Wednesday, July 18, 2012

What am I here for?

Over the last three days, I have found myself engaged in hefty discussions on Facebook.

I quite like a good discussion, and really like hearing what other people have to say. I am amazed and delighted, again and again that there is such a diversity of opinion and perspective in autism world.

It definitely makes me think about what I am doing - as a mother, as a writer, as a human being.

So, I'm going to try and encapsulate where my head and heart are at, today. In one post.  I'm absolutely certain it will change, as it has so dramatically over the last eight years or so, but hey...

Here are my core thoughts right now.

1. There are clearly many kinds of autism.
For what its worth, I reckon there is a relationship between what we called autism, when Kanner was making his first notes and what is called autism now. I believe autism has morphed and developed in a lock step kind of relationship with the world in which it exists.

I'm not dropping any bombshells here, clearly.

The challenges are two, with this situation.

One is that we talk about autism like it is one thing, with one unified voice and one unified approach. That is clearly impractical, historically and medically.

The second is that autism is diagnosed by checking off behaviours on a list. Behaviours, as we all know when we unleash the cupcakes at a birthday party, do not come from nowhere. The current process of diagnosing autism does not, in any way, consider the biological origins of said behaviour, it simply notes their presence.

Why don't we change this?

Why don't we test the bejesus out of as many people with autism as we can? Why don't we pool all those results and try and learn something from them. Why are we not stepping up as an international community and doing something to understand what the hell we are dealing with?

Why do autistic people have a 'mental illness' diagnosed under the DSM? How do we know it's not a disease? How do we know it's not an environmental reaction? How do we know how to make it better, when we don't know what it is?

I do not see other disorders being encouraged to STFU and just accept that it happens. I see TV campaigns to halt the progress of other disorders. I see appeals for research to unlock the mysteries of disorders. I see celebrities encouraging us to fight other disorders, especially ones that randomly strike children.

Autism has talked itself into two fairly polarised positions. Fight like a banshee (which I am leaning towards a little more every day) or stick your head in the sand (for various equally valuable self preserving reasons).

This gets trickier when we see that one side (the sandy one) is led by adults with autism who have the skills to articulate for themselves. The other side is led by parents who have watched their children develop autism.

You don't have to be Sherlock Holmes to work out that we are dealing with (at least) two very different disorders. Unless parents in the 1950-70s were complete arseholes who didn't care to react as their kids lost skills and/or stopped developing in front of their eyes.

2. I believe we need to know what causes autism, so we can prevent it, if it is possible to do so.

This is NOT about saying people who currently are autistic are not valuable people. That would be like saying people with cancer are useless because we agree we should do all we can to prevent cancer.

I happen to love someone with autism. That does not mean I love autism, simply because I find that concept unusual.

Autism is not a person. It is something people have (or are, depending on where you stand on the neurodiversity scale). It goes without saying that anyone who has a child with autism loves them. I reckon it is an individual decision about whether one chooses to 'love' the disorder, or the effect the disorder may have on your life.

Back to the real world - research. Let's get the gloves off and start doing something. What the hell are we waiting for (beyond money, more about that later).

I think we have a lot of leads now.

If I was queen of medical research and had Bill Gates billions, I would be handing this list onto my minions.

 - look at immune systems
 - look at environmental toxins (including vaccines and their interaction with different immune systems)
 - look at diet
 - look at food storage (esp. plastic)
 - look at food production (esp. pesticides and soil integrity)
 - look at building materials (esp. paint, flame retardants, whetever the next generation's asbestos will be)

I would test in utero (carefully).
I would test just post birth.
I would test each and every person who has an adverse reaction to a vaccination or medicine.
I would test mothers.
I would test fathers.
I would test siblings and grandparents and cousins.

I would share this research, endlessly, to anyone who wanted it. I would invent a system so everyone who wanted to could participate without eating away at its validity. I would make sure that money never ever got in the way of people finding out as much as they possibly could about themselves/their children/their peers.

I would embrace the fact that we live in a big world that is concurrently tiny. In 30 years I've gone from writing cumbersome paper letters to my family on the other side of the world to being able to chat to them face to face in real time on a thin little book cover thingo. We have the technology. We should be using it.

