Tuesday, August 28, 2012

The point of a point of view...

It's been an interesting few days.

A Canadian documentary about autism went to air in Australia, and the wave of reaction was something to behold. First, autism parents and families went 'Wow, finally, someone talking about one of the key issues we live with', with a tiny bit of 'Oh great, another thing to feel guilty about' and a few 'Why are people thinking we don't know this already' statements.

Then, the service providers and the non-aligned researchers started in, warning people (who clearly have no ability to interpret the information for themselves) to treat the documentary's message with caution (and I am being kind about their statements).

On the most basic level, I felt a curious mixture of anger and embarrassment. Anger at the pathetic patch-protecting response of the autism industry, and embarrassment that Australia is so far behind international thought on the medical nature of autism.

But that's my point of view, from where I am at the moment in my ride through autism land. It's not where I was when we started, and it's not where I was this time last year. It's not where I will be in five years time.

I think my journey is fairly typical, especially for someone with a child with a range of challenges.

Moreover, what I think is just that... what I think. I don't think it's gospel. I don't think it's irrefutable. I do think it's an honest product of what we have been through as a family.

In response to the interesting-ness of the last couple of days, I feel moved again to think about why I put words on paper about autism. I'm just another mother of a child with the condition. I'm no expert, in anything. So, what the hell am I doing here?

Let's see... I do not write this blog to:
 - present some ideal of what autism parents should do with their time.
 - harange/bully/insult anyone who does things differently to the way I do.
 - promote one intervention/service/initiative over another.
 - inflate my own sense of importance.
 - make money of any kind.

I do this for one reason (apart from to sort my thoughts into neat rows of word-ducks).

In case, one person, one day, in a moment of need might come across what I've written and go... Oh wow, I relate to that. 

It sounds insane, because autism is everywhere, right? It's not like there's a shortage of information out there. But, here's the thing.

Each and every autism parent has to navigate their own way through what really is a minefield of information. One would think, given the depth of the minefield, that it might be like autism Christmas... lots of choice, lots of positivity, lots of surprises.

Well, it's not.

It's more like autism Mad Men. On crack.

Almost every thing you read about autism has an agenda behind it. The agendas vary and they sneak up on you, especially if you are a little tired and emotional.

When you start in this game, it's really, really hard to decode those agendas.
 (well, it was for me, and I'll happily admit I'm not all that quick witted. If you've got this game wired already, just sing a happy song for a few minutes then cut to the bottom of the page. I'll try to throw in a joke for you, by way of a reward).

Here are a few I have found.

Someone is selling you something. 
This can be good and bad.

Some things, you genuinely need to buy, so it's good to have the information (therapist services, books, some food and supplement related products).
Some things you think you'd like to try, but it seems too good to be true or it's gut wrenchingly expensive and so it makes you nervous (computer based products, apps, other supplements and interventions).
Some things are so outrageous your alarms rise straight away but you can't help looking anyway (programs that teach you to 'love your child', snake oil of various kinds).

There is a giant, and growing, pile of cash swirling around autism and it is a giant, and growing shock that people will take advantage of you in pursuit of that cash. It's business, to them, and I'm sure there are very few genuinely evil people out there, but, seriously... buyer beware.

If re-mortgaging your house is required so you can engage in a long term behavioural intervention, and you don't mind re-mortgaging your house... go for it. But, know that NOTHING (repeat NOTHING) comes with a guarantee of success, so you may end up with a giant debt and not what the brochure tells you will happen. If you are happy to take that gamble, then take that gamble.

GFCF is expensive, in time and money. So is going organic. So are supplements. So are shoes, and restaurants and overseas holidays. Do not listen to the sales pitch. Well, do listen, then go and do more research. Then ask some people... Then, read some more, ask your doctor. They'll all say different things and you will feel like vomiting, but you will learn useful stuff. Even so, the outcome is unpredictable.

Therapists, psychologists, consultants will all charge you significant prices for their services. Are these prices justified. Sure, they are, if the therapist is skilled and experienced (which is really hard to work out because, lets face it, they all say they are, and they are all more skilled than we are - unless we are therapists ourselves, so... ). It becomes less and less easy to find the money, and more and more necessary to find it. Not the best position to be in, when one is under pressure to allocate the dwindling cashola.

It's tough, but you have to make the call that feels right to you, and it's bloody hard to know what feels right. More often than not, you listen to the spin, try the thing, drop way more money than you have and then kick yourself and move on. Once in a while, you hit paydirt. Those are good times.

Someone believes something, passionately.
This one takes a super human level of reading between the lines skills, and regularly explodes unsuspecting brains.

Autism is political. Autism is emotional. Autism is divisive. You have to get really good at working out where someone is coming from and reading their passion through that, very legitimate, lens. You need to know about the lens because you will grow one too (or a few if you are lucky) and it will influence who and what you believe (or not) and how quickly you will believe it (or not).

What the hell am I talking about?

