Friday, July 6, 2012

If I had a do-over...

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 go away.’
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 aim.
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 the diagnosis.
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 wrong.
Man, how I hope I am wrong.

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Valerie's increasingly random ramblings can be found at Jump on the Rollercoaster


  1. I like your honesty. I think that as SN parents we tend to want to hide from the REAL truth. We only say these things in our head and then beat ourselves up because we feel alone in this. I applaud you.

  2. My duaghter also has some serious chronic medical issues and has a rare genetic syndrome... I think I too lived in the land of makebelieve where I thought it would all just go away as she got older! When she was little it was mostly medical issues, life threatening issues which led the Docs to warn us that she would suffer brain damage to some degree that would not be evident until school age... I couldn't grasp it until she started school... each and every year, very little progress is made. I've lived my days with the belief that one day she would catch up! She has not and probably will never... it is hard to realize that cold hard truth and I THANK you for voicing it.

    I would love to invite you to stop by my blogs...
    and my newest
    I would love it if you would think of sharing some of your thoughts on the later blog which is dedicated to making the lives of our SN kids better in some way!

    Happilly following you,

  3. No point in shooting the messenger!