Thursday, August 30, 2012

In the name of autism...

In the wake of the publication of an article about autism (with astonishingly beautiful pictures of Billy included) in Australia this week, it has been a real pleasure to see a broad discussion about issues related to the condition bloom. It has also been amazing to hear people's stories about themselves and their own children.

What has been slightly unsettling is to see how comfortable people are with falling into a polarised position, in relation to autism.

I have always felt uncomfortable with polarities, most especially because their yes/no nature denies the fact that new knowledge might exist beyond their limits.

It seems incredibly unproductive to present your position as the 'right' one, and the opposite position as the 'wrong' one, without acknowledging the subtleties of each of those positions (or any of the others that could be involved).

But maybe I'm missing something.

The autism related positions that shock me a little, with their simplicity, go like this.

I am an adult Aspie (or my child is an older Aspie) and I am fine. Therefore, people should stop worrying/pathologising and start accepting that difference is perfectly OK.

Autism is caused by... (insert opinion) and people who think otherwise are wrong and stupid.

Autism is not a disease (I know, because I am autistic or my child is) and people should stop saying it is because it is offensive to me as an autistic person.

And the one that really really concerns me is,

You should just enjoy your son.

I'm sorry. Did I hear that wrong?

I really appreciate people's positive energy, I really do. I am in awe of people's courage in making contact, and I am not trying to make anyone feel bad.

... but I'm wondering how it could possibly be that people who care about understanding where autism comes from and about reducing the incidence in future generations might not enjoy their autistic child. Or am I jumping to the same type of conclusions I am struggling to accept in other people...?

Let me tease this out for a second.

I get that people don't know us, unless of course you do (in which case, hi! how's it going?) but... is it a healthy step to take, people who don't know us, to jump from 'she wants autism numbers to decline' to 'she might not appreciate her own child enough'?

On similar thinking grounds, why do we need to leap from 'it is devastating to be told your child has a lifelong disability' to 'parents of autistic kids think autistic adults are not valuable'.

How in heaven's name could a parent who is in the early stages of understanding, never mind acceptance of a condition that -

a) we have no known cause for
b) we have no agreement on management of
c) we have increasing numbers of, and can't (won't) agree on why

- be thinking that adults who have the condition are somehow downgradable in anyone's estimation?

And again, why are we being encouraged, by people who say they have no medical challenges to deny the medical challenges that are apparent in so very many of our children.

Why is it all or nothing? Why is it 'my way or the highway'? Why is it not... we're all in this together?

Last time I looked, no-one questions the level of enjoyment a parent of a diabetic child gets out of their child. I'm not sure if adult diabetics get on diabetic forums and tell parents of newly diagnosed parents how to feel about their children.

I'm assuming this happens because the level of discourse about an established condition like diabetes is slightly more sophisticated. We know a little more about what causes it, we know some more about how to manage it.  I'm assuming, because I'm not in the diabetes community, but I can see it's easier to talk about than autism is... I wonder why that is?

I hear the chorus of 'autism is not a disease' as I type, and in response I say, 'how do you know?'

I hear people say, 'I'm not sick, I am just different' and in response I say, 'That's brilliant news but my child is often very sick, and so are many of his autistic peers, more and more each day.'

I hear people say, 'you disrespect me with your talk of disease' and in response I say, 'You disrespect my child by denying his reality.'

And that's the point where I feel like I'm back in school having arguments with nuns about whether God exists or not. The polarities are not only pointlessly impossible to prove, they are waaaaaay too far apart.

Why are we not all right? We are all here, acknowledging a connection to the same condition, right?

We all accept autism is a spectrum condition. It is very young, medically. It is changing in front of our eyes. People outside of the condition, or people who have had it for a long time may not be aware of the changes, but they are there.

Of the 100 or so families I would call peers on this journey, well over a third of the autistic kids have serious medical challenges. Not simple challenges. Serious, increasingly life threatening ones - metabolic conditions, mitochondrial disorders, serious mental illness, auto-immune conditions. Every week comes with a new, or worsening diagnosis among these kids. If this is just co-incidence or bad luck, we all need to move our houses off the indigenous burial grounds we must have defaced and buy a couple of black cats each.

None of us were told to expect this. None of us knew it was coming. All of us are, and should be (in my mind) alarmed.

It would take a very, very closed mind to experience what we have experienced in relation to the health of our child and not assume it was linked to the fact that he is also neurologically different. He is one person, one integrated body system, with a recurring set of blatantly medical red flags that bridge his 'difference' and his time in the ER.

Us accepting that has been hard, but that is nothing compared to what Billy has to deal with. Us accepting that does not, and should not lessen the legitimacy of any other life journey on the autism spectrum - similar or different to Billy's.

Does acknowledging (because calling an ambulance repeatedly for your child kind of makes you acknowledge stuff) the seriousness of our kids health conditions make us devalue them as people (autistic or not)? Of course it doesn't. And to be honest, it's pretty offensive to be told it does, or even that it might.

My personal take on our lives is this.

