The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

State of Dis-Union: The NeuroDiversity Movement At A Crossroads And Why It Should Matter To Everyone

State of Dis-Union Graphic

I’m a recently diagnosed autistic man, and in the years since I wrote the article, Autistic Uprising: a Neurodivergent Rebellion of Hearts and Minds, I’ve invested my organization deeply in the service of engaging, equipping, and encouraging autistic and other neurodivergent persons, seeking through one-on-one life coaching transformative growth for those who seek help. The work has been rewarding, witnessing powerful stories of transformation for many autistic persons, their families, employers, and many others.

Still, as a trailblazer, ambassador of the Neurodiversity Movement, I’ve not forgotten for a moment why no gains matter if we do not see the day of true neurodiversity understanding, acceptance reached as a culture. Until we reach the break-point, the moment, all will be colored by struggle. To echo the closing words of my friend and colleague Steve Silberman, in his brilliant book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity; “There is much work to be done.”

Indeed, there is much work to be done before we can hope to claim the crown of equality, acceptance, understanding, and full engagement of all minds in the day of true neurodiversity. Yet, those of us who are called to labor forward in this movement cannot work blindly, willfully oblivious to the many troubles, challenges, and obstacles now in our way. We will need to face them, overcome them, or we will fail. And not just a few persons fail, but all of us – all of us together.

There are many sources available to be found regarding the Neurodiversity Movement, and I’ll spare readers the long walk through those particular woods. Still, perhaps a brief description of the Neurodiversity Movement would be helpful for those who may be unaware of its origins and gains as a social change movement.

Judy Singer was the first to coin the term “neurodiversity,” and since then, the move towards taking it from a philosophy to an actual instrument for social change has been unfolding steadily.

The Neurodiversity Movement is a progressive human rights initiative powered by neurodivergent persons and their true allies. It is based upon the core belief of all minds, autistic and otherwise at neuro-variance from other neuro-typical minds, having the right to cultural acceptance, dignity, fair opportunities in all aspects of human existence. In the shadow of significant civil rights movements throughout human history, it is both the subtle, hidden movement and the one encompassing all others. Why would a movement founded on the full acceptance of all human minds as relevant be the one true and defining human rights movement? The answer is quite simple.

If the balance of our culture reaches the point of acceptance of all human minds as equally valid, worthy of fully dignified inclusion, then it follows the Neurodiversity Movement in effect, pulls all other movements behind it in its powerful current. To embrace every mind, everywhere, and yet to deny full humanity, validity, rights to human beings in reflection of individual’s race, gender, ethnicity, sexuality, and other human attributes is profoundly illogical. Indeed, to have a mind, regardless of its neurological condition, is to be human. While undeniably, other creatures have brains, human beings have minds which are unique to us as creatures. The Neurodiversity Movement is a fully human movement.

Unfortunately, like its predecessor movements, the Neurodiversity Movement is now fragmented, grasping for positive forward momentum in the face of a great storm of challenges to its integrity, a unified vision for the future. And like social change, social justice movements before it, it is beset with enemies both externally and sadly, internally.

What follows is probably going to be painful to some. Some persons reading it will take these words very personally and may respond with malice. It’s unfortunate, but it’s also necessary to speak about these things. After all, the Neurodiversity Movement is not about any one person but rather encompasses each human person, and we must attempt to speak to the broader landscape of change and what affects it.

Some years ago, as I was driving my family through New Mexico towards the Sacramento Mountains, across the low hills south of Clovis, I nearly hit a tractor-trailer truck head-on. The situation was a split-second reaction, as I topped a small rise to see a huge pipe hauling truck in my lane coming straight at my car. With only single lanes, either way, the truck driver made the terrible decision to pass a line of at least ten other oil field trucks approaching the hill. My own choice was to hit him head-on in my rental car or drive off the side of the road. I chose the latter, and though rocks, dirt flew, people in the car yelled out in surprise and fear; I did what I had to do.

