Valerie Foley

Archive for March, 2013|Monthly archive page

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.

Cheers,

Valerie

Fox meet henhouse

In Perceptions, Research on March 29, 2013 at 3:46 am

Fox meet henhouse

Because the CDC would genuinely say if they thought what they were recommending was wrong…

How does one prove the reasons why someone didn’t develop autism?

Through statistical models.

Don’t worry about those actual people. They don’t matter.

Sometimes things are so stupid they’re barely worth linking to…

In Action, Environment, Medical, Parent issues, Perceptions, Research, Supplements on March 22, 2013 at 10:12 am

On the same day the CDC grudgingly admitted autism numbers in the USA have hit 1 in 50 (1 in 31 boys), another couple of curiosities emerged.

A study, from Harvard University (no less) linking childhood abuse and autism and a woman’s chance of giving birth to a child who would eventually be diagnosed with autism. There were cursory attempts to link the physiological effects of childhood abuse (stress on the immune system, brain chemicals rhubarb, rhubarb) to the creation of a child vulnerable to autism.

Also, a Swedish study linking young grandfathers and autism. I lost the train that logically connected the young grandfathers and autism, while I medicated my son’s seizures and attempted to soothe him from the whole body attack that is a dog barking in the distance. Though I suspect I lost it, because it’s so effing ridiculous that giving it thought would be insulting to my synapses.

It’s hilarious how we are often accused of spurious concept connections as autism parents (oh, the autism/MMR thing is a complete coincidence of timing… oh, he would have learned to control his anger with maturity and not all those whacky diets and supplements etc etc etc) yet ‘science’ can draw the longest bows known to man, and we’re supposed to go, ‘Oh, of course, that makes total sense because someone with Dr in front of their name said it.’

Nothing to see here. Move on. Smile at the doctor or he’ll say you have Somatic Symptom Disorder.

The timing is suspicious. But there’s a bigger suspicion/question/brain conniption.

There is no compulsion currently on anyone to publish research. It’s a big bone of contention in research internationally. So why publish these studies? And why publicise them on the same day as the CDC admissions (oddly impossible to find on the CDC website)?

Can you say, ‘Oh look, an unusual looking butterfly!’?

Many folk way smarter and better connected than me have spoken about the importance of the international community waking up and smelling the autism flavoured coffee.

My rant for today is about why in heavens name we are persisting in ‘studying’ things we cannot control?

I have absolutely no control over the fact that both my grandfathers were well advanced in age by the time I was born. I also have no control over whether I suffered abuse as a child (OK, I know that’s marginally contentious and if you want to see how insanely dinosaur like some members of the Australian media are about issues like this, click here.)

I have control over… um, wow… just about everything else. What I eat, what I wear, what chemicals I use and consume, where I live, how I sleep, what I put in/on/around my body, and let’s not even start on the choices I make about my child. We have control over those things. We all do.

Why are we not studying them?

Where’s the funding for the ‘how about a year without E numbers?’ study?

Who’s the Bill Gates of NOT filling our bodies full of foreign substances?

We are being fed the information that it is important to feed us.

And we are living with the consequences of not questioning it.

Even my cranky old grandfather would have been able to see that.

Before he died.

Old.

We have to tell these stories…

In Action, Medical on March 9, 2013 at 5:00 am

We have to tell these stories…

This story, unfolding in the USA as I type, is horrific.

In short, a young man with severe autism is being denied appropriate (hell, any) medical care while being held in restraints. For his own safety, one can only assume, though the restraint injuries on his body (among many other abuses) tell a different story.

While the autism community, internationally, has rightly leapt to the support of this family, it’s important to remember that what’s going on there goes on, to varying degrees, everywhere. All the time.

How many of us have been told ‘it’s just autism’? How many of us have stared into the face of a doctor who has absolutely nothing to offer our children? How many of us have bowed to institutional medical pressure, despite every one of our instincts screaming, ‘This is not right’?

