Not wanting to deflate the hope of newly diagnosed families that their child will not be autistic one day, but wanting to protect them from the future awful feeling that they’ve been tricked into believing same.
We’ve all been here, right? You don’t want to spook the horses, but the road ahead for a family with a ‘quirky’ toddler is not an easy one. Do you pat them on the back and make comforting noises (like the doctors do), or do you blow their freaking minds and potentially break their hearts by telling them what you have learned?
I used to be a patter. Now, not so much. I struggle generally with heart breaking, but I’ve been trying for a while to come up with a way to do it anyway. Preferably with some intellect and guidance attached.
I know when I was in their (newly diagnosed) shoes a decade ago, the most powerful weapon I thought I had was hope. Really, at that time, my hope was actually denial wearing nicer clothes. Many many many people (real and virtual) gave me lots more pretty outfits to dress up my denial while we journeyed to a place where my kid was CEO of Apple and I was a hero for accepting him.
I now think my weapon of choice should have been thinking, not feeling. This isn’t about how we feel about our kids, that’s our business. It isn’t about how we feel about autism, which is also quite a personal matter.
It should be about how we think. What we think our children deserve. What we think happened to them. What we think needs to be done to prevent more damage.
We could start by casting a beady eye over how we, as parents, have been led to think about autism (or perhaps, how we have not been led to think at all).
Autism is a word used by doctors to describe behaviour and ability. It is diagnosed by doctors with training in psychology, ratified by para-professionals with training in the modification of behavior. At no point in the process of identification, diagnosis or mainstream management of autism is the physical health of the child, as it relates to this new diagnosis, examined. Causation is not discussed (unless your kind of discussion involves ‘we don’t know’ or ‘it wasn’t that‘).
Despite the fact that we all get rightly huffy about ludicrous theories like ‘refrigerator mothers made these kids autistic’ we let the definition of autism in the very hands that held that theory gently for so long.
Despite the fact that we have no idea what’s causing the behaviours and abilities that define the condition our child has been diagnosed with, we are encouraged to put the child in the hands of people who actually do not care about that very fact.
We tell people we want them to fix it, without ever asking a medical doctor what ‘it’ is. More precisely, we are told to accept that it is OK that medical doctors don’t know what it is, and we should leave it in the hands of those who will aim to ‘change’ it.
What the hell are we doing?
Well, some of us strap on the sheepskin and carry on to Early Intervention. Some of us scratch our heads and proceed with caution. The rest of us, an increasing pack of us, start researching. We do it the way we are all taught to research – go broad and understand as much as you can, make a specific plan, enact and continuously evaluate the plan, fall asleep at 3am, get up and do it all again.
With a few variations, this is what we learn.
There are many predicted roads to the future, each driven by their own philosophy and their own version of science.
The highly evaluated roads (the ones that reinforce the status quo, and aim to manage the outward expressions of ‘autism’ – speech and language deficits, behaviour challenges, restricted interests) do not question the causes of those expressions. These are the therapies that every family is told will change their child’s trajectory – speech, OT, PT, behavioural therapy. They undoubtedly help some children to live a calmer and more functional life. Extra emphasis on the some and on the non-health, pro-function related outcomes.
The roads that address causation are under researched and inadequately documented. When they are properly researched they are ignored, buried or pilloried by those whose philosophies they challenge. These are the biomedical, integrative, nutrition – health related medical strategies. These are the ones that examine why the things we call ‘autism’ happen and what we can do to treat those.
In a culture of evidence based medicine, are anyone else’s spidey senses prickling that we are actively encouraged to favour the non-medical strategies. We are constantly bludgeoned over the head with ‘the science’ and yet we are not publicly acknowledging the evaluation of the science of autism at all.
What’s up with that?
When mainstream opinion and policy makers discuss autism, they are describing outcomes as though they are symptoms, behaviours as though they are conditions and interpretations as though they were facts. There is little acceptance of a biological basis to autism. There is no awareness of the health status of the average child with autism.
It could be because the stakes behind establishing those things as a matter of public health record are too high. The change required to attempt prevention strategies based on the hard learned understandings of hundreds of thousands of thinking autism parents is too expensive, too wide ranging, too hard for health officials to enact.
