Susan Senator

Any social movement ultimately opens up to new discourse, different points of view. Autism is no exception. We’ve had the anti-vaccine groups vs. the medical/pharmaceutical/scientific institutions. We’ve had identity-first vs. person-first debate. We’ve had the Autism Speaks Awareness campaigns vs. the ASAN (Autistic Self-Advocacy Network) nothing-about-us-without-us/acceptance, not awareness, campaigns. And I believe each stage in the modern history of autism (starting in 1981, when Lorna Wing discovered Hans Asperger’s work and came up with the term Autism Spectrum Disorder), is important and must be faced courageously and thoughtfully. Wing’s contribution ultimately broadened the diagnosis to include many many people who — Steven Silberman points out — were otherwise marginalized in institutions as psychotic or intellectually disabled or criminal; or marginalized as weird, odd, crazy, nerdy, unlovable.

As ugly as these rifts have become, each phase, is important in the progression of autism as an important social movement.

The current rift is a new iteration of the AS-Self-Advocates division. The rift began with AS (Autism Speaks) using stories of suffering on the part of autism families to raise mainstream awareness of what families need.  The tension came from the AS emphasis on Autism-As-Child-Kidnapper. The positive sides of autism were not a factor, the idea of autism as identity was not actually known. I believe that Autism Speaks acted in the best interests of the cause of putting autism on the map. No one — other than autistics themselves, autism families, a handful of researchers — was thinking about autism, period, before AS came along with its empty stroller ads or Autism Everyday video. I give AS the benefit of the doubt, considering the pervasive view then, the ends-justify-the-means battle mode.

Before long, self-advocates who could communicate protested this attitude, rightly so, because it is potentially damaging to autistic people. The AS-type of autism hatred was a direct attack on who the autistic self-advocates were. This makes sense: if you harp on extreme and negative conditions of a disorder, then all people will want to do is eradicate it like cancer. And for a small, damaged minority, this view may translate to justifying violence towards autistic people (never ever justified.) Or, much more likely, for well-intentioned but misguided parents, questionable or even harmful, unscientific “cures” or treatments, like the use of chelation (which killed one child), or giving a child bleach enemas, or the drug Lupron that staves off physical development in the child.

These are horrible approaches, unjustifiable. But let me ask a question, without condoning anything harmful to a child:  Might there indeed be something environmental harming our children? This is a question worth asking, and it is a thread that runs through the anti-vax, anti-autism groups. That, plus the GI connection to some autistic-like symptoms — these came in part from the anti-autism group. Formerly discredited, now many doctors urge looking at intestinal issues and physical causes for behavior problems. Furthermore, there are immune-compromised children who cannot be vaccinated but should not be ostracized for their decision.

The new issue is a further evolution, and the term “Inspiration Porn” sums it up. We now have autistics who can communicate decrying the parent bloggers who appropriate their autistic child’s life story and use it as a way to promote themselves, or to get sympathy from other parents and groups. I’ve read tweets that express outrage at the pain parents describe of dealing with autism. The mostly legitimate fears for the parents’ own children get translated to callous, clueless unjustified whining.

This is a bloody split, because it gets right to people’s hearts. If you have a child  — or an adult loved one with autism who cannot communicate, is self-injurious, acts out, destroys things, runs away — you may have a very difficult time even believing that the self-advocates understand your child’s — and your — struggles. And the name-calling, the put-down of “Inspiration Porn” doesn’t help. The challenging behaviors and episodes are very real. Yet they are not the whole picture of autism by any stretch. And yet again they may be a very large picture of some families’ lives. Mine included, at several points. No, we don’t want society thinking Autism = Violent People. But we do want help for those families who are living with it. Yes. We. Do. We just need to find balance in how we talk about it.

There are self-advocates, too, who explain much more fairly and accurately the harms of ableism, like this one. I’ve learned about ableism and the ways I’m likely guilty of it, from the self-advocates like this one and from ASAN. I’ve asked myself what I should do to change, if indeed I am guilty of Inspiration Porn myself. The ableists see everything through the Poor Autistic filter. They want to force the mainstream, the neuro-typical. They see autism as inferior to non-autism.  Hugely important for society to see this, the wrong of it, the harm, the psychological fascism involved.

And so: there are no definitive answers here. I understand all the sides. I have friends in all camps. I’ve also seen my Nat evolve and my own perceptions of him have radically changed over the years. I also believe that things are not clearly sides at all, that this is one big Spectrum spectrum. There are grays here. There is an entire rainbow of viewpoints. The non-negotiables, of course, is inflicting harm on others. Or using your child without considering his/her feelings about what you write. Or vicious attacks on honest, worthy, awareness-raising posts. Each part has for better or worse contributed to putting autism on the public’s radar. Each group can and should learn from the other.  Let’s hope that that radar remains focused on resources and accommodations and scientific research that helps autistics realize their potential, and helps families connect with — and help, yes, help — their differently-wired loved ones.  Only with balance, bona fide science, courageous open-mindedness, and compassion for all of us will we move forward, faction-free.