Why the Autism "Community" Can’t Get Along

The idea of a “community” in autism activism is a farce. This is because many who are deemed to be part of this community have opposing goals. From my experience, three completely different groups exist. Though there is crossover between some of the groups, the ends are polarized and cannot unite. Below is my perception of the groups, though more groups might exist that are less well-known.

Vaccine-injury Conspiracists

This group believes that autism is a preventable injury. Though no science supports this theory, they hold on to bogus research claims and snake oil. The bulk of this group believes that the pharmaceutical industry has created dangerous vaccines as a way to make more profit (by using cheaper but harmful additives and ingredients or creating unnecessary vaccinations). Others take the theory a little further and believe that the industry is purposefully poisoning the people. Regardless of how extreme, this group tends to believe in pseudoscience and promotes sometimes dangerous “snake-oil” treatments in attempt to cure autism. Groups such as Talk About Curing Autism and Age of Autism are examples of this group’s mentality.

Eugenicists

This group consists of those who seek to eradicate the possibility of new autism births. They seek to find a prenatal test that can identify the likelihood of having a child on the autism spectrum so that families may be given the opportunity to terminate an at-risk pregnancy. They also seek to find ways to keep the so-called disorder from happening – presuming autism is a preventable defect (think Fetal Alcohol Syndrome). They hope to find a “cure” for those they believe are “suffering with autism.” They throw millions of dollars into “awareness campaigns” that stigmatize those who are on the spectrum. They also fund research that might further their goals. A good example of this group is Autism Speaks.

Neurodiverse

This is where the self-advocates, often identifying as autistic, tend to flourish. This group believes that disability is natural and that autism is a neurological difference and a variant of human diversity. This group vehemently opposes that autism should be prevented or cured. Led by disability activists, this marginalized group has been compared to the civil rights movements of the past. Their motto is “Nothing about us, without us!” This group promotes “acceptance” rather than awareness. Most of this group consists of those identifying as autistic. In the recent past, however, many non-autistic (aka allistic) allies have joined in support of the neurodiverse message. This group has been notoriously labeled by other groups as “too angry.” Others have attempted to discredit the movement by insinuating the members are not truly disabled and are NLMC (not like my child). A couple examples of this movement are the Autistic Self Advocacy Network and the Autism Women’s Network.

You may already be able to discern why these groups cannot converge. Here are a few ways they do and do not.

Convergence

Eugenicists and Conspiracists
These two groups agree that autism is potentially preventable and treatable. Both tend to infantilize autism as believing it only affects children (somehow magically disappearing in adulthood).

Neurodiverse and Eugenicists
There is very little agreement between these two groups. Both groups do support scientific research about autism but the support for research focus is very different.

Conspiracists and Neurodiverse
I am at a loss to find any common ground with these two groups.

Divergence

Eugenicists vs. Conspiracists
The eugenicists represent legitimate (albeit ethically questionable) science. The conspiracists do not.

Eugenicists vs. Neurodiverse
The neurodiverse are strongly against cures and prevention for autism and consider autism a natural human variant. The eugenicists are strongly for cures and prevention and consider autism a disease or affliction. Eugenicists seek social awareness while the neurodiverse seek social acceptance.

Neurodiverse vs. Conspiracists
Conspiracists believe that all cases of autism are preventable injury and fight to stop this so-called injury. They promote treatments that are often harmful and dangerous. Neurodiverse do not support questionable treatments for autism nor do they support the idea that autism is caused by a preventable injury.

It is probably not so hard to see why there is little community behavior between these groups. It is unrealistic to believe that they will ever converge because they simply do not share the same goals. Community generally refers to common ground. It is not only unrealistic to infer we should all “just get along,” it is offensive. What most really mean by that statement is that the marginalized group should be silenced.
I won’t deny that there are people who do not fit neatly into any of the three groups. Often we hear those who say they support the neurodiverse message but still seek a cure for some. These statements are in disharmony and make little sense. Realistically, these people are supporters of the eugenics or conspiracists groups but do not want to identify as such. You simply cannot be for finding a cure for autism and at the same time believe autism is a natural part of human diversity.
For those who read my blog, it is probably easy to see that I am an ally to the neurodiversity movement. My belief is that those who are labeled – are living with a disability, should be calling the shots. I believe that people on the spectrum should have a voice no matter whether their voice is through augmentative communication or their vocal chords. I cannot possibly imagine that I, an onlooker, should have more say than this marginalized group of people. I don’t get to determine how they should think and feel anymore then they do for me. This is their battle and I proudly stand beside them in support. As a parent, I stand beside my autistic son and let him be my guide.
Advertisements

My April Vow

This April, I vow not to make Autism Awareness about me. I vow instead to make Autism Acceptance about Autistics, like my son. 

