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.
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This Raving Mother from Hell celebrates 1000 Ausome Things #AutismPositivity2013

My thirteen year old ausome son…

  • knows more about plant and animal biology than most college students
  • is more protective of earth’s precious plants and animals than most conservationists
  • takes more seriously performing in a play or concert than most adults
  • is more decent to humankind than it often deserves

I hope someday to be half the amazing person he is.

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/

Discrimination

“to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and that special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

The above is a powerful selection from Part B of the Individuals with Disabilities Education Act (IDEA), a federal law that applies to all public schools in the United States who receive federal funding.

“The School Board of Hillsborough County, Florida, does not discriminate on the basis of race, color, sex, religion, national origin, marital status, disability, or age in its programs, services, activities or in its hiring and employment practices. School Board Policy 1122 ensures equal opportunity for all in its personnel policies and practices” (emphasis added).

The above is an excerpt from the Hillsborough County, Florida school district website. It is, in fact, listed as a disclosure on the homepage of their website, found here.
Henry Frost

“I am Henry, a self advocate. I want the same rights as everyone.
Today I read about Martin Luther King.
The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.
I am a person.
I want these rights.
I want to go to school in my neighborhood.
Why can’t I”?

The above is a plea from Henry, a thirteen year old autistic self advocate. Henry is a resident of the Hillsborough County school district. Henry uses assistive communication software on his tablet computer to communicate. He also has hearing loss and relies on special hearing-aids.
As you likely realize from Henry’s plea, the Hillsborough County school district has refused to allow Henry access to the least restrictive environment. In fact, Henry isn’t even allowed to go to the same school his neuro-typical sisters attended (edited 2:55pm) – a school which is across the street from his family home. Hillborough County has decided unilaterally that Henry isn’t capable enough to attend their educational program.
Henry’s school district has, to date, not held an appropriate IEP meeting. Instead, they have created an internal “good old boy” court in which Henry cannot give input and which his parents are not allowed meaningfully participation. At Henry’s last IEP meeting there were 18 district staff members present.(edited 2:55pm) Henry and his family were put on trial in attempt to convince the school of Henry’s rights. Instead of allowing the IEP “team” to discuss the goals and accommodations for his educational plan, the school unilaterally determined Henry cannot attend without passing their proprietary “tests” to prove he can cope. Tests of these sorts are not legal.
“Wait. What,” you say? Isn’t Hillsborough County discriminating and breaking the law? How can a school discriminate like this and not be sanctioned? Yes they are discriminating and the reason is simple.
Every single case of discrimination is processed separately through expensive and stressful due process. Families must hire attorneys at great costs and file discrimination suits. Schools routinely retain attorneys for all their legal troubles. They have lawyers at their beckoned call who stand ready to defend. Schools like Hillsborough County know they have the upper hand. They know that resources are scarce for most of the families they discriminate against. They gamble on the fact that most families do not know the law or do not have the financial or legal resources to fight back. The system is broken.
What Hillsborough County is doing is not uncommon. This is a systemic problem in the United States. Schools know the law better than the families. School districts have legal know-how to continually break the law with little worry. The students who suffer are collateral damage so that the schools can keep the status-quo; that is, to only properly educate the students who are easy – the typical, average student.
What Hillsborough County school district fails to realize, however, is that Henry and his family are not alone. Thousands have taken to blogging and social media to make sure this story is heard. It is only a matter of time before Hillsborough County school district begins to feel the sting of their actions.
I stand with Henry. Won’t you?
http://youtu.be/UuFp5O8Pzq0

Edited 2:55pm– originally stated a regular education teacher was not present. This may be the case but has not been confirmed. & The student’s sisters no longer attend the same school building as they now attend high school which is a different building.

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.