**I apologise in advance for some of the articles I have linked to in this post. In covering the dross that April brings to autism world, some toe dipping in the grotesque waters of ‘Keep Calm and Suck It Up’ is required. It is heretofore referred to as ‘glurge‘ and will be expunged from meaningfulness in due course. I’ve tried to balance with some more useful stuff as well**
It’s that time of year again. You’d think after 10 years of this game, I’d be used to it. And yet, it just gets more frustrating.
I used to be able to float through this stuff and find the bits I needed. Now, it’s genuinely, literally and completely making me sick. My heart is pounding, my thyroid is busted, despite a great diet and a total life revision I am chronically deficient in things I shouldn’t be deficient in. It’s crazy.
Why is it crazy?
It’s crazy because I, and many many parents like me, want nothing more than to prevent the preventable in children. We want to do this because we have seen our own healthy children regress, or we’ve seen our own children fail to develop as expected, and we don’t think other kids should have to go through this if there is any chance it can be prevented. We can all see it can be treated, to varying degrees of improved outcome, so it’s a no brainer that we should try prevent it as well.
But, say that in the wrong place and you are a bee’s dick away from Hitler. Say the ‘v’ word and eyes glaze over as people picture you as some pubic-hair-plaiting-stoner-breathairian (not that there’s anything wrong with that). Mention your own story and you are ‘ignoring the obvious science.’ Best of all, if you happen to mention anything negative about ‘autism’ in the wrong place, an autistic adult will be cruelly used as a ‘how could you question my existence’ smoke screen.
It’s all bullshit. Every last wasted ounce of energy. Clouds and clouds of nonsense that cover the fact that we have a giant, wide and deep bottomed problem on our hands and we do not know what to do about it. So instead, we will pretend it’s all OK.
Well… it’s not OK. Not with me. And I no longer care to spend time listening to people who think it’s OK. If one more mealy mouthed parent/doctor/’academic’ tells me that it’s better not to use words like disability because Billy ‘might’ not want to think of himself that way, I will start hurling Thomas trains at them. And I have access to quite a few of them.
Billy doesn’t get that choice. We made it for him.
Who ‘we’ actually are, is up for contextual discussion.
We could be his parents by choosing sub-optimal nutrition and medical intervention for ourselves and then him; or our parents for same; or his doctors for not carefully enough including the ramifications of implementing standard operating procedure again and again and again; or the autism industry that promises big, charges for more and delivers almost nothing while shrugging its shoulders and saying ‘Oh well, that’s autism’; or maybe parts of the education system that betrayed him and so many more in their covert square edge smoothing operation; or most reprehensible of all with blue day approaching, the part of the autism community that has decided it’s more important to viciously undo those to think differently about autism than to allow people to access help in whatever form they choose.
Billy doesn’t get to pretend he is not autistic through assiduous use of behavioural therapy and medication. Billy does not get to celebrate his difference in a protected social environment full of computers, lego and pizza loving peers. Billy is too busy hauling basic human function together. If your child is not, you are fortunate NOT more correct in your choice of terminology than me. And yes, I am being charitable.
We, as his parents have every right in the world to be angry about what has happened to our son. More to the point, we have every right to advocate for change to the systems that contributed to what has happened. See a couple of paragraphs above if you are wondering what systems I am referring to.
For each of the ten years Billy’s life has been compromised by this nonsense, I have a question that is yet to be answered by the administrators of glurge.
1. What is ‘autism’?
(like what biological function causes human kids to exhibit the same triad of impairments, that we conveniently aren’t allowed to call a disability. Why are we pretending that words like inflammation, encephalopathy, seizure, motochondrial, immune dysregulation, allergy and intolerance are less preferable than picky eating, tantrum, zoned out, stimming, lazy, unfocused and hyperactive?)
2. Where are the 2% of adults with autism?
(because if it’s better diagnosis making the numbers rise then the undiagnosed hordes are somewhere, functioning sub-optimally without intervention, early or otherwise that is essential according to the powers that be. If 2% of the population were somehow able handle school without support, though most current ASD school kids find that quite challenging, which magic pixies made their adult lives suddenly tolerable?)
