Sitting on an uncomfortable plastic chair waiting for your turn to see the “specialist” who seems to hold so much of your future in their hands, you reflect and remember. Remember the blood tests, the interviews, the EEG, the ECG, the CT, and the MRI. So many tests, appointments, discussions.
Hours spent running scenarios, reading online opinions ranging for the way out conspiracy theories to somewhat credible to of course the more reputable and reasonable comment. So many hours spent wondering and worrying. Leading up like a juggernaut to the meeting about to take place on the other side of this waiting room.
Away from these plastic chairs that are so uncomfortable, in the plush and luxuriously appointed office. That office where credentials hang in ostentatious frames. The specialist sits behind an acre of impressive desk on plush leather executive chair.
The news, it’s time to hear the news. What will it be, which of the scenarios that have been racing through your head will it be that this impressive credentialed man will confirm is the issue with your child. Will it be cancer? Something else just as horrible? Some degenerative condition?
What will be the sentence, the cost, the prognosis. Where will it lead from here. What comes next. Will my precious child be ok. Is this a death sentence in waiting?
It’s a terrible time of waiting but at last you name is called and you shuffle in to sit before the great desk. This time the seating is far more amenable but no less intimidating. It feels like your very fate is in the hands of this professional who sits before you. It’s an incredibly scary and humbling moment.
You wait what seems an eternity.
The Dr, sits, almost staring, but with kind eyes. This doesn’t seem to put you at ease at all, it’s just something you happen to notice. You notice this as the silence extends in time. Almost as though on both sides of the desk a contest of who will be first to break the silence is in progress.
Finally, breaking the silence, the Dr thanks you for coming in, sympathises with the barrage of tests and assessments you have taken your child through. With understanding expresses how it can’t have been enjoyable or easy but that it has been necessary to come to a conclusion.
What is this conclusion is all you can think, it is everything not to blurt it out like a demand, a desperate plea. Quietly and kindly the Dr, explains that your child does not have a life threatening disease, does not have a degenerative condition that will slowly sap away at his life. There is no evidence of likely seizures or epilepsy.
The initial relief is palpable, you almost don’t hear the rest as your heart is filled with such relief and your brain is racing with joy and celebration. Your child is alright, is not dying. You catch the word spectrum. And suddenly your joyful heart dives once again towards despair.
You know that word, you’ve heard that word. It is used in conjunction with another word. Another horrible word, a word that is associated with epidemic, catastrophe and at times vaccine injury. That word is Autism. You quietly sob, as your momentary joy disintegrates into despair.
You manage between sobs to ask the Dr What is the treatment? What can be done? What can we do?
The Dr, stops, for a moment, looks intently, then suddenly roars with laughter. Stops, apologises for his abrupt and out of character behaviour, this seemingly utterly not appropriate laughter. And explains…
You may have heard this is a terrible thing? You may have heard this is an epidemic, and you are destined for a ruined family, that there is a rising tide of terror with this Autism thing. You will have heard through national charities that there is a fight, a battle, a war against this Autism thing. You may have even heard of so-called cures. Let me be clear please, and this is very, very important. Are you listening carefully.
You stop, quiet your mind and focus and nod slowly.
Kindly they say, there is no treatment for Autism.
A pause, which you fill with more catastrophising, but quickly the Dr goes on.
No there is no treatment for Autism, because no treatment is needed. There is nothing wrong with your child, they are not sick, disordered or diseased. They don’t need some treatment to cure them, they are not sick.
Now your head stops spinning as you mind, your hopes, your dreams grasp onto that tendril of news. Not sick. But hang on isn’t this an epidemic a terrible thing…
Knowing what you must be thinking the Dr goes on to explain that Autism is not as it has so often been portrayed a demon of destruction, but simply what is known as a neurological divergence, yes, something different has occurred in the development of your child’s neurology, but it’s not something wrong. It’s different, not less, different not broken, different not inferior. It’s not a disorder or a disease, he says, it is a different way of being.
With head spinning you leave that office, armed with information to make contact with support groups run by autistic people, advocacy groups to assist with accessing services to support and accommodate your child and assist you to ensure they can and will become all they set out to be.
You now understand your child is different, not less. Not broken. This autism thing, you don’t have to fight it, you don’t have to battle it, you don’t have to cure it or treat it. You now understand you need to accommodate it, to listen to it, to accept it. But that no you do not need to be a warrior against it. In this moment of realisation you become aware that in fact you have just become your child’s greatest, most important and most influential ally.
Use that power, use it to bring about acceptance, accommodation and inclusion for them.
Use that power, use it to make it known that your autistic child is Never Less Than Everything.
Wouldn’t that be something…