When I started this journey in autism world, I thought
(bizarrely) that it was going to be a short trip.
Despite the fact that all the official literature said
autism was a lifelong disability, the people we talked to used language that
made us think it wasn’t going to be, for us. The paediatrician said Early
Intervention was ‘the key’. The Early Intervention people said we should do as
much as we could if we wanted a ‘positive outcome’. The other parents said
Billy was ‘not so bad’.
What’s a gal to think in the face of such statements?
Nobody, not one person, said, ‘Oh sweetie, there’s every
chance he’ll be autistic when he’s 50…’
So, if you are here, looking around for some affirmation (as
I clearly was at the beginning of our time as special needs parents) that the
autism will magically disappear one day, I wish you luck.
I am going to be the one to say, ‘It’s probably not going to
Sorry, but that’s what I have observed. It’s possible, but
it’s currently not the most likely outcome. Especially if you are not deeply involved in making it happen.
If you want it to go away, you need to sign up to a complete
change in lifestyle, and I’m not talking about moving to the beach (although
that might help). It’s not going to go away just because you want it to, and
it’s not going to away because your child ‘grows out of it’.
Change may come with insanely hard work, unspeakable amounts
of time and a massive amount of change to your life. You may work your ring
off, and nothing may change. Or everything might change. There are no
guarantees, but definitely the vast proportion of people who have seen the
results they were hoping for, strapped on the body armour for the long haul.
It’s probably worth mentioning here that I am not saying
being autistic is bad, or autistic people are bad, or autism is bad. I need to
say this out loud.
Here’s the framework, I’m working under…
As parents, all we want is whatever we define as ‘the best’
for our children. Good health, best possible chance to live the best possible
life - that kind of thing. You want the minimum possible struggle, the maximum
possible happiness and possibility… normal old parenting aims. I can’t imagine
why, with a solid dose of acceptance and rationality, autism should change that
If what my family is living, and what we have observed is
anything to go by, autism – even the high functioning kind, is rarely a skippy
walk in a quirky park.
Most surprising to me is the fact that it can morph into the
truly scary, medically. No-one ever told me that could happen. And it has
happened to at least a quarter of the kids I know. ‘It’ being seizures and
other serious neurological conditions, mitochondrial and metabolic disorders,
chronic mental illness, chronic gastrointestinal issues, major disabling
regression, major motor and movement issues.
Billy’s medical life is complex and chronic, which makes me
ever more screechy in my pleas to anyone who will listen.
We have a medical fraternity that questions our motivations,
ignores our concerns, or judges our desperation. We take this from them,
despite their almost total lack of answers. The statement, ‘It’s just autism,
Mum’ is my least favourite.
I often find myself facing a doctor and thinking that inside
their head they are thinking, ‘For Christ’s sake, the child is disabled anyway.
What the hell does she want?’
I don’t know if they really do think that, but I can’t
imagine any other reason why someone would give up trying to understand the
reasons behind a child’s illness or worrying behaviour changes.
It’s a line that is easily misinterpreted, I guess.
I think the autism, in Billy, is very unlikely to disappear.
Having said that, it’s the least of Billy’s concerns. I think the fact that he
is autistic, shouldn’t be a reason to not unravel his GI issues, or understand
his atypical seizures or his hearing issues.
More than that, I have grown to believe that the autism, in
and of itself, is worth unravelling. What is it that makes someone autistic, and why are we all sitting around accepting a drastically accelerating diagnostic rate? At
the moment autism is judged from the outside, by observing behaviours. It is insane
to me that there wouldn’t be some shared biology in all the people who share
There have to be some answers, and we are definitely not
coming across medical professionals in Australia who seem like they are even
posing the questions. If the doctors aren’t going to lead the way in the search
for knowledge, then I, for one, am happy to stick our hands in the air.
I think it’s the only choice. It feels to me like we are on
the crest of a wave. Which means we have to either crash on the beach and
flounder about like stranded fish, or stylishly surf to a better place.
If I could have a do-over of our autism journey, informed by
what we have learned along the way, I would throw us into biomed and I would
place a much higher price on general good health and nutrition. I would spend
less time being haunted by the lure of hardcore behavioural therapy, and more
time listening to my child.
I would not allow myself to think that there was just one
way to deal with autism, and I would document everything I heard and saw and
thought about autism.
I would do this because I think, we – the parents, are it,
really. I think the gathering of information and the acquisition of knowledge
is up to us. I do not see how the medical fraternity can lead the search for
knowledge when they are so clearly bound and compromised by their own needs.
So, even though you probably hate me right now for raising
the ‘it won’t go away’ thing, you will learn to love me.
You will either love me because I spoke the truth and saved
you a bunch of drama, or you will want to hunt me down and tell me I was dead
Man, how I hope I am wrong.
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Valerie's increasingly random ramblings can be found at Jump on the Rollercoaster.