Saturday, August 4, 2012

Exploring the unexplainable...

Autism is an odd concept.

It's a diagnosis. A word we all recognise. A concept we all understand.

Or is it?

This week there was another discussion on another facebook group about the 'truth' of autism management. Someone posted something with a heavy biomed focus. Someone else felt the need to warn everyone that this was based on 'poor science' and shouldn't be viewed. Drama ensued as the discussion wandered from laws of gravity (concrete science) to the unlikely existence of coloured unicorns (proof that science is concrete) to athiesm (proof that science is important).

The discussion ended in a stylish grab for victim status ('I offer an opinion and I get attacked' style) which is the mocktail of the internet debate drinks menu, in my mind. The information was forgotten completely, in a debate about what is valid information and who possesses the truth.

Anyone who spends any time on the internet at all (pretty much all of us) is used to this nonsense. Anyone who spends any time in autism world, is unfortunately routinely battered over the head and exhausted by it.

Who is right? Who is wrong? Who knows why? Who knows what to do? Who do we listen to and who do we ignore? How do we know how to choose?

If vaccine safety and biomed is on one side, and hear the diagnosis, shut up and think of England is on the other, then our journey has taken us, absolutely, from one side of the argument to the other.

When Billy was born, I was passionately pro-vaccination. I was a fervent user of massively toxic cleaning products because a clean house was the most important thing. I thought I ate well, but really I did not. I did everything my doctor told me to, because I had no reason to suspect they didn't know what they were talking about.

I vaccinated bang on schedule, and when Billy had adverse reactions (swollen tongue, ptosis and loss of reflexes at birth/8weeks/16 weeks, then developing german measles after the MMR at 13 months) I believed the doctors' assurances that this was uncommon but not worrying.

Even when he lost his previously acquired language and retreated socially, we rationalised that he was just growing up quiet.

Before Billy was diagnosed, we were referred to a paediatrician who was heavily biomed oriented. His approach scared us so much, we rejected the whole idea for years.

We did everything BUT veer off the mainstream path, in an effort to keep our son well. We did exactly as we were told, exactly what was expected of us as parents.

Then he developed Transverse Myelitis when he was three. And no-one could tell us why or what to do to protect him from further potential demyelinating, auto immune attack. Despite being asked to commit to a longitudinal study of vaccine injured children and admit personal liablity in our choice to vaccinate, we were given vastly conflicting advice about whether it was safe to continue to vaccinate further. We chose not to.

Then Billy developed chronic constipation and no one had any solutions. We were told it was common among autistic children. After trying the drugs, and realising we weren't comfortable with a young child needing medication to poo for the rest of his life, we started peering across to the world of complementary medicine.

Then Billy developed reflux, but no-one picked it, despite multiple trips to various specialists. The consensus - that we should remove his tonsils, despite a complete absence of tonsilitis. We complied, in the hope it would help him sleep (his principal symptom was coughing and snoring leading to disturbed sleep). We prepared him for surgery as well as we could, but the journey was rough.

Then a dentist realised it was reflux, and we were reassured by a GI doctor that reflux was common among autistic children. Billy had a violent reaction to the PPIs he was given.  We started seriously looking for natural alternatives to avoid the bilious vomiting spells that were somehow considered a viable alternative to reflux.

Then he developed seizures, which have also been written off as a part of autism.

You may be missing my tone here, so let me clarify.

We feel that mainstream medicine has let our child down. We think that is too high a price to pay for compliance.

We do not feel we are being irrational in our choice to clean up our lifestyle (no non-plant based cleaning products, no plastic, no pesticides, no toxic anything wherever possible in our living environment), clean up his diet (GF, CF, no colours, no preservatives, organic where possible) and to add a regimen of supplements under supervision (prebiotics, probiotics, Omega 3 and 6 oils, b12, specially formulated multivitamins). What we are doing is minimal, in reality.

We do not do anything dangerous. In fact we protect him, way better, that mainstream medicine ever did.

And here is why.

He is not a statistic to us, but he is to the doctors. In medical terms, he is one of the unlucky few. He is collateral damage. He is one of the ones who will need to rely on the herd, for immunity and for basic care all his life.

He is not a mystery to us, but he is to the doctors. This might give the impression that they are carefullly collating clues to solve his medical quandry. This is not what is happening. Mysteries and medicine do not mix outside of TV medical dramas. Mysteries are met with phrases like 'we don't know' or 'it's the hand that God dealt him' or worse, 'don't worry, Mum'.

We do not think it is right to leave our child languishing in physical ill-health, never mind precarious mental health. In the absence of anything but short term pharmaceutical solutions from the mainstream, we have learned to carefully choose the complementary. We still see a battery of mainstream specialists, and we listen very carefully to what they have to say. We consider their solutions and then we look for less potentially damaging, long term alternatives.

We read everything we can get our hands on. We consult as widely as we can. We seek information and opinion constantly.

This is not an ignorant journey. It is not a passive journey.

As far as I can see, our decisions to blithely vaccinate and operate, in the past, were far more ignorant and passive. Definitely, they were far more damaging.

I understand people's need to hold onto the traditional way of doing medical or health related things. It's what we know. It is promoted as being researched and tested and validated. It is supposed to be safe.