And if you are in my family on the other side of the world and you are going, 'What? she NEVER Skypes me?' Shoosh, I don't Skype anyone. But, the point is, I could.

3. I believe money,  apathy and fear are stopping progress in the field of autism.

The money speaks for itself (too expensive to deal with, much easier to blame parents and disarm them with doubt, problem is too big now to even contemplate dealing with any of it, it's more important to fight pretend wars and send shit into space to see if it floats...).

The apathy is endemic. A fair proportion of people will never want to engage with the reasons behind anything. This is often because they have a framework that keeps them satisfied. Maybe religious, maybe scientific, maybe cultural... something that means they feel little responsibility to anyone beyond their own. I'm kind of jealous of them to be honest, but I know I'll never be them.

The fears (likely the reasons many people fall into apathy), make no sense to me at all. Then again, fear has never seemed like a motivator for anything positive to me. I have plenty of fears, but using them to avoid what seems necessary or important is just plain stupid.

Let me address a few. We only live in a sci-fi movie if we choose to. Gattaca is not real, but it could be if we let it. Change is going to occur whether we engage with it or not. I choose to engage, so I have no reason to sit around being grumpy about people doing stuff I disagree with.

Fear of what people might do with research is like microwaved dinner. Pointless and unsatisfying, at the end of the day. Ethics is based on the right or wrong of what individuals choose to do with information. One needs information to make that choice.

4. I believe we need to wake up and accept what's going on

I feel myself being seduced with spurious logic, sometimes. Here are a few things I think we are being told to appease us.

- the diagnosis rate of autism is accelerating because of better diagnostic practices.
Scratch the surface of any autism parent and you will see varying degrees of distrust and indifference towards the medical fraternity. This doesn't come from drinking too much coffee. It comes from years of being ripped off, ignored, questioned, misinterpreted and disrespected.
If there are new improved diagnostic professionals lurking out there, they are hiding their light under a very incompetent bushell.
Also, show me the evidence to support this theory. There must be some, right? You are the scientists.

 - autism is nothing but difference that lazy parents are pathologising rather than accepting.
Come and live in my house, with my high functioning son, for a day. See how deep the disability runs in his body, his brain, his capacity to function. See how much choice is involved in his ability to be impaired or not. See the filing cabinet drawer (yes a whole drawer) full of his medical records. See the efforts we have had to take to ensure he is adequately educated and not hospitalised.
If you are still not convinced, I'll send you to five other houses where kids who are 'just different' are in major mental health crisis, attacking their siblings and are dealing with doses of medication horses would baulk at. Then they will send you on to five families they know.
It is NOT getting easier. It is getting harder. It is not getting simpler, it is getting more complex.

 - the problem is with 'society' not understanding autistic people.
This definitely is a problem. It is not the problem.
Arguing about who deserves more understanding or respect is insane to me. Everyone deserves respect. Full stop.
The problem is that we are doing something to add exponentially to the disabled community, and we don't know what it is. More to the point, we are not adapting our society to accommodate the needs of this increasing population. Even more to the point, we are hijacking ourselves with arguments about who is more right, who needs more quicker, and who is better off, while the 'society' that is supposedly not understanding us is looking on bemused.

 - autism has been hijacked by crazy hippy celebrities who just want to sell more magazines and movies.
Yup. Making up stories about your kid having seizures is a great way of getting me to look at your boobs. Inventing conspiracy theories about vaccines will absolutely make me watch your latest talk show. Purporting regimes of supplements will absolutely make me buy your album.
Seriously. WTF?
The celebrities who are sticking their heads above the autism trenches are parents, just like me, and maybe you. We share the experience of being scared witless by the fear of losing our children (literally or figuratively). We share the panic borne of realising there is no reliable information out there to support our children literally or figuratlvely.
They have access to the media, and so they use it. I, for one, thank them, every single day.
Do they make mistakes? Sure. Do they change their minds? Yup. Do we all do both of those things when wrangling with a some new and ever-morphing challenge? Of course we do. The only difference is no-one sees us doing it.

 - there is no evidence to support... (insert anything you like).
See points 1 and 2.

We are allowing ourselves to be hoodwinked into passivity. I reckon, if we are going to be passive, best we be aware of choosing to be so.

For me... It is not OK to me to let things go on like they are. It is not OK to me to continue to ignore the increasing diagnosis rate. It is not OK to sit by and do nothing.

