The Real Voice of Autism

A speech by an autistic

What is autism?

Once I say I am “autistic,” I understand I will never be perceived the same again. And that is both my sword to bear and light to share.

There is no way to fully understand autism, unless you are autistic. But there are numerous ways to raise your personal awareness. Particularly useful are firsthand accounts by actual autistics and historical perspectives by respected journalists. While it is hard to pin down the term ‘autism’ in a short interval of time, I can tell you what the average autistic is not. They are not ‘Rain Man,’ and they are not the stereotypes perpetuated in the media. We are typically, in my experience, caring, loving human beings with great potential. And, like all individuals, given the proper support systems and acceptance, we can excel to great heights; and like all people, given repeated oppression and bullying, we can plunder to the depths of self-injury and self-persecution. Today, autism is represented in all shapes and sizes, all ages and creeds, all genders; we include LGBQ, African Americans, the physically disabled, and other marginalized minorities. We include the unemployed and the professional with multiple  degrees. We include doctors, lawyers, and teachers. We include experts in technology and literature.

If we are different, then we are different in the way we process the world, including information and encounters with others. We are often visual thinkers. Typically, with heightened sensory systems and the ability to conceptualize and link facts at rapid speed. But, overall, we share more commonalities than differences with the average citizen. I myself have a vast imagination, a powerful force to love and empathize, a strong need to protect the voiceless, and a tendency to think in complexities, and present as intense and honest. There are many autistics like myself. And there are many that are not. We vary in our interests and values. We vary in our struggles and triumphs.

So then, what is the defining factor of autism? If we are so much like our neighbor, then what is it that sets us apart? In short, it is our neurological makeup—the makings of our brain—the way we interpret and filter stimuli. The way we logically approach situations. And the way in which we sometimes forget the majority of the populations’ brains don’t function like ours.

Today, I am one voice of autism standing before you. To date there has been a lack of autistic voices in the representation of our people. In truth there is an ongoing exploitation of us to attract viewership and consumers, including organizations that know little-to-nothing about autism, that charge top dollar, ranging in the thousands, to teach about autism. We, as an autistic people, are being taken advantage of in the media and by money-hungry big business and entrepreneurs. We are the victims of yellow journalism; vacuous articles unsubstantiated by careless facts and filled with escalated jargon, spoon-fed to an unsuspecting readership. Studies and statistics regurgitated that often have their roots in (admittedly) biased studies and limited control groups; absent are the representation of the growing late-age diagnosed and female autistics. Increasing are the glooming statistics that are not fact-checked and paint a doomsday predicament, generally without solutions or direction.

And, yes, incase you are wondering, there are far more females on the autism spectrum than first recognized. For the most part, we go undetected as children and in adulthood, as we are good at fitting in and “pretending” to be “normal,” to avoid ridicule and persecution. Something sadly, that every autistic I have met has encountered–the persecution. As you might well know, it is common for autistics to be tagged as “lacking empathy“ and “absent of imagination.” Nothing could be further from the truth. We present our empathy differently. We have keen imagination. Furthermore, we are pinned as loners and unable to make friends. We are depicted as individuals who do not make eye contact and clumsily move about the world in our oddities and frailties. We are linked to fear: to murders, to criminals, to cancer. We are coined “unable to hold down a job,” “tech geeks,” and “unstable.”

As an autistic, I am here to say the tides have changed. We, as a collective, will no longer be cornered into less than and not enough. We will no longer accept others tainted and biased tellings and teaching about who we are. We are not a collective “disorder,” nor an inferior race that needs a cure. We have been here for centuries and did not just come into existence—a normal child turned abnormal.

In corresponding with over 5,000 autistic adults worldwide, and having had, with great zealous, read thousands of pages related to autism, I have taken in the outdated classifications and definitions of autism, the fear-mongering, and spreading of stereotypes.

A primary agreed upon perception of autism has its roots in the DSM. It is commonplace for journalist and mental health professionals to refer to the DSM-V, The Diagnostic and Statistical Manual of Mental Disorders (DSM), in referencing autism, particularly recently, as the term Asperger’s Syndrome has been placed under the broader classification of ‘Autism Spectrum Disorders.’ It is important to note, in considering the concept of mental disorder, that the Diagnostic Manual has a natural bias—a bias that is influenced by deep pockets and special interest groups, a bias most prevalent in the profit goals of health insurance agencies and pharmaceutical companies, and a bias further inflated by the educational lobbyists working to fund higher-education research projects. A bias stemmed also from cultural influences and human nature—the inability to remove the definition of “disorder” from a personal value judgment based on cultural and individualized perception.

