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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3 thoughts on “Why the Autism "Community" Can’t Get Along

  1. As a therapist who specializes in Asperger's and autism, your post is a good one. Many of my Asperger's patients like to consider themselves Neurodiverse, and like to think they are superior. In some ways they are, but the danger is in not improving things that can limit progress in life.

    I work with looking at the positives of the condition, and using them, while working to limit the negatives. Denial of negatives, or blaming some conspiracy, will not help your child in life.

    Keep using the positives, and work to reduce negatives, and live life the best you can.

  2. Thanks for the comment. I have not had the experience that the Neurodiverse feel superior, in any way. What I have found more often is that they are struggling for equality in this world. Thanks again for your input.

  3. Amy,
    How well thought out your “Autism Community Blog” read. I must confess that I have not spent time in educating myself on Autism. Whish is so wrong, because it does have an effect on so many people. (& really Just one is enough!)
    I think that your reasoning between the different/opposing groups is sound with the neodiverse being the most reasonable, workable and HUMAN.
    So often in trying to find reasons “why” in trying to prevent or “cure” we neglect the opportunities to learn to live in the truest sense of the word “Live”. Everyone is different. God created us that way . UNIQUE.
    So,can studying vaccines,looking for “triggers” as it were, is this wrong?
    I think not.
    -(although to test a child in its mothers womb , and decide then, we are somehow doing the world a favor by NOT letting this child be born….. I draw a line).-
    Research in its self is not wrong but it should be secondary to learning to help the children and the adults of the world that deal daily with whatever their form of autism allows them to face the world with daily. Whether a person is made Unique by the fact that they have what might be considered “a gift”, or “a disability”, it really makes no difference . Our job as parents, educators, family and friends is to help that human being be the best that they can be , let them know that they are loved for themselves and not defined by things we do not yet,fully, or may never understand.
    God Bless you Amy.

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