Neurodiversity is the easiest to decode, to me. Neurodiversity is term coined by advocates who are autistic to advocate for their right to be autistic. It is a deep, worthy, complex set of beliefs that I will do no justice in one sentence. It has become an advocacy based political movement in the autism community and at various times, prominent members of the neurodiversity movement will make statements on various things relevant to the autism community.

Sometimes, as a parent of an autistic child, who is not autistic yourself, you will be deeply confronted and challenged by what neurodiversity advocates have to say. Other times, you will find yourself applauding their messages and finding great hope in them. Almost always, they will make you question your choices. Sometimes that challenge will disappear quickly, other times you will go out and sell a whole pile of stuff because you realise it's completely wrong for your child.

Similarly, advocates of vaccine safety, biomedical treatment, ABA, mainstreaming, recovery/cure... any number of things, will throw intellectual grenades into your journey through the information. It is really hard to not get scared, angry, threatened, inspired, teary, hopeful and a bunch of other Disney dwarves.

I suggest you become all of those characters, and while you do, try to work out why. Try to decode your reactions, and use that to get yourself a useful framework for action.

Am I angry because it's genuinely offensive, or am I angry because I am feeling guilty for not considering this before? Am I teary because I am exhausted, or am I teary because I've missed an opportunity? The answers will surprise you, I promise. I suggest a including a drink or a chocolate or a very understanding friend in this decoding process, as it's not fun by its very nature. You may as well lighten the load a little.

Then, stand up, put your grown up underpants on and get on with it.

Someone is feeling a strong emotion of some kind.
This is about inertia.

We all do this in our non-autism lives. Well, I do.

Gyms (yoga/pilates classes/bootcamps) are stupid, is my favourite one. I say it all the time, and I have said similar things throughout my life. What I'm saying is, 'I should be exercising in a way that works for me, and I'm not.' Therefore, all the choices I have rejected are stupid.

In reality, they are not stupid. They are perfectly legit choices for other people. I'm not keen right now (though I am getting to love the treadmill running, but that's for another post), but I know I have to do something, so I'll say (or feel, if it's a calm day) my non-preferred choices are stupid. I might even go to lengths to disprove the validity of pilates in conversations, with involved stories about pilates disasters and unfairly acquired pilates injuries. No offense, pilates, I'm just using you to make a point.

I do not know one autism parent who feels like they are doing enough for their child. Not one. This might reflect the calibre of people I know, but I suspect it's more than that. You can never do enough. You can never stay ahead of the game. There is always something else you should be doing, thinking about, planning for, freaking out about... so don't allow that already fraught journey be hoodwinked by other people's emotional reactions to whatever you are considering.

So, my advice would be accept the information, but first process other peoples' emotions in whatever way works for you. They should not be a mitigating factor in your decision making. Do not use your reaction of fear or overwhelmed-ness as a reason to not act. Do not use your reaction of giggly hopefulness as a reason to act.

Take a sanity second. Take a sanity month. Stay engaged, but take a sanity year.

And here's where I want to say something I wish someone had said to me. It is my point of view. It has become the reason I keep on writing.

Hope is a wonderful thing. Progress rocks the kazbah. But if I've experienced and observed one thing on this journey so far, it is this.

It is not getting easier as time goes on. It is getting different. And it's not always an easier different.

I definitely know some families who have managed to minimise the challenge significantly, but they are in the vast, vast, vast minority.

Do everything you can for your child, of course. That's what parents do. But...

Do something (anything, whatever you can do) to prepare yourself for the fact that it might not get easier. Do something so that that reality doesn't stab you in the heart/gut/brain every time you face it.

I'm not saying anything even remotely related to not having hope, or that autism is a pox on anyone's house, or that autistic people are hopeless burdens on all of us.

I am saying, the narrative you are likely to be presented early on in this journey is that you will be relieved of the stress as soon as is humanly possible. The people who are presenting you with the information you seek have likely given you this message. Maybe it will come at EI, at therapy, maybe at school, or when your child becomes an adult. As much as I want this to be true for me, and much much more for my son, it is not what is unfolding. It is not what I am observing around me.

And...  it is what it is. It isn't a choice, and it is our lives. It isn't miserable by any stretch of the imagination, but it's not what the agenda bearing statement makers promised. They were making statements based on their agendas, not on us.

This is NOT a competition about who is more right. It is a significant, important, commitment to happiness. It is life.

You are the only you. Your child is the your child.

I have learned (been taught/been forced to accept) that it is really, really important to look after your own emotional (and physical) journey. Your child needs you to have your ducks in a row. They will need you to have your ducks in a row for a long time, a much longer time than you expected. Even if you choose to replace those ducks with geese, or oranges or bottles of beer.

OK, maybe not the beer. Not every day.

1 comment:

Tamakazee said...

Hi Valerie,

I would like to know your reaction to and thoughts about the documentary about autism that aired on Four Corners.

Kind Regards,