Many may disagree.


I look forward to many more robust discussions on Facebook.

More importantly, I look forward to change. Real, appreciable change. I hope it comes in time to assist Billy, but that's not the only reason why I think it's necessary.

Here's why I think it's necessary.

Go into your boxes (or folders) of photos and find one of yourself, or someone you love pregnant. Look into the eyes of the woman in that photograph and see the joy. Go find another photo, maybe one of those ones we all have of the moments soon after our child's birth. Take a moment to really feel the excitement and the hope buzzing between the people in the photo. Find another picture - a first smile, a first step, a first bowl of pumpkin or something...

Remember the joy you felt when you experienced those things with your child. Take a look at your own photos if you've glossed it over.

Then, consciously suck the happiness out of your memories. Replace the happiness with something else. First shock, then fear, then some emergent hope. You will always feel love, but the rest of the emotions in those photos will always be compromised. Not gone, just changed. Replaced with something else, something you can't ever really get a handle on because you don't know what it is. Something no-one except a few angry celebrities seem to care about.

I don't want more people to have to go through what we have been through. I don't want more and more children to develop autism and deal with it's challenges if there's a chance that it might not be necessary, or that we could reduce the severity of it, if it does happen.

Even a small chance is worth fighting for.

To me, at least.


Lisa said...

Holy fuck, BatVal.

What a piece of writing.

As for content, I'll need to read another 2-3 times...
Tomorrow (it's past wine-o-clock, ya know).

imawestie said...

I see that "the media" identifies anyone with "an Autism Spectrum Disorder" as having "Autism", unless they have Aspergers (which means they are "articulate but quirky").

Whereas the mental health professionals who are actually guided by the DSM-IV (soon to be DSM-V) identify Autism as being only one small point on a spectrum of disorders.

As to the origins of the Autism spectrum in an individual, I am pretty sure there are as many underlying triggers as there are people on the Autism spectrum.

Michelle said...

In the last couple of days, I have given some thought as to our discussions, but by reading this, I think I understand something very important.

I think those who have children with medical issues, causing autism-like symptoms, and those who have Kanner's autism or chromosomal and neurological differences, tend to misunderstand eachother. So, while reading your views, I understand where your coming from. But I want to correct a common misbelief many parents with kids with medical issues believe: that mothers such as myself stick our heads in the sand and are happy being apathetic. This could not be more wrong.

I am an activist. I am a researcher. I teach others about autism. But just not the way you do, because we are talking about two different things that unfortunately have the same name.

I am an activist of keeping those with medical issues from those with genetic and neurological issues. We do such an injustice to both groups. Kids with medical issues do not get funding for programming, helping with a proper regimen, and teaching the parents about what this disorder - or disease as some put it - is about and how they can carry on treatments at home.

Meanwhile, people like me struggle daily to be able to use the scant resources available to it's full potential - but cannot because behavioural programs are given to children who have medical issues. I have yet to have found any data that shows extensive improvement for severely affected children through ABA programming. Children with Kanner's autism have shown marked improvements as long as they do not have a dual diagnosis to get in the way.

I've spent years researching autism, genetics, and neurology in three ways: 1)I studied it for my psych degree, 2) I studied it since the day I got my job as an ABA therapist, and 3) the moment Dylan was officially diagnosed. And I am researching still, because my youngest also has autism.

I fought for my second son to have services from 3 months on. At this point in time, he's had 3 hearing tests, an ABR, 3-6 month eye exams, 2 EEGs, speech since he was24 months (he is still completely non-verbal), Infant monitoring programs, OT, PT, genetics, etc. We even have a social worker who helps me organize appointments and get futher programming.

I do daily food records, implement food programs, sensory records,deal with not only Dylan's autism needs at school, but with those of Lucas too. The only thing I am NOT doing is starting a medication regimen to help Dylan with his anxiety and behaviour issues. Instead, we raised $30,000 to get him a service dog.

I can't tell you how many hours I, and so many parents like me, do our research. Many have done just exactly what I have done, and is still doing, and will ALWAYS do - just like you.

But differences in opinions does not equate putting heads in the sand or being apathetic. Thanks for sharing your point of view. I hope you give consideration to mine as well. :)