Valerie Foley

Wellness, Recovery and the odd black cat…

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on June 1, 2013 at 2:58 am

Today, I watched this video again, because it popped up on my timeline and I hit play, like the trained monkey I am.

I rejected the school of thought in this video when Billy was a toddler.

I rejected it because I was encouraged to believe autism was not an illness, but a condition that I should just accept. So, I did not treat it. I managed it instead.

It is one of my biggest regrets.

When ‘actual’ illness became apparent in Billy (transverse myelitis, GI inflammation and now epilepsy), we jumped straight into treatment. As any human beings would. Illness needs treatment, right?

Put yourselves in our shoes – if you were told to just manage your four year old who was paralyzed from the waist down, mysteriously after a short bout of vomiting, would you go… Oh, OK? If you were told that your seven year old should just manage chronic constipation with no reasonable cause, would you go… Yeah, no worries? If your child was regularly woken from sleep with violent whole body seizures, would you just put a blanket on him and go back to sleep?

No, of course you wouldn’t. Of course we wouldn’t. And thankfully, his doctors wouldn’t either.

While I have massive issues with many of the medical experiences we have had, I want to be really clear about something.

The medical doctors will treat (to the best of their knowledge and ability) Billy’s medical conditions – auto-immune disease, constipation, reflux, epilepsy. A rare one will see, and maybe speak about, the fact that these conditions are occurring in the body of a person diagnosed with autism. They generally speak in terms of ‘coincidence’, a lack of luck or a series of unfortunate lightening strikes, but at least they notice.

We are now seeing (more and more) the emergence of an arm of the medical community that will speak louder and with medical authority about this. I for one am very grateful.

Because it might surprise you to know that, as Billy’s mother, I do not see any of this as co-incidence, I don’t believe in luck and I try as hard as I can to keep him safe from lightening strikes – real or metaphorical.

(As a side note, I’m genuinely shocked that doctors feel OK about using such non-scientific language, when their own first defense against autism parents’ concerns that vaccines/toxins/immunological events might play a role in their child’s wellness is… science. But I digress.)

Last month, at the MINDD International Forum, I was able to interview a few of the doctors who have changed the way I think about my son’s life. Actually, they are the doctors who affirm the parents who changed the way I think about my son’s life. But as this is getting a little bit too ‘lady who swallowed a fly’, I’ll clarify.

I spoke with Dr Martha Herbert, who appears in the video I linked above. I spoke with Dr Elizabeth Mumper, Dr Ron Erlich and Dr Robyn Cosford among many others. I spoke with Julie Matthews, the nutritionist who has forged a rational and evidence based path for so many autism parents. I spoke with incredible parents like Kris Barrett who have revolutionised their own professional practice in response to their own life journey.

The message from all these people was the same:
Making improvements in diet and lifestyle = improved  health
Treating underlying chronic disease = improved health
Improved health = improved functioning

Unsurprisingly, I came away thinking I am intensely fortunate for doing the work I do. More importantly, I really really really really wish I had been less cynical when this ground was being broken when Billy was tiny.

Because here’s the thing.

We are a canary family, in a whole generation of canaries. We are brighter and yellower than many, though by no means the most canary like.

Billy couldn’t be more medically autistic if he tried.

I was convinced when he was little that he was completely atypically autistic (and therefore inelligible for the raging hope that biomed offered) because he was not a behavioural kid. He didn’t tantrum. He didn’t spin. He didn’t rage.  I would look at these stories of kids yelling and biting and kicking at the world, and think, ‘my beautiful toddler is just autistic, he’s not sick. This stuff can’t help Billy.’

In the most perverse statement I will ever make, I will say Billy is fortunate to have become so very obviously unwell.

And before you diagnose me with Munchhausens by proxy, or call child protection, let me explain.

By separating Billy’s medical life from his autistic life, as we had done, we put ourselves in a unique position to see what happens when you treat the underlying medical conditions that manifest in an autism diagnosis.

When we treated his auto-immune illness with massive IV prednisone, his language improved overnight. Overnight.

When we treated his constipation and reflux (with diet, probiotics, enzymes and omega oils) his social skills improved. Noticably.

When we treated his seizures with anti-convulsants, his cognition took a huge leap.

When we changed our lives, we changed his ‘luck’.

I don’t give a crap if you call it recovery, or wellness or life… Billy’s existence is better. He is better.

None of these solutions are perfect, the journey will go on for his whole life, I imagine. But we’re on it. We’re driving it, and it’s making things better.

I spend my days talking to autism parents on various places on this journey. Some hardcore recovery journeyfolk, some dabbling in ‘the diet’, some adamantly opposed to the idea that autism is anything more than a roll of the genetic and behavioural dice.

Each to their own, I say. Despite drastic differences of belief and practice, I don’t know any autism parent who doesn’t think they are doing the best they can for their child.

In fact, I find it beyond ridiculous that parents would choose to use a difference of perception to reinforce the validity of their own path. Take yours and run with it, I reckon. All I ask is that instead of using the differences between your experiences and mine as a reason to reject my reality, I’d encourage you to learn from my experience.

I didn’t think my child was sick. I thought he was unlucky, and somehow we just had to live with that. We had to force him out into the world, with a few swings on an OT’s rope and some flash cards as weapons against a world that made him choose muteness over communication.

The pressure of doing that (or maybe time, inevitability, the manifestation of staring too many black cats in the eyes… whatever) made him really sick. When we treated the sickness effectively, the unlucky stuff improved too.

Billy still qualifies for an autism diagnosis, and I’m not thinking that will ever change. Billy will likely have lifelong support needs. But, Billy is much, much, much better and I have every hope that will continue.

He is no longer unlucky. He is on a path to wellness that can not help but improve his life.

I have no doubt that the path we are on now has genuinely recovered children from the medical conditions that can manifest in an autism diagnosis. I have no doubt that this path doesn’t ‘cure’ others. Just the same as some cancer treatments work for some people and not for others.

This isn’t a framework of magic bullets and miracle cures. It’s about health.

I rejected it because it seemed like the former, but it is actually about the latter.

Billy’s health is doing what health should – it is healing.

For those who take perverse pleasure in bringing down those who are courageous enough to take control of their child’s health, I say, who are you helping?

For those who say it’s dangerous quackery and parents should be warned against it, I say, do you think we are that stupid?

For those who think autism is just fine, I say, enjoy the ride and good luck to your grandchildren.

Eighty years ago, if your child developed acute leukaemia, you were told to try a blood transfusion and prepare your goodbyes. These days advances in medicine and more importantly in our understanding of what leukaemia is, mean the treatment and prognosis is entirely different.

We study, we learn, we change… in relation to all sorts of medical/social conditions, and until we genuinely accept autism as a medical condition, we cannot reasonably expect change.

In the meantime, I have grains to grind and nut milk to make.

And black cats to stare down. Just in case.

  1. Keep on keeping on 🙂

  2. ❤ ❤ ❤ I hear yah loud and clear! xo

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