If the medical fraternity is happy to stand by and make ‘I don’t know’ faces in the wake of accelerating ASD diagnosis rates, then they should probably consider stepping up and working out how and when to treat autistic folk. If they are struggling now, they’re going to lie down and weep in five years or so.

The more we tell these stories, the less acceptable they will become. The more we tell these stories, the less they will happen.

End of story.

Medical Comorbidities in Autism Spectrum Disorders

In Medical, Research on March 6, 2013 at 12:28 am

Medical Comorbidities in Autism Spectrum Disorders

The link above is one of the most useful things I have ever come across in our years with autism.

When you hear, ‘there’s no evidence’ or ‘I’ve never heard of that’ or ‘no-one has researched that’, from a doctor who is ‘treating’ your autistic child… give them this publication or a link to it.

You can download it from this site, or contact Treating Autism in the UK for a PDF.

We need to talk about ‘autism’…

In Action, Parent issues, Perceptions on March 3, 2013 at 2:10 am

April’s a coming…

If we needed any proof at all that autism is a contemporary epidemic, we just need to look at the ever growing divisions between autism parents.

I think I can safely say, very few of us had any of this in mind when we gave birth.

In recent days, I’ve had conversations with other mid-range veterans about the need for a thinking space where people who are past the initial shock, the initial grief, and the initial ‘hooray for autism’ phases can communicate openly with each other.

It’s not that those things aren’t important for people to go through, in whatever sequence makes sense to them. It’s that once you are past them (if you get past them), your tolerance for their passivity and lack of inertia (and general tone, if I’m brutally honest) starts to atrophy.

It may be because you are facing increasing amounts of serious medical crisis (as opposed to accepting that all these pesky ‘symptoms’ are ‘autism’).

It might be because life is all of a sudden getting really real (in contrast to the ‘they might grow out of it’ mentality we are all lulled into… newsflash, btw, they probably won’t and it seriouses-up fast when they don’t).

It may be because in your own temperament, within your person, as a product of your upbringing, in the wake of a lack of hugging, (insert your own reason)… you are simply not a change agent or a fan of change agent type activity.

Doesn’t matter why, to me.

These things just are, and that’s what makes human diversity.

Moreover, in autism there are people who can talk and people who can’t. People who can live independently and people who can’t. People who need regular hospital care and people who don’t. It’s a spectrum disorder.

So the idea that those who need less, actively campaign against those who need more, is not just insane, it’s got a really ugly feel to it.

In other social movements, the stay in the same placers tend to stay in the same place, and the move forwarders tend to move forwards. Makes sense. In autism, the stay in the same placers seem to need to slow down the forward momentum, and I’m buggered if I understand why. Because if you are happy with the status quo, wouldn’t you just um, live it?

We all have different stories that inform our perspectives. It’s hard for all of us.

But some of us aren’t happy with it staying hard, and so we fight for the change we think is necessary. That change is generally the right to chose a more appropriate path, medically and socially, for our kids.

I reached a point where ‘hooray for autism’ was not enough. In fact, it was embarrassing. Actually, it has become something that drives me senselessly around the house looking for sharp objects and something non-living to use them on. But that’s just me.

The point that turned me was my son’s health. It was the frightening co-incidences in diagnoses and conditions among the cohort of autistic kids he has grown with. It was the growing realisation of the medical reality of this condition, despite years of convincing myself otherwise. It was, scariest of all, the startlingly blankly similar reactions in a growing legion of doctors who had no answers for us.

Actually, I lie. They had one answer, ‘It’s just autism.’

I would read stories about really sick kids, from autism parents elsewhere, and I’d think, ‘Wow, that must be awful.’ I’d seen similar patterns of crisis in overseas stories and thought, ‘Gosh, I’m so grateful that’s not what we are dealing with.’ And in the back of my head, I’m thinking, I hope that problem with pooping isn’t more serious than they say… I hope that ‘freak’ auto immune attack that paralysed him wasn’t related to anything else… I hope those staring spells and tremors don’t mean anything.