I am allistic, a parent, an observer, a bystander. 

I will not “light it up blue.”
I will not promote “puzzle pieces.”

I will let the people who wear the autistic label define their disability. Nothing about them without them.

Let April be about truly supporting people with disabilities instead of advocating for the families – the parents. 

This has never really been about me. 

Join me and take the pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. 
http://www.autismacceptancemonth.com/pledge/

Return of the Salem Witch Hunt

Mass Hysteria: Anyone with Mental
Health Issues is a Dangerous Killer

I couldn’t help this week but to draw a parallel to the witch trials with the mass hysteria caused by the irresponsible and unethical media. The people are now shouting from their social media rooftops – “hang them – they are killers!” If that were not enough, hate mongers posing as religious zealots are lighting other’s torches preparing for the hunt.

Much like the days of the Salem witch trials, people want a solution to end the wickedness (violence) society has brought upon itself. And our sensationalized media has been delivering by offering a scapegoat – people with developmental disabilities and mental health disorders. Let the burning and hanging begin.

No amount of real data can deter these convinced witch hunters. No, anecdotes and speculation are all the proof they need. “My friend’s sister’s cousin works with these people and she says they are just dangerous.” So it must be true. And then of course, some Bloggers also chime in with their pained stories of how hard it is to parent these awful children – “don’t you feel sorry for MEEEEEEEEEE?” I mean, if it’s on the internet, it must be true, right?

(The answer would be no. No, it’s not true. Data doesn’t lie – but people do.)

Ironically, those with mental health and other developmental disabilities are less likely to commit violent crimes than typical folks. But you’ve heard this before. Yeah, I know – your BFF’s dogsitter’s sister-in-law said….

Some statistics from the American Psychological Association regarding the mental health of the United States:

  • Published studies report that about 25 percent of all U.S. adults have a mental illness and that nearly 50 percent of U.S. adults will develop at least one mental illness during their lifetime. (CDC)

That’s a lot of people who are potential killers. And well, 50% pretty much means either you or someone in your home will eventually have a diagnosable mental health disorder if not already. That number doesn’t account for the developmental disabilities also being accused. Better take cover or warn your spouse – you might be living with the Devil’s Spawn!!!

In all seriousness, this hysteria must stop. Remember what happened to a society who bought into the witch trials? It is happening again for people with disabilities. Real people are being targeted this week. They are being told they are killers, and worse – that they should be killed. Children are shouting horrible things to their disabled peers in school. People in store check out lines are viciously discussing how we need to lock them all up.

Each one of us is susceptible to being labeled with a mental health disorder in our lifetime. That does not make us more likely to commit premeditated murder. In fact, it makes us all the more likely to become victims by the hand of an otherwise sane individual.

This is not to say that mental health should be ignored. Far from it. Our society is less likely to seek help for mental health issues because of the stigma associated with a diagnosis. That needs to change. People should not fear seeking help from a psychologist anymore than they fear obtaining an eyeglass prescription from an optometrist. As the statistics show, half of us will need to seek help for our mental health at some point in our lives. HALF. Though I’d guess more than half need eye correction, that’s still a lot of people.

Take a deep breath. Clear your mind. We don’t need to figure out why this happened. We do, however, need to take active measures to stop it from happening again. But that doesn’t start with creating mental health concentration camps or institutionalizing people based on labels. It starts by changing the way we as a society tolerate violence for entertainment. It starts by rethinking weapons laws and accessibility. It starts by realizing we are all human and not infallible. And it starts by letting the families in Connecticut grieve without fear that their loss started the biggest witch hunt since 1692.

I Stand With Henry

On the tails of my last entry – how functioning labels are harmful, comes young nonverbal autistic, Henry. Henry wants to be treated like a human being. He wants people to stop talking in front of him – about him – like he’s not there. He wants to go to his neighborhood school. Not in some self contained segregated classroom. He is smart and wants to be treated with dignity and respect. Henry is not an anomaly and we must stop thinking that he is. Many autistic people with communication differences are labeled with low IQ and lack of potential –  inappropriately so. We must STOP. NOW.

I stand with Henry because every student and every human should be afforded equal rights and respect no matter. Only when society stops sorting and valuing people based on labels will society truly be free.