Friday, May 25, 2012

I'll save you some time...

Given the acceleration in the diagnosis rate, I'm assuming there are little bunches of new autism parents popping up around the world every minute or so.

In case any of them have internet access, and might happen to happen across this site, I'm going to cut to the chase on a few common autism related internet traps.

1. Research studies about autism
It may surprise you (it seems to surprise a bunch of experienced players) that every single autism study will not relate directly to your experience of autism.

Don't be shocked. We're all different. We may not know how different, or how to differentiate our difference, but... do not feel confused if you did not have a fever or a few too many pizzas while you were pregnant. Do not feel left out if your child didn't have a billion antibiotics before 12 months. Lots of people may have.

They are studies. Single studies, with their own cohort specifically chosen to validate a hypothesis identified before the study began. A study is only very rarely an unbiased search for random meaning. They are created and funded, for the most part, specifically to prove a point. I'm not saying they are lying, but I am saying they have a specific focus. Not universal meaning, specific finding. Valuable, in and of itself, even if it doesn't relate to you directly. All a part of the big melting pot of autism information, reflective of who and what inspired whichever study you may be looking at with a  squinty, questioning eye.

The fact that a study doesn't reflect your life/child/relationship/health does not invalidate that study. It simply means it relates to someone or something else. Not a conspiracy, unless it's on a fast track to making quantum change in a nanosecond. Which would be... unprecedented and more like a Ridley Scott movie than actual life.

Chill. Or go to university and do your own study. Stop by a big company for funding on your way. You'll have a better chance with their backing.

2. Media articles about autism (especially those in major newspapers/news websites/TV networks websites)
They are not information. They are news. News is not information. News is pictures and words designed to get people to make their eyes stay still long enough to look at the advertising that surrounds them.

If a major news network covers an autism story, and you have a child with autism and are alive, you already know the information they are going to cover. If a news organisation with a specific financial, religious or political affiliation covers an autism story, they are not covering an autism story, they are speaking for their affiliation.

Please, for the love of all that is sparkly, accept that the information that is useful to you will not come through the media. Not unless there's some revolutionary surprise finding that cures everyone with autism if they want to be cured, magic bullet style. And, the likelihood of that happening is so limited, we may as well all wait to see Jenny McCarthy's boobs in the media again.

Put your own biases aside, and go to the source. Read the media reports, see who did the study, and go to their website. Read the study, work out (if it's is disclosed) who funded the study and understand what bias that may or may not have introduced. Try not to judge, just read. Learn from the data as much as the findings.

My own personal tactic is to read everything I can get my hands on. Is it exhausting? yes. Is it frustrating? To the point that some days I throw things around the house. Why do I do it? Because it's not about me, and it's not about Billy, it's about all of us.

3. The cult mentality
It probably won't be long before you start to feel as though you are expected to join one camp or another, in virtual autism world.

Are you pro or anti vaccination? Within that, are you a vaccine safety advocate or one who believes the only safe vaccine is one that isn't made at all? Do you believe autism is a gift from the nerd gods, or a curse from Satan? Do you believe therapy is torture or a vital part of life with an autistic child? Mainstream or not? GF?CF? No Fs at all?

If you believe one thing, can you change your mind? If you are supportive of one camp, can you also be supportive of another?

I have no advice, to be honest. Do what you think is right. Accept you will change your mind as your child grows and improves or not. Toughen up, because it's rugged going, and there's nothing wrong with that. It's parenting on metaphorical steroids. Family action writ large.

My experience, and the experience of most autism parents I know, is that things get different. Sometimes better, sometimes worse. It's easier in some ways, and much, much harder in others. There are fewer kids with less needs that there are kids with more needs, if that helps at all.

So tying yourself to a tribe, may give you safety in numbers (and no-one can deny that feels safer). If that's what you need, go for it. If that's not the kind of person you are, then strap yourself in. It's going to be a bumpy ride.

4. The 'possibility' message
Much of what you are offered as an autism parent is about the long term. The tough game is knowing what will make a better future and what will make you resent the bejesus out of the person that told you it 'would work'.

This goes for therapy, diets, supplements, ancillary products, technology etc all of which will be hawked at you ad nauseum (and I often mean 'ad' nauseum... on the edges of your FB page/blogs/gossip pages... oh hang on, that's my internet usage).

Again, I got nothing.

Well, nothing but my experience and the experience I have observed thus far (which is clearly NOT universal truth).

Health is good. Listen to the people who talk about health.
Best possible diet, good ASD friendly medical care, supplementation under supervision (again by someone who gets autism), acknowledgement that autism is medical in nature and that 'lots of autistic kids have/do this' is NOT a reason not to treat it.

Calm is good. Spend a bit of time on the stuff that promotes calm.
Very few people learn anything positive by being stressed or while being stressed. Push whatever boundaries you are comfortable with, but get a good sense of your child's thresholds too.

Change is possible. But question the cost. All the costs. Remember people are selling you stuff, not nominating themselves for sainthood. They are running a business, or promoting a campaign. It's not evil, it's business. Be shrewd.

I'm not saying be cynical, not at all. I am saying make decisions based on your child, not on what the proffered service/product/program promises. Autism is a boom area. Make sure that boom isn't going to shatter your child's health/well being/financial future, or your brain.


We haven't been doing this for all that long (even though it seems like forever).

Billy will be nine at the end of this year, so autism has been officially in our lives for six and a bit years. There are people who have been doing it much longer, who know waaaaay more than we ever will. And things change each and every day.

Just as much as we sail from the fun bits to the horror stretches on this rollercoaster ride, I am watching families crash, burn and re-form Terminator style all around us.

What's going to happen to you and your child? No-one knows. It may go better than you ever dreamed. It may not.

But, I can say you are likely to feel a lot better about whatever happens if you are not spending a lot of your time arguing with a computer/TV/iPad screen. As hard as it is, cut your technology some slack. Treat it as you would a naughty puppy - with love and fair limits.

And do not try to rub its nose it it's own crap. It won't notice, and you'll just get your hands all mucky.

Finally, remember that the same technology is there to entertain you. Take those minimal moments to read some nonsense, listen to a few tunes, watch a few episodes of 30 Rock. Whatever floats your boat.

Look after it, and yourself. There will be enough hair raising moments when you need it to work out how to save more underpants, how to make ingredient free snacks, or where bone up on relevant legislation to advocate for your child.

Sorry, that's my life again.

2 comments:

Michele said...

spot on. something to pass on to all the newbies. Love it

Dana Meijler said...

Fantastic! A great how-to guide for Autism but also relevant to just about anything else. Sharing it on Facebook!