Valerie Foley

Posts Tagged ‘Parents’

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.

Dear people who study autism…

In Research on March 29, 2013 at 6:47 am

It seems like you are floundering a little.

I’ve been looking at the range of studies about autism that get published each year, and the thing I notice the most is how few of them focus on… well, anything useful.

By useful, I mean meaningful, practical or even actionable. By useful, I mean things that could change the game, rather than reinforce the current state where head scratching and head shaking are about the most positive signs of forward movement we have. To be honest, a lot of the studies I do see (and I see a lot) are beyond illogical.

We’ve known autism has been around for quite a while now. We’ve been doing this long enough to have a fair idea of the range of useful interventions and therapies. We’ve known about (and somehow ignored) the need for specific and meaningful services for adults with autism for a long time.

Quite frankly, you’ve been studying these things for a long time and you haven’t had much meaningful impact. I can say this because nothing in my life as a parent of a child with autism and a range of supporting medical conditions has changed/shifted/exploded in response to a study. Not intervention choices, not school based services, not medical advice, not diagnostic practices. Nothing, in almost 10 years.

Also, you guys seem to argue a lot about the diagnosis rate. It seems obvious to me. You get a diagnosis, your doctor/government/school/parent knows about it. Ergo, you get counted. I’m not sure what the mystery surrounding numbers is, but it seems to consume a lot of your energy. Is it wrong for me to suspect that if you decided on one reliable method of counting and just did it, you could? I’m thinking maybe the argy-bargy is a smoke screen, and I’m appreciating it less and less every day.

We’ve seen a bunch of suggestions about causes, and a bunch of reasons why none of those suggestions can account for everything. This back and forth process might make you feel better, but it does nothing for us out here. Genetics, environment, vaccines, diet, deficiencies, lifestyle choices… all seem like plausible influences on the autism rate. It seems like we’ve seen a lot of talk, but absolutely no action.

Over the last decade, nothing much has been done about prevention, either. No advice, no concrete suggestions beyond a couple of vague ‘perhaps you should take folic acid’ type of things (handy that folic acid is a recommendation in most countries and has been for a while…). It amazes me, being one of the parents swept up in this that you’ve still got nothing. I can’t imagine why not.

The latest figures show 1 in 50 in the USA, 1 in 62 in Australia, 1 in 100 in the UK. Big, fast increases over the last decade. Something’s going on. What is it?

As a parent, I have a bunch of ideas, but you guys are the ones with your fingers on the decision making buttons. So, let me hit you with a few suggestions.

– buckle down and look at environmental issues and autism diagnosis rates. Do it in a few places. Look at a few different issues (chemical use, pesticides, GMOs, food quality, pollution). Compare those results. Recommend some change.

– start a longitudinal study of pre-pregnant women in a few locations. Follow them for ten years. See what happens in their offspring. Make some recommendations about what we should be doing offspring-making wise.

– suck it up and do an accurate vaccinated vs unvaccinated autism numbers study. Do it carefully, break it down, make some changes.

– while I’m inviting trolls, study what happens when unvaccinated people have their own children. Tell us what you think that might mean for the general population.

– compare immune function in autistic people and non-autistic people. Then protect the people who need protecting with good solid advice about medicines and lifestyle.

– get a bunch of families to clean up their lifestyle, and leave a bunch of families doing what they want. Compare autism rates in both sets of families over time. By a bunch, I mean 100 000s of thousands across a number of countries. Tell us what we could change in our own lives.

– see what happens if you optimise gut function in a large scale sample of children over a long period of time. Give us some recommendations, instead of leaving us to work it out for ourselves.

– take every single person who reports an adverse reaction to a vaccination, and study their immune system. Find the similarities. Work out how to identify a vulnerable immune system and give them an alternate vaccination schedule. See what happens then.

– do a worldwide study of children with autism and… GI issues, seizures, mito, metabolic disorders. There’s a lot of them, all willing. Just ask.

– study the Vitamin D levels of people with autism, their parents and their siblings. Study what happens when they change their levels.

– do a world wide survey of autism parents. Ask anything you want. We’re a talkative bunch. We have lots of medical files.

These are just a few suggestions, and I’m sure that every autism parent I know has a bunch of much more impressive ideas. We have these suggestions, mostly because we need answers. We are not content accepting that our individual kids are acceptable collateral damage for what? A random role of the mental dice? A statistical anomaly? A surge in skill among doctors?

It’s not OK. If it was your kid, it wouldn’t be OK. It is your world, and it can’t be OK.

I’m sending you this set of suggestions because I want to you know we are not fooled by your tactics. We can see what you are doing. We are angry, and with very good reason. We are focused and smart and we know how to read a study.

We’d like to be able to read one that actually meant something significant to us.

Help our children. Prevent more children from being diagnosed. Treat those who have been diagnosed with medical respect.

If it was possible to write that gesture where I point to my eyes and then to you, and then back to my eyes, then back to you… I would.

You can pump out all the smoke and mirrors you like, but we’re not going away.