Billy is autistic. Billy has seizures. Billy has an auto-immune condition. Billy has chronic GI conditions. Billy has blue eyes, a photographic memory and gives the best hugs on planet Earth.

None of these things make him an better or any worse than any person on the planet. They, and many other things, make him Billy.

As his parents, it is our job to help him have the best life he can possibly have. This job is only different to other parents' journeys (ie. with children without the conditions he has) in the fact that we spend way more time in the hospital than some people, way less than others.

Beyond that, we love him and challenge him and care for his needs and, most importantly, help him find his path in life. The biggest part of that job is helping him have a very clear sense of who is is - inside and out. He knows he is autistic, he knows he has seizures, he knows he gives good hugs. The list could go on.

Does he think any of those things are bad? No. Not for a second. Are they always fun? No. No, they are not.

Acknowledging the challenges in anything, let alone something like autism, is a healthy process, surely? Giving an autistic child the opportunity to understand that his challenges are not because he is a loser, but because he has a legitimate condition that comes with a range of issues (more than just 'difference') is a responsible path.


I could honestly give two craps whether someone thinks their autism is a gift from God, or a curse from the vaccine industry or an unfortunate by product of a visit from aliens during pregnancy.

The reality is, it is here. None of it should be disrespected. None of it should be judged. None of it should be discounted as something as simple as 'difference'.

How an individual carries themselves through life, in addition to their inborn capacities, is influenced by how they were parented. We take that job very, very seriously.

If I thought I was bringing my son up to believe that there is one belief system, and all others were wrong, I would feel like I was failing dismally.

How we have got to the point where we think it's OK to apply this black and white thinking to a condition like autism, is a mystery to me. The only possible reason I can think of is because we do not know enough about it yet, so people are all clinging to their various lifeboats determined to believe theirs will make it to shore.

Polarities are not only basic level debate strategies, they deny the depth of information that exists (and will exist whether we like it or not) in that vast region that spans the line between black and white.

I'd quite like my son to be healthy. I'd quite like to avoid other children having to have his challenges or the challenges I see in his peers. The difference involved in those challenges is the least of anyone's concerns. The danger involved is the greatest.

So, if a polarity in relation to autism is necessary, here's one.

Difference on the one side. Danger on the other. The stakes are not just way higher, I suspect they are very different to what they used to be.

As much as I don't care for such simplistic arguments, and don't see the sense in trying to unravel a person (least of all my son), I want him to not be in danger. I could care less how different he is.

If doing that makes people think I have somehow compromised my ability to enjoy my child, then that makes me really quite sad. The reality couldn't be further from the truth. Sadly, this very line of thought takes us back to a very unproductive way of viewing and managing disability or difference, in my mind at least.

The discussions we need to be having are so much more complex. I only wish we truly knew how to have them without alienating each other with polarities.

If there was a 'right' position in this game, surely we would have leapt on it.

Then, the world would be happily accepting all the 'difference' and we (and so many others) wouldn't be headed to the hospital again and again and again.

All in the name of autism.


Michele said...

waaaaaaaaaaaay off topic I know and a somewhat trivial response to this big post (which I have lots of thoughts about btw but none I can string into an articulate meaningful response just now apart from "yeah what she said!")

so yes a trivial question in place of a meaningful response to your post .... I would love to know more about that gorgeous dog photographed along with your gorgeous boy. Is it yours and what breed?

Michelle said...

WELL SAID she shouts!!
Autism is an extroadinarilly complex and messy disorder. To know one child with autism is NOT to know all children with autism; they are all so different from each other.Thats what makes it so incredibly difficult to try to pinpoint what actually causes it. So much more research needs to be done!!
Two of my three kids are on the spectrum, my daughter now 22 and my son, 17, so I have been dealing with it for a long time now. It's been an incredibly long hard road, with plenty of rewards in amongst the tears, my early years, when I felt like I was in a black hole I couldn't climb out of, I had trouble seeing the positives. That didn't mean I valued my kids any less, but I did need to go through a grieving process as I came to accept our situation. I was absolutely convinced I gave my kids autism (crazy I know!) and was full of giult and anger for some time!
My kids have had different isues to your little boy. They have been relatively lucky with their physical health, but emotionally, mentally, not so much. They have both suffered from anxiety and depression, which is pretty horrible too. But thankfully not life threatening! I really feel for you and your hospital visits. I sincerely hope they lessen with time.
It takes a lot of sheer hard work and lots of love with this autiem gig. We need to support each other, not squabble about our differences. In the end it doesnt matter really. Doing our absolute best is all that counts.
Congrats on your article in the Weekly. Billy is gorgeous!!
Keep fighting the good fight

Anonymous said...

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Janine said...

My son is the midddle child of 5 and we have known he was different from a very early age, saying that he is highly functional he just thinks differently and reacts different. I get heartbroken when people see him for a short period and think there is nothing wrong with him, I feel like they think we are making it all up or think he is just badly behaved when he can't control his emotion. The thing is they don't live it every day! Nice to see support here, we are just in the process of trying to get Timothy properly diagnosed.