How self-advocacy is misused to stop the progress of autistic people

None of

After I was diagnosed at 40 as autistic, I wondered what the next steps for saving my life would be. I asked my psych evaluator and allistic-led sources in my area what I should do, and the answer invariably was “keep self-advocating.” I looked into what “self-advocating” meant and  here’s what I found:

“Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system. The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.” – poorly cited Wikipedia entry

“n. the practice of having mentally disabled people speak for themselves and control their own affairs, rather than having non-disabled people automatically assume responsibility for them” – Collins Dictionary online

Well that sounds delightful and empowering!!!

Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates.”

But that’s not what the professionals telling me to “self-advocate” meant. It didn’t mean that I was to have more control over what drugs I was prescribed, how I was addressed by professionals, that I was to be led to appropriate resources and helped to access them, or that I would be able to “call upon the support of others.”

They used the term “self-advocacy” to mean the opposite of that. I would speak with a mental health provider and ask for help with accessing programs, starting programs that would help my community at large, support to fight the over-pathologization of my condition by local medical professionals who wouldn’t listen to me self-advocate, a therapist who was autism-informed (for adult women no less), or even training for how to self-advocate, and the answer was always, “We can’t help you with that. Those things don’t exist here. Keep self-advocating.”

It took me a few years to find the right people and programs.

I thought reaching out to professionals was, first of all, what they wanted us to do because we are not considered experts on our own inner experience. I also thought looking for ways to help yourself by accessing available resources was self-advocating.

They were in effect telling me to “bootstrap” my way out of systemic oppression with no help from the autism-industrial complex. Doctors DO NOT generally listen to the opinions and treatment plans, no matter how well-informed, of non-conforming, invisibly disabled women. This is clear by the number of posts in autism groups which relate how abysmally difficult this is because of bald-faced intersectional discrimination. I needed someone, anyone, to go to the doctor with me to a. be a witness to my ill-treatment, and b. back my ass up in there! As a cognitively disabled woman, I do not possess the necessary credibility. But I was being told, “Go up against this powerful man and impenetrable institution alone.”

Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need. 

Autism centers in America DO NOT generally have many resources for autistic adults including classes for self-advocacy training. Even though autistics are giving one another tips and tricks online, we still run up against the wall of our own poverty and discrimination. The problem isn’t that we aren’t self-advocating or trying to; it’s that people refuse to give up the power they have over us. We have no leverage.

It’s interesting to note that other culturally marginalized groups are not asked to self-advocate, because they are seen as being oppressed rather than intrinsically broken. As the black community has pointed out, they simply don’t have enough resources to self-advocate under the level of repression they experience. Neither do we, no matter how good we are at being the squeaky wheel and insisting upon ourselves. No matter how much we research our condition and the medications we are given. No matter how self-aware we are.

Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness.

We need people outside our community to care enough to reach down and help lift us up, and share their superior coffers and connections and reputations, because we are often literally unable to speak for ourselves and not heard when we do. For instance, black people need direct action from white people to reach their civil rights goals, without whites taking over the narrative and stealing the funds.

Autistic people need exactly the same thing from allistic people. Stop putting all the onus for change back on the most powerless. Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need. 

The truth is this: self-advocacy is primarily a term used to put down the efforts of #actuallyautistics advocating for all of us. Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates.” In fact, most of us can advocate for others better than we advocate for ourselves. This framing gives disability organizations permission to not properly compensate autistic activists for the unpaid labor we do to give our community a centralized voice and civil rights. Our huge hearts, passion, and sense of existential urgency is leveraged against us and we burn out with little to no support.

Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness. The saddest truth in all this is that the autism industry does not want us reaching our own internal consensus on the issues, joining together, and advocating for systemic change. It would really mess up their bottom line if we became self-determining, a true community. We would have a united front for ending ABA, gaining financial power, building cultural credibility, and eventually not needing them once we have autistic professionals, researchers, and representation in place.

Enjoy this fun video!

Is it time to get rid of the autism puzzle piece?

 

infinity-clipart-eternity-3-300x140

 

I have to admit this was nothing I’d ever thought about much until a few weeks ago when a few new acquaintances pointed out that the generally accepted symbol for the autistic community is the blue or multi-colored puzzle piece and that it makes them uncomfortable. Being recently diagnosed, I assumed my own interpretation: I had been confused my whole life because I didn’t have a scientific framework for understanding my perceptions and behaviors. When I figured out I was autistic and then got officially diagnosed it was like I had been given the one missing piece of a mystery I’d been trying to solve for way too long – why am I different?

My research revealed that the professional who introduced the use of the puzzle piece, Gerald Gasson, a parent and board member for the National Autistic Society in London, had a somewhat different intention. An article on the site The Art of Autism  says, “The board [of The National Autistic Society] believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that autistic people suffer from their condition.”

