Memoir

Where’s my girl?

Milli was born able to hold her head up, and kept this ability. She had sheeny, topaz eyes, dark hair and I loved her so much I let the doctor in the hospital give her a Hepatitis B vaccine containing mercury because I couldn't bear to think of my girl catching a disease.

As an infant, she laughed at everything. She carried armloads of teddy bears, kissing and cooing over them. She said her first word – "tickle" – at four and a half months. She drew scribble pictures and pushed cars around the rugs. She made us smug, our strange, clever girl.

But from an early age she began to get ear infections, oral thrush, diarrhoea. She weaned herself completely after her very first taste of solid food. At sixteen months she walked everywhere on her knees and shirked other children. She had phobias about heights and eyes. Words got twisted: "Come out" became "Muck out" and disappeared. By two years old I had to count every word she'd ever uttered to meet her age-appropriate milestone.

That's when I realised she was no longer speaking at all.

"It might be hearing," the day-carer said, optimistically.

In a dark room with puppets, our confused girl let out volleys of screams. She was terrified of the space, the acoustics, the Pooh Bear in the window box on the wall. The hearing test was abandoned. We were told to bring her back at age three.

Meanwhile, we were chasing her everywhere: across busy roads, out carelessly opened doors. She would dangle from my hand in shops, and when I went to pay she would run off, out the automatic doors, across the car park. She would run back and forth along the house in the garden bed and get covered in scratches. She wouldn't let us touch her face or change her clothes; we've never managed to brush her teeth. She would giggle in the dark, in bed. It went on for hours, from midnight till dawn. One night the slider got left open and I found her running in circles on the lawn in pitch darkness, hysterical with joy.

Our family could not imagine the breadth of it. "Oh, she's just wilful," they'd say. "She's just got selective hearing." Even when they said "She's in her own world" nothing clicked. None of us knew anything about autism. Nobody had heard of Rett Syndrome.

 

DEVELOPMENT IS MEANT TO BE ONE-WAY, the passing of milestones on the road to a normal future. Who would ever have thought it could do a U-turn? Not our parents or grandparents, who survived world wars and influenza and bread and dripping sandwiches, who ran farms and businesses and produced offspring who went to university and became professionals.

"She's definitely on the spectrum," the paediatrician told us. He said to boil and filter all water, don't let her drink in the bath, don't let her play in sandpits, avoid soy. He referred us to a study on gluten and casein and their possible role in producing brain damage in gut barrier compromised children. What causes the gut barrier compromise remains mysterious, but in a field without targets you aim at anything. "A child of two can obtain all necessary nutrients from a gluten– and casein-free diet," he reassured.

The prohibition on soy left us with rice milk as a possible drink, as our girl had stopped drinking water. What is in rice milk? The package said brown rice, a calcium compound, filtered water, a little sea salt. "Calcium enriched" became scant comfort to us as Milli's degeneration not only continued, it picked up speed. She developed a habit of flip-flopping cups and spilling the contents; she stopped being able to drink anything but rice milk from bottles. A few months after diagnosis, she was refusing food. Our plump, curly-headed laugh-a-lot began to waste away.

Anyone who has not been close to a disabled child can only go by what he or she can see. The children sitting in chairs being wheeled through malls are those tiny glimmers of what it means to be disabled. We see them being tended to and believe our society capable of care; we don't see what happens most of the time. When you become a parent of a severely disabled child, all notions of a caring society go out the door. There is no grand scheme of help, just hoops to jump through for occasional handouts that have gradually lost the ability to fulfil needs. Demand for "early intervention" outstripped supply a decade ago: in our town, there were two autistic children ten years ago, and now there are fourteen with the same staff. An hour a week in a group session at a schedule of six weeks on, six weeks off was like being given band-aids for a broken leg. And nobody could help us make our girl eat.

Every meal, she would crumble food to mash and flip it away. At times, for days on end, she ate only rice cakes – if we were lucky, with a little Brazil nut paste on top. We knew rice cakes were scant nutritionally, but nothing we did got her to eat anything else. I was reminded of an early conversation with a paediatrician at ASPECT, the New South Wales organisation geared to helping parents deal with autistic spectrum disorders. I had asked him about gluten– and casein-free diets, and he had told me that, in his view, behavioural "improvements" in autistic children may well be because they simply lacked the energy required to do all their former routines.

Our girl walked with a pronounced limp, lopsided. She became unable to use her left hand at all. She developed a hand-banging habit and had bloody, calloused knuckles. We had to glue a swath of carpet to her bedside wall to limit her injuries, but that didn't stop her banging on other surfaces. She shrank; her baby clothes began to fit her again, and then they swam. In the bath, she no longer played with toys or moved her legs or splashed – she just banged the bath. She never looked us in the eyes and when I picked her up from child-care she would cling to whoever had her in their arms, unable to recognise me as a person, let alone her mother. At night, trying to give this fading child a little nourishment – rice milk, or egg custard, or water, or anything – she would scream and thrash until we held her still and shoved the teat in her mouth and forced her to drink.