If the Neurodiversity Movement continues on its current trajectory, it is going to become unglued, lose its momentum, and relevancy for cultural change. And though I don’t particularly appreciate grabbing the wheel and would happily give it away, for the next few miles of words, I’m going to swerve out of the way of a potential disintegration of the movement and hopefully get our tribe, our allies, back on the roadway to change.

Yell if you need to, be angry if you must, but I’m going to take us into the gravel right now in hopes of dodging the oncoming hulk of setback for the Neurodiversity Movement. There will be rocks thrown, dented metal, scraped paint, but it is the only way forward. Get angry if you must, but understand this very clearly, autistic persons are my family, my tribe, and make no mistake, I will die for my tribe, as I’ve devoted myself to the success of the Neurodiversity Movement.

Person Staring Out At Sea

The Deficit Model of Autism.

Over the many decades since “Kanner’s syndrome” came into focus in the fields of psychiatry and medicine, there’s been one guiding theme dominating all understanding of autism and autistic persons. It is the singular unspoken rule which gives structure to virtually all cultural conversation on the understanding of neurodivergent persons. Until only very recently in all fields of training among those working in the mental health fields, medicine, and education, the prevalent view of autistic and other neurodivergent persons could be summed up in three words; “they are broken.”

To not understand this is to miss most of the trajectory of social change regarding true inclusivity of autistic and other neurodivergent persons. If the Neurodiversity Movement were a ship, then the deficit model of thought towards autism is a mighty gale blowing against it. The deficit model is still deeply woven into our cultural understanding of autism and many other neurological conditions. It is silent, yet it is the dominating perspective that holds millions in its thrall, from the psychiatrist to the frightened parents of a newly diagnosed young autistic child to the well-meaning but ignorant supporters of some large autism organizations.

It is an inherent bias dampening honest dialogue about the reality of life for autistic persons. This view of autism and autistic people quietly provides strength by the unintentional, sometimes intentional, misunderstanding of intellectual and developmental disabilities (IDD).

The truth is, there are a minority of autistic persons who are born with intellectual disabilities, just as there are some non-autistic persons who are diagnosed with IDD. However, there exists a vast number of persons who view all autistic persons as IDD. These same persons would not be able to grasp the truth of this even if their medical doctor or their therapist is autistic.

Deficit model reasoning is deep, and it is pervasive. This worldview doesn’t only rule in offices, but in living rooms as well. I remember a brief conversation once when I was on a phone call following the diagnosis of my oldest as being on the autism “spectrum,” and the man I was speaking to grew hushed, and then with a heavy, sincere voice told me his friend had one of those “retarded” kids with autism too.

Whether we wish to lay the blame for the cultural indoctrination of the deficit model at the feet of the medical, psychiatric community or our entertainment media, the reality is to embrace its wrongheadedness, is to be hobbled in our movement towards the goal of true engagement, inclusion in the day of neurodiversity acceptance. Anyone, in any aspect of their status in the conversation of the neurodiversity movement, who is willfully ignorant of the deficit model, is working against the movement, and they ought to be corrected with kindness – or pushed out of our way.

The Parents.

As a parent of three diagnosed autistic children, I have stood “in the shoes” of many of my fellow parents. Long before I was diagnosed as being on the spectrum myself, and many years before I had devoted myself to the study of autism and other neurological conditions, and back when I’d have laughed out loud at the current me working on my Doctoral degree to more fully serve the neurodivergent community, I stood buffeted by the winds of fear of the unknown.

The winds of confusion, fear came from every direction and felt genuinely overwhelming. I understand it, have withstood it, but to be ignorant of it, either by lack of knowledge or by trying to be comfortably, willfully ignorant, is to allow the storm to dominate the narrative of neurodiversity understanding.

Parents of autistic persons, both neurotypical and autistic themselves, are in a critical position to influence the discussion, the cultural momentum of the neurodiversity movement. As the saying goes, they have “skin in the game,” and because they are so positioned, vested in the outcome of the story, they are also prime targets of the stewards, the systemic keepers of Big Money.

Autism Inc.

Big Money.

