Originally posted on LJ May 28, 2009 as On Neurodiversity
I want to talk a little about Neurodiversity, at least, what it means to me.
This is something that I particularly want parents with newly diagnosed autistic children, of any age, to understand.
What Neurodiversity is:
take the two roots of the word, Neuro and diversity.
Neuro, standing for Neurological, basically, the brain.
Diversity: "1. the state or fact of being diverse; difference; unlikeness. 2. variety; multiformity. 3. a point of difference." (http://dictionary.reference.com)
In other words, the diversity of the brain. In Anthropology, there is no one normal human society and culture. We have the same needs, but different ways of getting support and the form of those needs. We think differently depending on our culture and society, our environment. We also think differently because our brains aren't all the same. What Neurodiversity is about is to accept that there is no normal brain, that being different is okay, and to work together to discover how we all can participate to the best of our abilities in our lives.
We've been depicted as an overly-positive movement, determined to make everything about being autistic as good and okay. While yes, we are zealous in our efforts to promote the positive sides of autism and to convince the public that autism isn't a scary soul-stealing disease, we also understand that it's TOUGH parenting an autistic. It's tough parenting/teaching a NT child as it is; it can be extremely tough to parent/teach one of us. So yeah, we realize it's not all sunshine and roses. But hear us out when we say it's not all misery and that we don't want to focus on negative aspects, but think positively about ourselves.
And yeah, we're not your child/student. To be frank, NO ONE is. But we've BEEN there. We STILL ARE. It might just be that we can help to understand and support, even give aid. After all, even though we all have had different experiences, we think and respond very similar.
I've seen parents claim that we are a movement of only Aspergereans/"high functioning" autistics who cannot possibly relate to their "poor low-functioning" child (direct quote, actually). This is not true. ASD is a spectrum disorder and it's a developmental disorder. This means that there is an extremely wide range of abilities and disabilities. This also means that we develop differently than what is typical. The development of our skills can come slowly and may need some help. Childhood is the time when we LEARN the most, after all. But none of us are STATIC.
This means that many of us who once were labeled as "low-functioning" developed skills and became "high-functioning". As we grow, we develop. There are also many reasons for what is perceived as fluctuating "functionality", or "regressing" and becoming "more autistic". (More info here)
So to repeat myself, we WERE there. And we'd like to help.
It may be optimistic of us, but we believe that with the proper supports and accommodations, as well as positive attitudes, acceptance, inclusion and encouragement, that every autistic person is able to communicate, interact and contribute to society while meeting individual needs and respecting one's sense of self.
This isn't to say that getting to these goals for everyone won't be hard. But we think it's better than the alternative view of seeing ourselves as defective, diseased or broken. Many of us don't like to be labeled as Low/High Functioning. It's comparing us to each other, which really isn't a good way since we all develop and grow separately. It's also harmful to our self-esteem, as it puts a limiting label on us. It makes us feel like we have to compete in order to be worth anything, or that we won't ever be anything more than the label. When the latter happens, it's a self-fulfilling prophecy.
One last point; some have argued that Neurodiversity is about just us, and is not about "the rest" of autistic people. Mainly, the children who are labeled as low functioning. I think this is because parents, teachers and caregivers see us as "high functioning" or at a level where we don't need supports. This isn't true. Life is not a matter of static levels, where things remain the same once you get to a certain point. Life changes, and even though we dislike it, we are all too aware about the changes that life takes us.
But the point is this; think of us as your children that have come before, who have faced and been subjected to the past and present treatments and therapies. Or those who have slipped through the cracks of the medical community. Many of us have faced bullying, neglect, incorrect treatments, misdiagnosis, and various forms of abuse. Yes, we feel pain and want to lash out at those who hurt us. But not at your children. If anything, what we want is that what happened to us does not happen to your children.
And so, nothing about us, without us. All of us.
edited August 8th for accuracy. "It's extremely tough" to "It can be extremely tough to parent/teach". Thanks jypsy!