Self-advocacy is not easy. It is true that anyone can self-advocate, even through simple actions like saying “no” to another person, or refusing to follow an imposed activity. And that’s why it can be hard to self-advocate. When we say “no”, when we refuse to do something we don’t want to do, we are said to be non-compliant.
That’s especially true for people like me, a non-speaking autistic who needs a lot of assistance with everything. It is also true for some people who live in group-homes or other facilities, where the schedule made by the staff must not be disrupted, and where individual preferences are ignored. This is ableism.
Advocating in the name of autism is “sexy”. There are many – too many – organizations doing some kind of advocacy, purporting to do this on our behalf, to make our lives better. Most of them do not have an autistic in a significant role in the organization; they were probably started and are run by parents or family members of an autistic child; they have “experts”; they are also full of ableism.
We, self-advocates, are finally speaking up in a more organized way. We talk to each other; we share a common desire to be heard and to be respected. We are the kids who were secluded, misunderstood and considered damaged and “wrong”. We grew up. Autistic children do become autistic adults. At different times in our lives, through a diversity of manners, we saw what was, and still is, wrong with how the conversation about autism happens. We want to end ableism.
Talking about those organizations: most of them are run by parents and directed at parents. They claim to be, and sometimes they are a resource center where families can find information about therapies, education rights, support groups, services and more. Sometimes such information is valid, sometimes it is dispensable.
There is one very important detail about these organizations: they talk almost exclusively about children. Sometimes an issue concerning a teenager is considered priority; autistic adults hardly make it in the conversation.
The ableism, so ingrained in the culture of organizations created by, and directed at parents, is even more evident in their reluctance to interact with autistic adults, to have autistic adults as decision making members of their board of directors, to change language opposed by a great number of autistic adults and to stop using fear in order to raise money.
The language, and the fundraising images, stories and deceiving use of statistics harm us all. Such organizations ignore the calls of self-advocates for a more service-directed type of advocacy, instead of a “cure”; they continue to use words like “devastating” and “epidemic” (such epidemic does not exist) and they insist on the “awareness” campaign.
The “awareness” message says: beware of autism. Your dreams for your child are now shattered and the events in your life will be devastating.
I believe, and many other autistics also do, that the message should be more like this: we are autistic, part of a large spectrum, and we all need some type of service or accommodation. We need acceptance. If you fear us, or who we are, your children will experience the same stigmatization we experience now. You are the majority that can help us, the minority. But we are the ones with the experience to help the future generation of autistics.
Changes are slow to come by because neurotypical advocates still don’t see us as valid voices. They have been doing the same thing for many years and they are in denial about our legitimacy on autistic matters. They don’t see themselves as ableists. But they are. If we are not heard, if we are seen as not well enough to advocate – or not autistic enough to advocate – we are being disrespected.
And that’s where the “hate” talk comes in.
Because more and more of us are speaking up, writing blogs, showing up and presenting at conferences, and challenging old concepts, we seem like a loud, angry group. People say we are hateful.
First, an explanation: not only those “high-functioning” autistics (a neurotypical favorite description) are part of that crowd of writers and conference presenters. We, the ones once so pitied, are active participants too.
Many of us are angry. Some of us might even use the word “hate”. I cannot speak for all autistics, but I believe that “hate” is not the actual feeling. We are very frustrated, and each one of us is trying to be heard.
When neurotypicals say we are hateful, it is usually following our response to mentions of the need to cure autism. The words used are “hopeless”, “tragic”, “without a future”, “descending”, “and devastating”. Using such descriptions to attack autism is to attack us; curing autism means getting rid of us.
How should we feel being referred to by such negative words? Being told we should not exist?
We then speak up. And people say we are hateful.
Because we are a minority we must be relentless.
We do not hate parents when they say it is hard to have an autistic child. But we do remind them that it is harder for the child, whose brain deals with the world differently, and who hears and sees negativity directed at her, only because she is different.
We’ve been there. We can help by saying what helps, what hurts. This is not hate.
We don’t hate parents but we are not going anywhere. We will continue to talk and write about the need for acceptance – ours and their children’s. Autistic children are part of the autistic community. And we will point out the flaws in the autism “advocacy” organizations – they never invite us when talking publicly about autism.
It is not hate when we are fighting for the end of the stigmatization of autistics, adults and children alike. But we won’t be silent when the conversation leads to such stigmatization.
It is not hate when a minority refuses to be defined by a neurotypical majority, and asks for respect, inclusion and acceptance.
It is not hate just because the majority does not like what we have to say.
About the Author, Amy Sequenzia.