So, we continue to allow a condition that is disabling our children at a rate of knots to be poorly described and treated as a mental health condition, to be managed. We describe it by how it feels, not by how it is. Worse, we leave its treatment in the hands of those who simply accept, and do not question, its existence.
We may as well go and sit in the refrigerator and make nice cups of (cold) tea for each other.
When change is unwieldy and expensive, it doesn’t seem like a coincidence to me that the powers that be choose the passive, self managing, just accept it and be quiet road. To them, I’m guessing it seems like a cheaper option, a safer option and an option that ultimately asks nothing of them.
In this non-thinking autism state, nations may not question, but people do.
Parents who see their child mysteriously change, wonder why.
People whose children lose capacity after routine medical recommendations, don’t believe that should have happened.
Families crippled by the financial and emotional cost of seeking appropriate medical care for their child who has been defined as not having a medical condition, are oddly perplexed about why this occurred in the first place.
The system, such as it is, generally chooses to attach to the feelings behind these parental questions, and ignore the thinking. After all, there’s no place for emotion in science, right? It’s a persuasive argument, that shifts many of us back into the sheep flock while we lick our emotional wounds.
But, if you are a newbie in the field, know that if the sheepskin coat looks like it might smell bad, there are many in your circumstances who have acknowledged their feelings and transformed them, along with rigorous research, into advocacy and action.
If public health officials charged with managing autism, knew what we (as a society) were dealing with and accepted the reality of what we (as a society) have caused, then we might have a fighting chance at both healing and preventing the broad base of medical conditions that we (as a society) choose to call ‘autism’.
Healthy kids don’t stop speaking for no reason. Healthy kids don’t bite themselves and others. Healthy kids don’t covet pieces of string and more to the point their parents are not encouraged to view them as cutting edge contemporary artists when they do. Oddly enough, neither do children choose to not control their bowels, have seizures, compromise their own immune systems or react violently to environmental toxins and compromised foodstuffs.
The medical fraternity isn’t dealing with much very well, from what we can see. They are under stress from all sides – financial, logistical, technological. I can only imagine the fact that we have handed autism to those who manage the outside and ignore the cause, is somewhat of a relief to them. The previous generation of autism parents who appeared to accept the the futility of questioning the condition must have been a massive relief. The fact that these accepting parents are rapidly dropping in numbers and being replaced by angry, intellectually rigorous, politically organised autism parents must be a source of gastrointestinal upset for them. Lucky they have a drug for that, right?
If you join the aforementioned grumpy ones, know there is one thing and one thing only unifying us – the need for change.
If we want answers, we have to ask questions, even if the questions are large and confronting, even if the answers don’t come easily or quickly.
If you don’t want answers now, you will as your child ages and the strategies you have been offered have likely not magicked the challenges away. The acronyms and the obfuscation of the condition and the medications do not heal the condition, they are a sometimes useful short term fix. The promises of the brochures and the programs do not heal the condition, they manage it, at best. While we treat it from the outside in, we are ignoring the elephant (the herd of elephants) in the room – something is causing it and there is no consensus on what – lots of workable theories, but no consensus. That is a shaky shaky foundation for intervention that is so enthusiastically endorsed by the mainstream.
You might not want to think about that right now, but trust me, you should. It feels much much worse when you look back and see how much time and money you wasted, how little progress has been made, and how much worse the condition has become.
When Billy was diagnosed, the number we were given was 1 in 10 000. It’s now 1 in 68.
When Billy was diagnosed, there were two predicted trajectories – severe autism or Aspergers, with little mention of any medical involvement. Even the most conservative of autism organisations acknowledge this is no longer the case.
When Billy was diagnosed, I was assured he would be mainstreamed, healthy and happy. That is not the case for him, or for the overwhelming majority of his same age peers. It’s just not.
And no amount of cuddly sheepskin makes that feel like a good thing. Because it is not. They didn’t know much then, and they don’t know much more now. Platitudes and promises will not heal your child. Sheer hard work, rigorous research and major social change might.
Though it doesn’t feel like it, right now, I am patting you on the back.
It may not make you feel better, but I hope it makes you think.