3. Why can’t we talk about vaccines?
(If vaccine package inserts say autism is a possible long term outcome of use, how come we accept the statement that ‘science’ says vaccines don’t cause autism? In related matters, what perverse logic says every human will react the same to any introduced substance? Has science ever been in a room full of drunk people?)
4. Why do we use ‘science’ as a weapon to shut down discussion?
(When there are countless peer reviewed studies linking vaccines and autism, why are we pretending there isn’t? OK, there are 84 here, that’s not countless, but it’s not zero either. If they aren’t convincing, search the Australian Government’s database of Adverse Event Notification. Or watch this. It is as black and white as a rainbow, anyway, between statistics as science, anecdote vs science and my personal favourite the rejection of validity because the system is screwed anyway. Clearly, science has some issues)
5. Why are people so determined to normalise what is deeply deeply atypical?
(forget, for one second the tendency to go ‘normal, what a toxic word’, and instead focus on the experience of realising your child is not achieving milestones and is instead regressing and increasingly physically sick. If autism involved 2 % of the population developing a disfiguring rash, you can bet your life we’d be addressing causation as a matter of urgency)
6. Why do we hide behind arguments about semantics?
If disability is such a dirty word, why does the CDC refer to a speech and language impairment (the thing so many parents cling to like desperate autism avoiding limpets) as a disability? So, all that ‘my kid isn’t disabled’ means exactly what to the systems that oversee the wellness of the world? While we are on ‘d’ words, why is a ‘disorder’ preferable to a ‘disease’? Why are we ‘dicking about’ pretending that arguing the values of words is more important than focusing on the actual condition we are discussing?
7. Why are we so afraid of common illness?
(let’s not sink into a pointless discussion of whether you would rather your child be disabled by autism or disease, and focus on the question of why it’s so not OK to be sick anymore. What’s wrong with a few days off school or work with the flu, well, except that the world has to adapt to the fact that you are away and that costs money, and also you lose money because no-one’s got a salaried job for life anymore… ah, OK. I see… carry on…)
8. Why have we accepted ‘there is no known cause’?
(How could any developmental condition, especially one that’s growing in impact daily, including ‘autism’ NOT be related to nutrition, the environment or the physical health of anyone involved? Seriously? After all these years? Why are we letting paediatricians say ‘we have no idea’?)
9. Why is autism intervention not related to physical health?
(How could it possibly be that improving the health of an autistic child through nutrition and lifestyle modification isn’t helpful? What deep Catholic denial was I in when I accepted that one? In other questions, why have we not studied more of the legions of children who have gone through biomedical interventions and seen improvements)
10. What are we doing about it?
(Why are we, and I refer specifically to Australia here, doing a grand total of nothing yet at a government level, to understand why more children every day are being diagnosed with ‘autism’ or how their ongoing health might be related?)
I’m done arguing. I’m taking action. Well, as much as my own health and my child’s health will allow.
I’m working with the system – finding alternatives in education, working with doctors with open minds and credible careers, connecting with like minded parents and service providers. We are all moving forward practically and medically, and more importantly, we are leaving the unhelpful nonsense (AKA glurge) behind.
It isn’t OK to hide behind anything. It isn’t OK to take each other down in order to build ourselves up. It is definitely not OK to co-opt people as emotive smokescreens in discussions that matter to the people having them (even if they happen to disagree with you). These things might be natural human reactions but they are also basic political strategies designed to shut down subversive agendas. We do not need to be distracted this easily.
No matter how you stand this condition up, it is an emergency. We are not set up to deal with it now, never mind to approach the future when there are not just kids unable to handle kid life, but an additional very obvious cohort of adolescents and adults unsupported in their existence.
One of them, unless we find something to help him that currently isn’t common knowledge, will be my son.
I will not let that happen. What responsible parent would?
That was another question. Ugh. He’ll be 11 soon. Indulge me.
(Image: Clifford Harper/agraphia.co.uk)