Despite the natural biases, today’s revised DSM, the DSM-V, is largely referenced as the bible of psychiatry and psychology. But we must remember, the DSM-V is not a neutral entity with the interest of mental health clients and patients in mind. In strong contrast, the DSM-V is dependent upon outside influencers with vast economic and political power. It is a ‘bible’ with some arguably practical and applicable data, set in a broth of bleeding conjecture and greed.

Here is lesser-known information about the DSM:

“The origins of the DSM date back to 1840 — when the government wanted to collect data on mental illness. The term “idiocy/insanity” appeared in that year’s census. The manual went through 10 editions until 1942.”

(source: http://psychcentral.com/blog/archives/2011/07/02/how-the-dsm-developed-what-you-might-not-know/)

“Although widely used, the DSM has come in for fierce criticism, with many commentators believing it to be conceptually flawed in a variety of ways.”

“ . . . the DSM is theory-laden” and has been “shaped by social and financial factors. “

“The DSM definition of mental disorder was born out of the 1970s debates over homosexuality. In the DSM-II (APA, 1968), until 1973 homosexuality was listed as a mental disorder . . . “

“The problem with the DSM definition (of mental disorder) is that the genetic bases of some conditions that we would normally class as diseases may confer an evolutionary advantage (Wilson, 1993: 45 in reprint).”

“The fact that third-party payers only reimburse treatment for patients with a DSM diagnosis provides an incentive for psychiatrists and patients to lobby for new disorders to be included in the DSM. When such lobbying is successful, new diagnoses come to be included in the DSM as a direct result of insurance pressures.”

“Once a diagnosis is included in the DSM, the diagnostic criteria may be altered between editions so that more or fewer patients fall into the category.”

Source: What is wrong with the DSM? Rachel Cooper, Lancaster University http://journals.sagepub.com/doi/pdf/10.1177/0957154X04039343

Part of the DSM-V Autism Spectrum Disorders (ASD) states:

• Persistent deficits in social communication and social interaction across multiple contexts (e.g., social nuances of language and facial expressions)
• Restricted, repetitive patterns of behavior, interests, or activities (e.g., hand flapping, insistence on sameness and predictable routine)

(Source: Autism Speaks)

But what is a deficit by definition? Who is to determine the right way of communicating? What is such determination based on? I ask what is wrong with hand flapping and with a need for predictable routine? If, by definition, an autistic person is impaired socially and occupationally, can this impairment be eradicated by proper supports and acceptance? If so, is the eradicated impairment indication of an eradicated disorder? Case in point, since I have developed meaningful relationships and success in my chosen vocations, have I subsequently outgrown my disorder? Am I now disorder-free? Am I now non-autistic? Has my brain somehow been altered?

And what of all the other traits? The common traits of autistics the DSM-V has overlooked and not classified, (perhaps in attempt to appease special interest groups, e.g., insurance companies), such as the list of character traits thousands identify with worldwide? https://everydayautistic.wordpress.com/2016/05/02/females-with-aspergers-syndrome-checklist-by-samantha-craft/

Is autism a disorder? In my anecdotal experience, a large proportion of the autism community would proudly say “no.” In my opinion, it is at its worse a neurological condition and at its best, simply a different way of processing the world. Does autism and/or Asperger’s Syndrome come with hindrances and challenges that justify services and render some ‘disabled.’ Indeed. This is not to be understated. There is a growing need for accessible and affordable support services and resources. Parents and individuals are struggling. And awareness has the potential to bring much-needed support.

Discussing the subject of autism, sometimes leads to more questions than answers. But questions are good. Questions are necessary. In closing, I ask you to remember the voice of autistics. I ask you to erase your stereotypical notions. I ask you to remember this teacher standing here, this mother of three, this author, this community manager, this leader, this singular voice that has an army of voices behind her. We are not the autistic you have been shown. We are your neighbors, your committee members, your faith house friends, your organizational volunteers. And I ask you to leave with this singular question: Who should define autism? Shall it be special interest groups? Journalists? Self-proclaimed experts exploiting a people for profit? Or should the voice of autism come from actual autistics, those who live and breathe it daily?

Samantha is the author of Everyday Aspergers and the founder of Spectrum Suite LLC This is an excerpt from her speech to be presented at her local Rotary Club and other organizations. Please do not duplicate the information without explicit permission from the author at info@myspectrumsuite.com Portions may be quoted with credit given to Samantha Craft, author of Everyday Aspergers and CEO of Spectrum Suite LLC.