NASlogo
Jeez, what a downer.


Parents often see it as an expression of how “puzzling” their child’s disorder is. One said, I believe my son is a mystery – still, after almost 26 years, and he is ‘missing’ certain understandings, skills and abilities as an ‘autistic person.’ He would tell you – as he told a group of volunteers at a training he helped me facilitate yesterday ‘I just don’t get certain things.’ Is it insulting to imply through imagery a particular truth about him?

Yikes. Yes – it is insulting if the focus of that symbol is on particular negative traits rather than positive or neutral ones. 

Another mother says, It’s a symbol – perhaps to some, it’s a ‘missing’ piece. I’d like to think our kiddos are the COMPLETING PIECE of the human puzzle.

One is focusing on the negative traits they see in their child and the other is romanticizing the autistic experience. However, it doesn’t help that there are many retroactive attempts to make the puzzle piece seem more positive, when it was initially meant to symbolize our “mysterious-ness” to neurotypicals who had not yet figured out how to communicate in our styles and truly hear us as a community. 

As an autistic woman named Jane Straus explains, “It is inaccurate, in its assumption of boy-blue, and its assumption that we are so impossible to understand. Those of us who can communicate in a way that normals understand are so simple and direct in what we say, that if they would just pay attention we would be not be a puzzle at all.”

Other criticisms from the adult neurodiversity community are valid as well:

  • The puzzle piece was popularized in America by the organization Autism Speaks, which despite hiring an all-star public relations team to change their original neurodiversity-negative outlook, still has no autistic individuals on their board of directors or leadership team. (There was one, but he became disgusted with the organizational perspective and left. He has not been replaced.) The majority of autistic adults believe that autism only speaks if someone with autism is doing the speaking and they have a great deal of animosity towards this mega-organization. 
  • The puzzle piece is a symbol based on a child’s toy. Now that we know that the majority of spectrum people alive today are over the age of 18, but missed or misdiagnosed in the past with multiple “mysterious” disorders, a childish symbol feels babyish and condescending to a group of self-determining, intelligent, and sophisticated people from all walks of life. We constantly have to fight the perception that autism is only a childhood disorder and being spoken to as if we are not adults in our day-to-day interactions. 
  • The puzzle piece was chosen by parents and organizations FOR us as a symbol to represent a health problem rather than being chosen BY us as a different way of being that is acceptable. In short, no one asked autistic people if this was a symbol that we wanted. Ours is a struggle to define ourselves and have the right to be self-determining. 

The problem with advancing the knowledge of autism and improving our outcomes isn’t a lack of research money, determined parents, public concern, autistic activists, or dedicated professionals trying to figure us out – it’s that we are already speaking out eloquently and frequently and we are being ignored, discounted, gaslighted, and contradicted by people who do not share our neurological perspective and have professional reputations to uphold. The natural consequence of this is that appropriate support services for adults have not materialized yet, because our opinions are not considered expert even though we live autism every day. 

We have yet to be considered authorities on the autistic experience because the cultural stigma around any sort of mental difference is still vast and insidious. 

This leads me to why the puzzle piece must be phased out eventually. As I mentioned, I personally chose to see it as a positive symbol as do many other spectrum people. This is perfectly alright. If you are an individual who creates artwork based on the puzzle piece, has a tattoo of one to show your support for us, or a clinician with puzzle artwork in your office – do not despair! You haven’t done anything wrong. Continue to enjoy this symbol. 

Let me make this crystal clear – every neurodiverse person is a fabulously unique individual and has the right to decide what representative symbol they want to adopt for themselves which they are most comfortable with. 

Yet a growing number of autistics are more comfortable with the color gold (for Au) and/or the multicolored infinity symbol to represent our burgeoning civil rights movement. As a group, we need a symbol that isn’t triggering for a large number of us. 

The puzzle piece with its current meaning about how confusing we are is distressing to people who’s biggest frustration is constant misunderstandings and miscommunications with a world that won’t meet us half-way in the first place. Understanding is a two-way street, and the majority neuro-culture puts all the responsibility and consequences for misunderstandings squarely on us. This is deeply problematic. 

We need to finally define ourselves, with or without the backing of professional organizations, because so much of the true autistic struggle is about being forced into becoming something we are not – someone publicly approved of and cooperative and compliant. But not ourselves

This is a terrible erasure. 

In America, there is a tendency for established systems and institutions to fail at self-examination, official apologies, and restitution for past harms. Part of that evolution is admitting to mistakes with public apologies that don’t have to be demanded, examining organizational perspectives against the consensus in the population being served, and phasing out symbols that carry historical baggage for that population.

I hope that any group, professional, non-profit, or organization which seeks to improve the lives of autistics and neurodiverse people is open to possible changes in the future and will work to center the voices and respect the feelings of spectrum people.