I used to say: "It's like she's being poisoned." She would walk into doors, fall over, bump her head on everything as though becoming blind. She would crawl under the dining bench and sit up quickly and bang her head, cry, bang her head, cry, bang her head again, until I dragged her out, and then she would crawl back under and begin again. There are no ways to describe the pain of this – for me, for her.

 

THEN ONE DAY I LOOKED IN HER EYES and there were eyes in her head but she was no longer in them.

An acquaintance referred us to a new paediatrician. She told us his approach was based on research from a specialist autism clinic called the Pfeiffer Treatment Center in the United States, and she very kindly had us moved up the list. The day after our appointment was made, the doctor went on 60 Minutes and his waiting list became many months longer. In autism, people flock to any hope at all because there is so little help in the mainstream medical world.

The new paediatrician explained that Pfeiffer practitioners use a program of supplements to address tangible abnormalities, based on research into the difficulty autistic children have producing metallothionein, a protein responsible for copper-zinc balance, yeast control, heavy metal excretion and some aspects of digestion. All of these seem to be problematic in autistic children, and blood testing of Milli found that she had an extremely abnormal copper-zinc ratio.

The Pfeiffer approach is a step program with a long "primer" period. In the month between our introduction to Pfeiffer and our next appointment, Milli suddenly stopped eating and drinking at all. For four days she went without food or water; syringing liquids into her mouth only made her choke. She grew pallid and floppy and screamed day and night. I thought she was going to die.

I had read articles by doctors claiming that autism symptoms are identical to those of mercury poisoning, and articles about the effectiveness of a process called "chelation", or the detoxing of heavy metals. I had read articles that said chelation was deadly dangerous, and many that said it was safe and effective. Our new paediatrician had mentioned that one of the goals of the Pfeiffer Clinic program was to get the child's body chelating itself. Since he was based in Sydney, we rang a local paediatrician who had seen Milli to ask whether he would help us to undertake our own chelation. He called it "fringe dweller stuff" and said no.

I went to a local chemist shop and bought a container of Alpha Lipoic Acid, a detoxing product. I tried a capsule myself first to see what would happen, then I gave my girl a capsule's worth in a syringe. Every day I gave her one 100 mg capsule in the morning and one at night, and every day I watched for any change.

In two days she began to eat again.

By two weeks her limp had gone.

When we syringed her supplements, she no longer gagged and sputtered as she always had in the past. We realised that the reason she had been unable to eat and drink was because she had not been able to coordinate her tongue and throat to swallow.

 

HEAVY METALS ARE NOT A MEDICALLY ACCEPTED CAUSE of autism in this country; if they were, you could take your child to hospital and ask for tests. You could expect heavy metal chelation, or the removal of metal toxins through various chemical agents. Indeed, the process of chelation is considered dangerous because of the likelihood of important metals being removed alongside toxins. The possible efficacy of detoxing has been under-examined. According to the Department of Health and Aging: "There are no published peer review publications regarding the efficacy of chelation agents for the treatment of autism."

A diagnosis of "autism" contains its own strange loop, its own double-bind. Because it is autism, that mysterious illness of probable genetic origin, it is not investigated. You don't get brain scans or blood tests on demand – not unless your child is actively epileptic. You get six-month waits for diagnostic examinations by certified psychologists before you're eligible to join the queue for "early intervention" to begin to learn how to change your entire life to become a therapist. Medically speaking, with autism you get little more than palliative care.

The situation with Rett Syndrome seems even more pernicious: being closely connected to an apparent gene mutation, the idea of environmental factors tends to be wholly set aside. Rett Syndrome is like autism, but with greater motor deterioration and a more hopeless outlook. Affecting far fewer individuals than other autism spectrum disorders, and almost wholly affecting girls, it has been connected to a known mutation in a particular gene, and either Rett Syndrome or something approaching it has been effectively engineered in mice. However, Rett Syndrome was only diagnosed from 1966, and it is hard to believe that a syndrome affecting one in ten to fifteen thousand to such an extent could have been unnoticed until then without environmental factors having a part to play. Meanwhile the hunt for autism genes goes on.

At this time, American lawyers are running class-based actions against the makers of Thimerosal, a mercury compound used as a preservative in some vaccines. Environmental lawyer Robert F. Kennedy Jr is scathing about both manufacturers and vaccine distributors, including his own government, for allegedly covering up data connecting Thimerosal use to autism. The official vaccine websites that reassure about Thimerosal often draw their conclusions from studies taken in countries like Denmark, where the children vaccinated may have been much older than newborn. While these studies do seem persuasive in showing that falls in autism rates do not necessarily (at least in the short term) accompany Thimerosal withdrawal from most vaccines, it seems possible to the informed lay reader that dosage amount of a given toxin is less important than blood-brain barrier underdevelopment or indeed viral blood-brain barrier compromise.

These are issues for further research, but nobody in Australia seems to be investigating the subject. Professionals are still quibbling about whether rates really are rising. This issue in particular has been mentioned by Norman Swan of ABC Radio National's Health Report as perhaps arising from the conglomeration of like-upon-like – that is, semi-autistic individuals preferring the company of similar minds and thereby concentrating any genetic tendencies in their offspring.

