Welcome. In this section I would like to explain just what this is all about, and make sense of the autism self-advocates world.
To many parents, sites such as mine make sense in conveying their children's experiences. Who and what they are, how life is, how they see things and how the world should appreciate them as people.
To other parents, this is madness.
With family members who cannot lead independent lives, who appear to be suffering all the time and cause enormous pain and suffering to parents and siblings alike daily. With a deep, gut reaction against autism in all its forms of disfunctionality. With the profound need to cure it, fight the condition, hate it and rage against something that appears to have practically raped your child and deprived them of their common humanity. With all these experiences at once, you find a site like this that seems to advocate autism as an experience, a part of nature and a fact of life to be accepted and even seen positively.
Madness to some. Worse than that to some others.
A movement has long existed, mainly based in the USA, to stigmatize and reject any acceptance of autism. The reality of neurodiversity, that there are many different types of human brain and that autism has merely exposed this fact through the profound dysfunction its particular variety can cause, seems to me to be rejected. A belief in there only being the healthy and the damaged replaces it. An absolute belief that the only valid human state is that of the 'normal' person is venerated above all as sanity, common sense and reality. All other beliefs are absurd, childish and stupid.
Another movement has arisen that believes that autism is not hereditary. Here, vaccines, metals such as and primarily mercury, and 'environmental triggers' are held responsible for the condition. Some conceeding is allowed that there is a 'genetic component'. It is equally held, that there are conspiracies worldwide between pharmaceutical companies and governments to hide these phenomena from the populus.
THE NEURODIVERSITY MOVEMENT
The Neurodiversity movement is mainly led by people with the condition who are functional enough to speak for the rest who cannot, on account of their innate autistic natures. It is the appreciation that our autistic natures are innate, what define and make us who and what we are, that is the point of it.
When I was 16 I stealthily bought a copy of the Naked Civil Servant, Quentin Crisps groundbreaking autobiography of being openly homosexual in the world of 1930’s Britain and onwards. I had no other reference for the uniqueness and distance from others I felt. Yet there was much joy in being me. The pleasures of solitude. The enjoyment of creativity where my energies engaged with an activity and I easily became euphoric whilst keeping a reign on myself. Like riding overjoyed horses and trying not to be killed flying off.
I did not know I had the condition until I was 41. Such was my capacity to muddle through life. You don’t have to succeed at everything to live a life that gets you by you know. Nor do you have to be some hugely successful winner to live without the support of others. I managed not to have to call on people for money, and accepted often poor living conditions in order to pay my own way and get by on my own. I found friends and the kind of support anyone needs.
But I am unusual in many respects, and parents reading this may not see their own family in me. I have written this in the hope that maybe you may see a better future for the people you love? My point of course, is that life can be brought down to relating, working with and relationships with others, and the capacity to simply look after you in all the ways that adults usually need to in our society.
Jobs – relationships – where we live. The checklist of humanity.
Neurodiverse people can struggle with these issues terribly. For some, their unique experience is such that they live each day in a daze of being overwhelmed. Lack of executive function mean they simply cannot do certain things in a straightforward way. Yet others, no problem.
In some cases, parents reading this have family who cannot speak, communicate in any ordinary way or apparently think in a recognizable manner. Devoid of common ground, parents sink into isolation as they live with someone who does not relate to anyone. So they relate to that, and go along the same path. Parents are deprived of sleep, assaulted and have constant demands made upon them to support, to cope, to put energy into a child that does not entirely grow up, no matter how old they get.
Neurodiversity addresses these issues as far as the person with autism goes. It says that no matter how antisocial and relatively ‘bad’ the person with autism may be for parents to live with, this is who and what they are. No matter how much parents hate the state their children are in, this is what those people are. How they are made. Their natures.
So you have a huge paradox:
· People with autism have unique autistic natures.
· This leads them to behave in equally unique ways, to be vulnerable in unique ways and not to grow and develop in the ways most ordinary Neurotypical people do.
· Parents constantly see things in their children they cannot relate to, and that they may not understand. Abnormal behaviours, weird ideas and strange, crazy seeming actions.
· Parents cannot accept this state of affairs. Their innate natures, the society they accept and support, and the requirements of basic survival and any kind of progression, define these people with autism as wrong, incorrect, invalid and to be rejected.
· Hatred, stigma and trauma ensue. Parents are forced to love someone that is like the foster child from hell. It is as if they have a possessed child, a demon from another planet in the family.
· Or it is not that bad, and you kind of get used to the eccentricity???
The Neurodiversity movement accepts all of this. Many people with autism are actually parents themselves. Knowing a few of them, it is easy to explain that acceptance comes with recognition of themselves in their children. A shared nature. Lucky them you may think?
So to sum up. Neurodiveristy is the acceptance of a human nature in someone that is usually not like most peoples. It is where you realize that in them, a person with autism has been born with a unique nature, differently-minded, and that this is their reality.
LACK OF ACCEPTANCE AND APPRECIATION.
At this point many parents will give up reading. This is crazy – naïve! Oh yeah, just leave my child for any length of time, and see what happens? You cannot accept this relative disability, this lack of independence. This socially and personally self-destructive nature? (These are the worst-case scenarios by the way. Many of us are not that bad).
We appreciate that full well, as we understand why you would turn to biomedical interventions and ‘cures’. Treatments and therapies. Anything to normalize your child. To stop this state of affairs, remove it from your lives and get things relatively normal.
But we say to you – are you curing here, or forcing a state of affairs onto someone?
Is the behaviour you are cultivating in people with autism natural to them, or is all this ‘normal’ behaviour actually abnormal to them? Unnatural and deviant by their standards?
Hence the book I have written, in which the ordinary world is the crazy one. The nature of autistic people is seen as acceptable and ordinary – no matter how many disturbing endorsements of eccentric or destructive behaviours I add in.
It is the appreciation that no matter how bad, odd or terrible the behaviour of people with autism is, that is who and what they are at heart that counts. Simple as that.
IMPOSSIBLE TO ACCEPT?
I don’t blame you. Really. I reckon I can appreciate your point of view, having spent my entire life in a Neurotypical frame of reference. Daily seeking acceptance and safety in being seen as ordinary and like everyone else. Constantly trying to enjoy the company of others, work well with them and co operates. Relating, relating, relating…
When you see someone who does not behave in a way you instinctively like or accept, you reject. You deny common humanity. You don’t want to listen to them, consider their perspectives or ideas. You do not respect them. This can lead to hatred, assaulting them and ganging up against them with others. Do you want to do that to people? Really?
Just because someone does not have your innate nature that you share with others, does not mean you should reject and hate them. They may seem obvious, but consider how you feel towards people with autism? You may divorce their condition from themselves as people? This is a big mistake. It is like dividing your gender identification, your race and your sexuality from yourself. Or your nationality, your love of a football team or anything you think does not define you that greatly as a person. Ah, but all these things are there inside you somewhere, making you up.
See? Some factors define us more than others. But overall, and together, they are us. We believe we have free will over and above all the things we are, we like and we accept. How much do you think you do?
The forces of autism are strong, deep and innate. They define our human nature, exactly the way neurotypicacy does. Like the urges and instincts of most people. From birth, they define us as whom and what we are. Hate autism – hate us.
Paul Wady, July 2011.