It would be a useless venture to try and address the systemic impact of the power of money, greed on the autistic community, and the Neurodiversity Movement. To do so would be akin to pointing to a cup of water in an ocean of money. Suffice it to say, at every moment, at every level, the lure, power of the dollar in the conversation about neurodiversity is mind-boggling, pervasive, and powerful.

There are many people who have secured solid income, even become wealthy from stoking the fires of the autism industry, and they do not intend to allow such mere mortals as we to change the flow of money. From therapists, behaviorist practitioners to CEOs of large autism organizations, the money is the heartbeat of their participation in the world of autism, autistic people.

While today a corporate CEO may be interested in engaging in discussion about fostering inclusivity, neurodiversity in the workplace, they are also restrained to one degree or another by the silent leash of Big Money stewards in the autism industry.

The power, the influence of those who’ve become prosperous by shutting down the “uppity” autistic community, are not going to let go of their income stream easily. Any hope for stepping around them and course-correcting those they influence will come from those who have nothing to lose and do not have any care of gain from their polluted money game.

Those who make a prosperous living off of the backs of autistic persons have built a mighty dam with the control of the dialogue, and they are not about to let us get near it, “monkey” with the machinery they’ve constructed to power their incomes. Of course, we’re not going to go near it. We are going to drop a Dam Buster Bomb on it from 50,000 feet in the air. Boom, and let the waters run free!

Finally, I think it only fair to say, please do not hear what I am not saying. Until we arrive in something like a Star Trek universe, we all live in a world where currency matters. I am not talking about denying anyone an adequate income for their work but rather pointing to greed and to the systemic corruption it engenders. There are too many individuals, large organizations built with the machinations of sustainability in mind, and not the good kind of sustainability either.

As for my organization, Life Guides for Autistics | NeuroGuides, I’ll state again what I’ve said many times before. My hope is to grow in order to help as many as possible, be a lever for changing the narrative for neurodivergent persons worldwide, ushering in the neurodiversity paradigm, and then fade into oblivion. In an interview, someone asked me recently, “So, you plan to become obsolescent?” Yes, that sums it up nicely. Now, which of you autism industry executives making six figures plus will join me? OK, not all at once now. No crowding, please!

“Fair Weather” Allies.

The fear of loss, or of not gaining enough of one of a myriad of things, money, power, influence, and so on, is an unnecessary weight around the neck of too many allies of neurodivergent persons and the neurodiversity movement. Many who would otherwise be allies have much to lose, far more to lose than gain at this hour of the neurodiversity movement. It can certainly be expected, and when we’ve come close to arriving at the day of true inclusivity and acceptance of all minds, there will be more than a few pretenders who will say, “I’ve been with you all along.” They haven’t, and they’ll be known in the end for their lack of scars, both visible and those they’ve kept hidden.

The number of persons, organizations who would call themselves “friends” of the neurodiversity movement are many. Too many are currently busy making it sound as if they are sailing alongside the neurodiversity movement. The truth is, they are not “in it” to see us succeed, and they are in this to win something for themselves, whatever that may be.

Too many individuals and organizations are becoming skilled at appropriating the language of the neurodiversity movement. That sounded too nice, far too pleasant. They are stealing our language, expressions of a people group they do not belong to. They are, in a sense, “black facing” and doing it in an offensive, negatively intersectional way towards autistic and other discriminated against persons.

Far too often, we autistic persons and our true allies are simply letting them do it, even applauding them as they do it. I’ve sometimes found myself in quiet dismay on a social media site such as LinkedIn when autistic persons or their deemed allies “like” or applaud a posting which sounds on its surface like a complement to the neurodiversity movement, but when you look under the surface of who the poster is you find something rotten, stinking there. Eugenics, much?

It’s time for neurodivergent persons and their allies to become educated, do their research, and when “fair weather” allies of the autistic community put on their fake masks, we tear it off them, and they’re exposed for what they actually stand for. We, autistic persons, are not stupid, and it’s time we stopped with the “baby food” posturing and start biting where it counts.

The Seduced.