But, for our child, it was not safe. The doctors agree, even though they admit they don't know why. We know too many children for whom it was not safe. Too many kids with a similar history, who had skills and lost them or who had health and lost it.

To be honest, I would give anything to feel comfortable about giving Billy any kind of medication. I would give anything to feel safe about his ability to withstand environmental toxins. I would give anything to have a clear picture of what his future health might be.

I need to know what to do. Mainstream medicine has done a great job of showing me what NOT to do.

So... when people throw 'truth' around, like it (a) exists and (b) is universal and (c) irrefutable and (d) unchangeable, I don't lie down and take it.

We believed the 'truth' and it hurt our child.

So now, we seek alternatives.

Some of it has validated research behind it. Some of it has generations of accepted wisdom behind it. Some of it makes a lot of sense.

More sense than continuing to do what the mainstream told us to do, because that clearly backfired.

The upside? We see a lot of positive change in Billy (and ourselves). We have a holding pattern of health and function. We will continue listening, learning and hoping for the best.

The downside? We often find ourselves fighting back a tide of self-righteous know it all, opinionated (primarily virtual) blowhards who have not lived what we have lived. For reasons only known to themselves, they need to assert their rightness, assuming that people who do not adhere to their path have blindly slurped some guru's kool-aid and signed up to intravenous snake oil.

I hope, more than anything, that some time in my life, we can really say we know more about autism so these ridiculous conversations can stop.

I hope we know why autism happens, and what it is medically, and how we can manage it and how we can prevent it. I hope we can stop having ridiculous, pointless discussions about who is right because we know what is right.

We need to get rational about this.

Autism parents who want their children to be healthy are not the enemy.

We are parents, who want our children to be healthy. 

No hidden agenda, no mystery.

I have seen my child struggle, in deep distress, in life threatening situations. I don't just want to minimise the chance of this continuing for him, I also want to ensure future families do not have to endure similar things (if it is possible to avoid it).

If the internet blowhards had any sense at all, they would be thankful that there are people who are willing to stand up and do this section of the hard work for the rest of the community. No-one is asking them to join in. They have the luxury of standing by on their medical high ground, and watching as others discover a potential parallel path.

But that's just it.

People who lurk on internet boards and shut down any point of view but their own are not interested in change. They are interested in being right. And when they can't be right, they can play victim and call in the moderators. And when they don't get joy there, they troll about for a new place to be right.

I am quite happy to admit I have no idea if I'm right. I just know what we did under the direction of the doctors (and social pressure) was wrong, and I can't in all conscience risk doing that again.

Our journey is not uncommon. If it's not familiar to you now, it will likely be in the near future. This condition strikes more children each year than paediatric AIDS, diabetes and cancer combined.

The current approach to management and treatment and prevention of autism might seem OK to some folk. It does not seem OK to me, and it won't until we acknowledge the medical nature of the condition. It won't until we acknowledge the role of the environment and it won't until kids like Billy are no longer considered mysteries.

While this is happening, it would be great if someone could invent a button on the internet that zaps people before they think arguing with invisible strangers is a productive way to spend their time.

Actually, let's do this one first.


The Bright Side of Life said...

Your posts always inspire me. Even though I now sit on the fence, I am right behind you all the way. People need to be flexible in their thinking and if they can't be, then it would be best to keep their lips closed!

Madmother said...

God, I love you!

I am sick of being shut down, abused, and packed into the "stupid woman, hysterical mother, keeper of coloured unicorns" box.

I have a child who changed dramatically after his MMR.

I am a tertiary degree-qualified, former mainstream advocate, wife to a man with an honours degree in science, mother of a child who changed before our very eyes.

Actually, too detailed to write in a comment, here:
is our story.

As I said, reading this post, hearing your voice echoing so much of how we feel... My heart is filled with adoration. I know, scary, stalkerish, but when you have been flogged by the mob, and decried by the massses, it is such a joy to have someone say "here, let me help you up and we'll walk the same path"...

Anne said...

I have no experience of autism and just stumbled across your post, but it is not the only area where controversy rages. My son (who with his wife and daughter live with me) buys SKEPTIC magazine. As a science-educated person, I rarely found it controversial. But they had an article saying the anti-vaccination crowd was wrong. No bad experience with vaccination, I moved on,

The next article was about the supposed non-effectiveness of anti-depressant (same results as a placebo!). That made me sit up and take notice because anti-depressants had transformed my life (Ritalin greatly helped my son when he was young too).

Conclusion: the medical community simply does not know. Remember, at one time they were blaming schizophrenia on "cold mothers". There is still much to learn. It is too early to say what is going in with some of these problems. You're not a flat-earther if you disagree with SKEPTIC!

Best wishes to you and your family.

Anonymous said...

- I wish you evry success with your chosen path - I have trekked my daughter (now 11) to all sorts of people - we have done speech therapy and Ot and hearing and sight tests .Her siblings older and younger seem to win at anything they choose and so do all her friends. School was / is so hard - crying and tantrums for hours .....I didnt have the courage that I could manage and thanks to the wonderful teachers she has had who now have allowed her extra time to get things perfect.
Our journey has been helped by a complete diet change ,protein especially animal and fats and vegetables ,,, no grains whatsoever !
She was never diagnosed with anything but also nothing is ever 100% excercise has also helped and interestingly her siblings concentrate better in class.

Good luckk