parents guide to his sons vitual recovery from autism
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.
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.
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 put him on cows milk at 12 months and soon after things started
to go wrong. He was difficult at mothertoddler 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 wifes 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 shed 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, arent 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
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
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 childs 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.
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 elses 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.
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,
and gluten free diets
and mineral supplements
discussed influences of vaccinations
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 sons 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.)
suite of tests revealed
significant yeast/fungal overgrowth of the intestinal tract
gut bacterial dysbiosis
casein fragments in his urine
very high urinary IAG parameter (present in majority of autistics)
poor absorption of amino-acids, minerals and vitamins
to many foods (milk, soya at the top of the list)
liver and renal system
the plus side (if you can call it that) was that:
running peptide levels were within the normal range
metal levels were within normal range
first step to managing his disorders was to adjust his diet to be:
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):
support (ie dairy-free Lactobacillus treatment)
A, B and C support
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
after the initial suite of test results, we conducted the same tests again
to assess his biological position. The results were as follows:
levels in the intestinal tract were normal (as measured by metabolites
in the urine)
levels were within the normal range
measured casein fragments in urine (as to be expected on a dairy free
gut floral dysbiosis
liver and renal function
urinary peptide levels remained within normal range
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.
test results for our son indicated:
normal immune panel except for his CD8 T cells which were below normal
levels and a raised IgE level (explaining his allergic history)
viral IgG titers to measles (ie interpreted to be higher than the values
expected post vaccination).
extent to which the above results influence or explain our sons
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!
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