One of the most difficult challenges to the Neurodiversity Movement is sometimes neurodivergent people themselves. There are a significant number of autistic persons who perhaps unknowingly are sabotaging the very movement which aims to give them all a bright future of inclusivity. Now, before you answer and say autistic people would never knowingly sabotage their own future, undermine their own people group, I will say historically, there is nothing new to see here. It happens all the time.

For example, in the genocidal campaign of the taming of the West, where the United States attempted to eradicate Native American peoples, there were more than a few “Scouts” who worked with the US Army to locate and often personally helped massacre other tribes. Historically speaking, anytime individuals or groups become blind to the larger narrative and needs of others, they are ripe to be recruited, subtly or openly by the status quo.

In one of my favorite works of fantasy, from the mind and heart of the genius J.R.R. Tolkien, the representatives of the many races of Middle Earth are called to a secret council hosted by the wise and fierce Elf-Lord Elrond. He, and others, labor to convince the others who would have the power of the enemy for themselves; each was tied to the fate of the other races. If any lost, it would be a loss for all and the end of all they knew. Am I suggesting the failure of the Neurodiversity Movement would be “the end” of our cultural future? No, I don’t think so. Then again, maybe?

Infighting.

In any social change, social justice, or civil rights upheaval, there will always be people who have felt the constant sting of being denied validity, traumatized, and abused by the keepers of the status quo. Historically speaking, autistic and other neurodivergent persons have always been a part of the landscape of humanity. Still, they’ve lived quietly in the shadows of time, and when pulled into the spotlight, have suffered, been taken advantage of. One has only to look to Tesla being cheated out of his inventions, or Einstein, who said if he’d known what they were going to do with his work on the atom, he’d have become a watchmaker instead.

I know of a brilliant, gifted autistic woman who dedicated years to building a neurodiversity and inclusivity hiring and training program in a Fortune 500 company, only to have her work taken from her, used by a neurotypical led team, claimed as their own. It is wrong, and it is sadly prevalent today.

People who have been bullied, abused by a culture often have no “sense of self” when provided the opportunity to speak out, engage in civil discourse, build each other up in considering a growing hope for a better future. Indeed, they will often engage in bitter infighting, turning against one another instead of seeking opportunities to engage, encourage each other. Sadly, they act towards one another as they’ve been treated by the oppressing majority.

This infighting among autistic persons is happening at an alarming, increasing rate in many of the social media and other forums used by the engineers, leaders of the Neurodiversity Movement. It is not enough to insist it simply stop, as we are called to examine the roots of the need for conflict among those who ought to be joined together, marching forward rather than going at each other publicly.

In my time on Earth, I’ve never known people who are, at heart, so authentic, so deeply emotive in their actions as autistic persons. We need to find ways to take pause, deeply consider the hurts of others before we inflict further hurts on an already deeply wounded group of human beings.

Not only is it the right thing to do, not only will it provide renewed strength, energy, and momentum to the Neurodiversity Movement, but it will set us together against the will of the system designed to keep us frozen in place.

A Sea-Change Moment.

The moment any social change movement begins to make footfalls in the collective consciousness of a culture, it forms what is sometimes called a “sea-change” moment. A year ago, if I were asked, I would have agreed we were about to witness a Sea Change Moment in our culture with the Neurodiversity Movement, but now I think we’re going to have to go a bit further in, higher up before we see the sea-change moment. I’m sometimes described as a fiercely hopeful person, but in all respect for the movement, I’m going to tell you we’re coming to a standstill, in danger of being pushed backward.

What are you willing to do to help us regain momentum? Do you find something of yourself described above? Do not despair, for we can heal, find forgiveness, find our momentum once again. It is, however, going to require honest, authentic engagement, dialogue, and much more sacrifice on the parts of many.

I’m with each of you, and you each are important, dear to me. Neurodivergent persons, true allies, please join hands, lock arms, lift each other. If we need to drag some of our family, our tribe, into the day of true neurodiversity, then so be it. But we’ll do it together.

We’ll get there together – united, weird, and wonderful fully human persons. Onward, dear ones.

With much love and respect for neurodivergent people, and their true allies everywhere, those who have gone before are with us now and those yet to come.

~ Fulcrum

NeuroGuides

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