Autistic Self Advocates are familiar with De-Voicing. It is the ignoring and/or belittling of input from autistics on autism, or even attempting to silence them altogether.
A recent example was mentioned by Orac. Minnesota State Senator Jim Abeler is a Chiropractor who set up an Autism Spectrum Planning Group after his proposal to create a statewide autism registry was met with an outcry. The group was intended to set an Autism Task Force and originally had three members – Jean Bender, Wayne Rhode, who is an antivaxxer, and Dr. Shery Grassie of the Minnesota Consortium of Citizens with Disabilities. Later additions included autistic individuals.
After four months, Abeler disbanded the Group and appointed a new one. This new Group had no autistic members whatsoever.
This is appalling. Imagine if an organisation to support wheelchair users had no paraplegic or quadriplegic members. Or if an organisation for the advancement of People of Colour had only white members. Nobody would be willing or even able to take such groups seriously. Yet Abeler disbanded a team for helping autistics with autistics on it, and replaced it with one that has no autistic members. It’s an excellent example of de-voicing.
I am a firm supporter of Identity-First Language. On a Diply article, I asked that they use Identity-First language when referring to autism. I was then asked by another commenter to explain the concept, which I did. But then someone responded:
I dont have Autism but my son does. I disagree and prefer to refer to my son as someone who has Autism, he also has brown hair and a funny personality etc. These are all parts of him but not all of him.
Which totally missed the point. Identity-First Language does not disregard the other attributes of autistics, it simply highlights that autism is a part of who we are.
I was angered that my input as an autistic was being disregarded and belittled. Fortunately, another autistic had my back.
As an autistic person myself, I personally agree with Julian and most people that are autistic that I have interacted with also perfer this. If you’re not autistic you don’t get a say in this.
Precisely. If you’re not autistic you don’t get a say in this.
Autism Speaks, now largely moribund, was notorious for ignoring autistics while supposedly advocating for them. When it was founded, it had no autistic board members. After years of protests, John Elder Robison, an Autistic Self Advocate, was finally appointed to the Board.
In November 2013, Robison resigned after Autism Speaks issued a “call to action”. From his letter of resignation:
For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps, beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.
We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.
Robison was a blatant example of tokenism. Despite him being autistic, Autism Speaks completely disregarded his input and continued with actions that harmed the very people they claimed to be advocating for.
One autism parent who gets it is Matt Carey of Left Brain Right Brain. As the father of an autistic child, Matt understands that to be truly genuine, workable and successful, efforts to help autistics must be led and guided by autistics.
So, no, when you advocate, you do not advocate on behalf of what my children need. What you do is minimize and marginalize them – especially when you compare their disability to something like women’s rights.
MJ’s argument was wrong on multiple levels. Autism advocacy is not a zero sum game, and I pointed out that not only could I advocate directly for his children, but that in a few years his autistic children would be autistic adults, and my advocacy now would help them then. What was bad was that he simply wasn’t prepared to even consider my input, to the point of wrongly claiming it harmed his children. To make it worse, he doubled down when I called him out.
I will not be de-voiced, and I will fight it any time I detect it.