It was, and it is and they do.

If they (the nagging fears) don’t mean anything bigger for your child (or you don’t have them at all), then I think you are very very fortunate. And I’m very happy for you.

But here’s the important thing.

Your personal experience contributes to the massive growing pool of autism experience. It is not indicative of everyone who shares the experience of autism. The reality of your experience does not negate the integrity or validity of anyone else’s experience.

And yet, by virtue of the diagnosis our children share, we spend a massive amount of time acting as though we share the same experience.

Even more insanely, (and maybe because doing less is generally more attractive than doing more), we use mindless inspirational posters to throw shade over the seriousness of the condition. We place ‘love’ and ‘acceptance’ on one side of the scale and the demand for medical respect for sick children on the other.

So here’s what I’d like to see us talk about in April.

Count your blessings if autism is something to celebrate in your lives.

Then, open your mind to the fact that it shouldn’t be. Stick with this. Listen, even if your guts are churning. You don’t have to change your mind. It’s your mind.

All of us love our children. All of us accept our children. These things are not in question.

Here is what is in question, for me.

Is autism a random act of fate, genetic or otherwise? Or, is it something we all play a role in, like say diabetes, allergies, asthma, cancer? Yup, I went there. Cancer and autism in the same sentence. I question whether our choices, lifestyle, medical advice played a role in causing and exacerbating this condition in our son, and I question whether our societal choices play a role in causing and exacerbating this condition in a generation of kids. I don’t have all the answers, but I gain a lot from the search for them.

Does that make me love and accept my child any less?

I’m actually not going to answer my own stupid question, because it’s so damned ridiculous. What I will happily admit is that I was sucked in mightily by a passive acceptance manifesto for way to long. I promoted the ‘there’s nothing wrong with Billy and everything wrong with the world that judges him’ for a long time. And in that time, my son got sicker and sicker. If you want to follow that journey in painful (and sometimes witty) relief, download it for free here.

But that’s my journey, and everyone’s journey is different.

How is it I can say that, and yet others feel happy telling me my son’s story is (somehow, mysteriously and illogically) a random unfortunate series of events, and I am inventing logical connections because I have Munchausens or some other invented condition and so do all my crazy imaginary friends..?

As April approaches, I am bracing myself for a barrage of nonsense.

I am happy to report that my chosen perspective on autism advocacy is being presented now more than ever before on the information super highway. I am inspired and affirmed by the rigor and passion of the Thinking Mom’s Revolution. I am informed and challenged by Age of Autism. I am calmed and educated by Autism One. If there’s a fence, I choose to stand on their side. Do I agree with everything they say? No. Do I agree with everything anyone says? No. Does it stop me confidently standing on this side? No way.

If you identify on the other side, the ‘I wouldn’t trade my autistic kid for anything’ (whatever that means) side, it’s all good. I know you have a lot on your plate, and it’s not easy, and I’m guessing there’s a lot of comfort and focus in your side (as there is in mine).

Enjoy it.

And then, back off my turf.

It is hard enough to convince the actual doctors we see in our actual days that autism is not a good enough explanation for our son’s medical issues, or that adult doses of medication is not a good enough long term solution. We need change in this realm. If you do not, awesome, it’s no skin off your nose if I fight for it, so leave me to it.

Leave us to it. You have what you need. We are not competing.

It is hard enough to convince teachers and educational administrators that children with autism who are mainstreamed need complex and expensive support in the classroom. There is no other appropriate place for many of these kids, and they have to be in some kind of educational setting because that’s the law. So enjoy the fact that you need less, and support the fight for the kids who need more.

Or, even less confronting, just let the people who have to fight fight, and you do what you do.

The nonsense idea that just because your experience of autism means you see no need for change, then no-one’s experience of autism reflects that need, is just… immature. Politically and socially immature.

There is so much to question, so much to consider, so much to try… so much that can be done.

As much as I’d like to sit back and hum along to Simon & Garfunkel next month, I’ve got work to do.