Once again, we're stymied by our genes. But how can you separate poisoning from genes if every generation since the 1930s has been exposed to vaccinal mercury delivered at different rates and times? A focus on genetic causes tends to take place to the exclusion of inquiry into environmental triggers, and even identical twins do not always share autism. Rett Syndrome seems a peculiarity in the entire gamut of psycho-socio-neurological disorders in that the faulty gene appears to have been located. But even here there is room to question outside factors: what if that genetic mutation would be harmless, or less harmful, without mercury? Without going beyond genes, we will never know.

The similarity of mercury poisoning symptoms to autism spectrum symptoms has been well plumbed – even the obscure traits like hand flapping and toe-walking and the one-to-four boy-to-girl autism ratio. The symptomatic comparisons make chilling reading; even alongside the most jargonised refutations of their logic, somehow the congruencies remain. I see my girl with her flapping hands and small head; I see her toe-walking and gaze aversion; I see her struggling looks over her shoulder as she tries to filter out what seems to terrify: a shadow, a glance, the chaos of words. I remember the obscene not-thereness in her eyes when I picked her up from child-care before we began chelation. I even remember her opaque sheeny eyes when I brought her home after the Hepatitis jab, and the way she couldn't seem to relax her neck yet had such floppy lower body at three months of age.

However, mercury is not all there is to know about heavy metals and a possible link to autism. Aluminium is neurotoxic: in tap water levels it has been known to cause dialysis dementia in kidney patients whose gut barriers were bypassed. Healthy guts screen aluminium out; autism is known to involve gut barrier compromise, thereby theoretically allowing dangerous aluminium levels into the body. Also contained in vaccines as an adjuvant, aluminium is commonly elevated in autistic children. As it happens, aluminium may have a peculiar relationship to mercury. Doctor Donald W. Miller Jr MD argues: "Doses of mercury that have a one percent mortality will have a hundred percent mortality rate if some aluminum is there."

Whatever the environmental exposure, it seems possible – and certainly worthy of greater inquiry – that the inclusion of both mercury and aluminium in the infant Hepatitis B vaccination might result in a greatly exacerbated set of mercury-related outcomes. At least one infant Hepatitis vaccine contains both metals, albeit in low doses.

Aside from her possible vaccinal exposure, laboratory tests of Milli's rice milk showed it to contain aluminium levels "probably hundreds of times" higher than recommended water levels. Whether or not this exacerbated some underlying condition or was even unrelated to it, our girl's intake of dietary aluminium appears to have been inordinately high, and certainly the introduction of rice milk as a staple coincided with the most profound period of her regression. If Donald W. Miller is right, then rice milk in packaged form might be the single worst dietary decision we ever made.

But it's not the last of our faulty decisions. Apart from aluminium our girl has been exposed to arsenic and chromium through the use of treated pine decking, upon which she played almost every day. When her hand-banging was at its worst, she spent hours on the deck, grinding her knuckles into the boards. Did this infiltrate her blood and combine with other toxins? We'll never know, but our move into a house near virgin rainforest, meant to give the children clean space to play, may have been a shockingly bad idea.

After detoxing seemed to reverse the most dramatic part of Milli's decline, we had her hair tested for metals. The results showed relatively high arsenic, aluminium and chromium loads. Hair elements testing has been rightly queried for the absence of a firm "exposure" base – in other words, how do you compare "bad" levels of aluminium in hair if you don't know "good" levels? Nevertheless, the results remain disquieting. Milli's arsenic hair level put her at the 100th percentile, which means that her hair content was among the highest that the laboratory had seen. She had relatively high chromium, manganese, aluminium and lead. If these results are inadequate by virtue of their not being underpinned by research into what constitutes "safe" levels, then I want to ask the medical profession why baseline research isn't being done.

 

OUR GIRL WAS LOST FOR SO LONG, I can't describe how I felt when she came back. I was picking my father up from the airport and went to put her in the car and strap her in. As I bent forward, Milli grabbed my face and pulled me around to face her. She started laughing, holding my head in both hands, looking into my eyes.

Nearly two years of chelation and vitamin B12 injection therapy later, she hovers at the eight– to twelve-month intellectual development age, but she eats well, drinks regularly, laughs, enjoys games, presses buttons on a musical toy and seems to love being around people. And even though her diagnosis is probably about to shift to Rett Syndrome, at nearly four she is still able to walk with only a minor lopsidedness in her running gait, unlike many Rett girls who cannot walk at all. Whether our interventions have been instrumental, or whether Rett's distinct phases of collapse – which may include periods of the lessening of symptoms – are muddying the field, she does seem to be staying with us.

Indeed, maybe our last and most mistaken intervention – based on the belief that Milli's condition was autism, not Rett Syndrome, and therefore not wholly "genetic" – remains the only one that has erred on the right side. Maybe there is more to autism research than genes.  ♦

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