmental problems and only then would he be ready for any psychological intervention, if at all.
The first step on our investigative road was that we contacted the National Autistic Society, the Allergy Induced Autism group and browsed the Internet. Within days we were drowning under a myriad of theories and approaches, such as:

  • Casein and gluten free diets
  • Vitamin and mineral supplements
  • Leaky gut syndrome
  • Candida caused autism
  • Secretin
  • Media discussed influences of vaccinations
  • plus many others.

Loose stools, constipation, IBS or some other type of gastro-intestinal disorder seemed to be common among a certain sub-group of autistic patients. Given our son’s medical history, we decided to follow the route of investigating the condition of his intestines, his absorption levels, prevalence of running peptides and the extent of any fungal infections.
(A useful handbook for us at this stage was one written by Dr W Shaw.)

The suite of tests revealed

  • A significant yeast/fungal overgrowth of the intestinal tract
  • Significant gut bacterial dysbiosis
  • Elevated casein fragments in his urine
  • A very high urinary IAG parameter (present in majority of autistics)
  • Very poor absorption of amino-acids, minerals and vitamins
  • Intolerant to many foods (milk, soya at the top of the list)
  • Stressed liver and renal system

On the plus side (if you can call it that) was that:

  • Gluten running peptide levels were within the normal range
  • Toxic metal levels were within normal range

The first step to managing his disorders was to adjust his diet to be:

  • Dairy free
  • Gluten minimised
  • Sugar minimised

We initially had him moved on to soya milk support but his intolerance to the soya milk protein grew rapidly and so we switched to the Nutramigen formula milk, designed for casein and soya protein intolerances. Palatability was an initial problem, but after a two-week trial of nerves, our son relented and accepted the new milk. We then placed him on the following medication (under medical supervision of course):

  • Nystatin anti-fungal treatment
  • Probotic support (ie dairy-free Lactobacillus treatment)
  • Vitamin A, B and C support
  • Amino-acid supplements

Over the next two months his language began to kick-in, progressing from no words to over 100 single words and better eye contact. However, his stools had not improved significantly.
We considered a stronger anti-fungal course and moved him onto Diflucan. Within ten days on this treatment, his behaviour worsened significantly and his skin adopted a yellowish hue. However, we rode through it as we were told that a Herxheimer reaction is common in these children after the onset of anti-fungal therapy, and as the fungal spores die off, they release a toxin which causes the increased irritable behaviour.
The three-week Diflucan course temporarily settled the problem of his loose stools and ushered in a further boost to his language and social development. However, after this period, we reverted to the Nystatin anti-fungal treatment as it is a milder treatment method than Diflucan. The following three months involved a trial and error period of attempting to finalise the correct dose of Nystatin to regularise his stools but it seemed to be a losing battle as his stools gradually worsened yet again.
It was then that we were advised to use anti-bacterials in support of the anti-fungal treatment as apparently in some cases, attacking the fungal problem alone allows anaerobic bacteria to proliferate in the resultant gut ‘power vacuum’. A short two-week course proved this to be the case and his stools settled again.
His behaviour and capacity to learn was directly linked to the quality or otherwise of his stools. As these gradually began to settle, so his communication and social skills improved

Six months after the initial suite of test results, we conducted the same tests again to assess his biological position. The results were as follows:

  • Fungal levels in the intestinal tract were normal (as measured by metabolites in the urine)
  • AG levels were within the normal range
  • No measured casein fragments in urine (as to be expected on a dairy free diet)
  • Reduced gut floral dysbiosis
  • Absorption levels normalised
  • Normalised liver and renal function
  • Gluten urinary peptide levels remained within normal range

We also conducted a suite of additional tests, summarising his immune profile and viral titer tests for the MMR (our own curiosity). The tests were conducted because much of the current research and theories indicate that the immune system is central to the aetiology of autism and that most autistics exhibit multiple weaknesses in their immune profiles. It also makes sense to me as only a dysfunctional immune system could explain why the body cannot keep in check harmful substances like fungi and yeast; only a poor immune system would allow so many ear infections; and only a stressed immune system would allow the allergenic response of the intestines when exposed to dairy milk and gluten and other foods.

The test results for our son indicated:

  • A normal immune panel except for his CD8 T cells which were below normal levels and a raised IgE level (explaining his allergic history)
  • Raised viral IgG titers to measles (ie interpreted to be higher than the values expected post vaccination).

The extent to which the above results influence or explain our son’s condition (ie as the originating cause) is not for me to say and is a theory to prove (or otherwise) for those concerned circles of the medical profession. What I can say is that his regression occurred after 12 months, soon after the introduction of dairy milk and the MMR. However, he did exhibit problems in his first year (ear infections, allergic reactions etc) so whether the MMR was a trigger, or whether it was the DPT, or a combination thereof or whether it was an entirely different invasion to his immune system, who knows? But someone had better find out pretty quickly!

Conclusion

To conclude, our son is still on anti-fungal treatment, probotic/vitamin support and anti-bacterial therapy, as well as his dietary restrictions. The aim is to reduce his management to milder medication, ie Nystatin and herbal remedies for gut bacterial control. How long he will need to be casein free remains to be seen.
However, it is a small price to pay for the changes that we have seen in him over the past year. He now has 100% eye contact, no repetitive or odd behaviours, no tremors, has almost age appropriate language (and is communicating well), asks questions and has imaginative play. He is interested in anything or anyone but is still egocentric as his social skills are about 6 – 9 months behind. The resulting compliance issues at nursery have been managed by teaching support. Seeing him riding his bike with our neighbours’ children, joining in the fun, is a stark contrast to the child who, less than a year ago, was not interested in us or his baby brother, but only videos, traffic lights and automatic doors.

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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