Harsh lights glared down at us, shattering against the white walls. The chemically-cleaned toys slashed their bright colors across the sterile surroundings. Blood chugged through my head like one of the trains my son loved—not the happy Thomas the Tank Engine, but the desperate, hurrying, careless fellow that always managed to jump his track. The nurse tried to prepare us, but we were exhausted after nearly four hours of tests. Her bracing words just couldn’t penetrate our malaise. The doctor came in with his file-folder, the metal clips standing on end as he added another sheet of paper to the collection. My mind begged for it to be done, but my lips gave service to an empty greeting. The moment of truth had arrived. We braced for the declaration: our son was autistic. Nothing could prepare us for what the doctor had to say next.
The doctor explained our situation as if we were unfamiliar with it ourselves. We had one child who lived with us occasionally; we had two children, including Willy, who lived with us permanently; and I was pregnant with yet another child. The conclusion this professional drew from our circumstances, however, stunned us. Our son must be institutionalized for the good of his siblings. The doctor’s reasons rolled over us—meaningless and empty, devoid of compassion for the life he expected us to throw away.
I wonder, even now, if he saw the horror in our eyes. My husband and I exchanged looks of mutual understanding: “We have to leave now!” I don’t know if the doctor saw our bodies tense. I felt as if I would break into a million pieces. Thinking back, I should have been screaming. I should have screamed my outrage at the top of my lungs, but I could barely find the breath for the polite words that tumbled out of my mouth. I had nothing left to scream with.
The doctor kept on. Our son would never speak, never practice pretend play, never attend school with his peers, never say “I love you,” never live independently…. There were so many things our boy would never do. He’d drain our family of energy, of resources. He would deprive his siblings of the normal, happy home they deserved. Adrenaline pumped through my veins: the “fight or flight” response to danger scraped across my nerves every moment we lingered, listening to the doctor’s litany. All I could do was sit there and hold my son close to me, numb to the words pouring out of the doctor’s mouth. In none of those words was the help we’d come to find.
We traversed a veritable maze of paperwork in order to free ourselves from the confines of the clinic. Then, we left. We never returned. Our son would not be institutionalized—not while I had breath in my body and blood in my veins. Nor would he be institutionalized after I was dead—not if I had any say in the matter. We would look for the help we needed somewhere else. We already had a team of teachers and therapists at our local school. They didn’t think our boy was worthless. Of course, they didn’t know what more to do, either. But there had to be someone, somewhere. Someone had to know and to care.
So, did we find the help that we needed? Yes, maybe; but no, not really. When my boy was diagnosed, there were many recovery stories happening in far-flung places carried out by people who staked their personal wealth on their child’s cure. The stories made for impressive literary experiences. But we didn’t have any wealth. We relied on government assistance just to access basic healthcare services. As far as we knew, there were no treatment options available to us, aside from institutionalization. Nobody ever mentioned any, and it’s not like we didn’t ask. We were set adrift.
The Internet was something of a tether. Online, I found parents who believed their children were valuable, lovable, precious little people. It was refreshing to find mentors who knew, who cared. I also found autistic adults, people who understood my children in ways I could not. They didn’t just see and watch. They had lived it. They were still living it. Those miraculous recoveries seemed far-fetched, almost absurd. Children grow. They develop. They gain new skills and better self-control. Could it be this natural, normal process was called a “cure?” Were these “recovered children” no longer autistic, or were they just more able autistics? The assumption that “more able” also meant “not autistic” seemed to be the only proof of recovery. Something in that assumption grated. I couldn’t put my finger on it. I couldn’t articulate it. But it was there and it would grow.
In the meantime, our middle child grew bigger, more flighty, and still he didn’t talk. It was time to go through the diagnostic process again. But, how? Our resources pointed back to that doctor, that clinic. We were never going back there! So, sliding on a fee scale, we accessed another system, another doctor. She didn’t tell us our son was autistic. She didn’t tell us to institutionalize him. She said, “PDD-NOS, Pervasive Developmental Disability, Not Otherwise Specified.” “So, it’s not autism?” “No, it is autism. It’s just not classic autism.” “Oh.” I nodded, not in understanding, just acknowledging what she said. She provided us with a diagnosis and some literature, but no answers and no solutions.
Again we waited. Again the Internet tethered us to others in the greater autism community. Then, something happened. Something different. There was a waiver. An autism waiver. It was a promise. It was help. It was a solution to the problem of what to do. Like a template, it served as a response to the problem that was autism. Find a service provider for intensive in-home autism therapy and the state of Wisconsin would foot the bill. The relief was palpable.
I should have been suspicious.
By the time my third son was diagnosed, the relationship between my family and our autism service providers had soured. A truth that I found inevitable and unmistakable—that my children were not broken—was denied. I told the therapists they were not there to fix my children. But they were. They tried. Their goals were not our goals. We wanted our children to be as able as they could be. They wanted our children to be not autistic, to be normal. To be just like everyone else.
But there was a price to pay for that. They refused to serve the needs of our youngest child, our baby. He was rejected. We were rejected. And they caused problems.
We still won, in the end.
We found new providers who were better matched to our needs. Does this mean we got the help we needed? Not exactly. We had to patch it together: the information, the resources, the planning, and the cooperation. Different systems—the waiver, the school, other medical services, respite, information, advocacy—functioned to serve different needs, but putting them all together and getting them to work for my family was like a full-time job. And I still had to make the time to raise my children and earn a living.
Since his diagnosis and the awful prognosis that followed, my eldest son has done all those things the doctor said he would never do. Well, except for the “live independently” part; he is, after all, only twelve. With the help of some wonderful therapists, teachers, and administrators, we worked hard to ensure that he had every opportunity to develop and grow—to live an enriched, happy life. His younger siblings’, on the other hand, continued to struggle. We worked no less hard with our younger sons. Their therapists, teachers, and administrators were no less dedicated to ensuring they had the opportunity to develop and grow, and to live enriched, happy lives. If anything, their teams are larger, with a wider variety of skill sets. Still, their severity is more constant and more challenging than the trailblazer who would have been discarded had we listened to that first doctor. We would have lost not one child, but three.
Had we followed the doctor’s recommendation, we would have handed all three of our children to a system that refused to value them as human beings, a system that is determined to see them as broken, a system that is determined to fix them no matter the emotional cost to the child who is, after all, not quite human yet. Instead, we chose to keep our children. We chose the struggle. People assume the struggle is to raise our children, to cope with their disabilities. That can be a struggle. But there is a greater, more difficult struggle. It’s the struggle to cope with a society that lacks the inter-connected systems necessary to meet our children’s needs, a society that does not value our children or their needs. We connected the pieces society provided for us together. We continue to do so. We keep fighting, advocating, telling anyone who will listen that our children are people—human beings with human rights, including and especially the right to be who they are.
Looking back, neurodiversity—the recognition that human beings are neurologically diverse and the belief that individual human beings are valuable regardless of their neurological makeup—came instinctively to both my husband and me. This believe lives inside me with a motivating burn that drives me along my path as a parent and as a person. I seek redemption and repair not for my children, as was expected of me, but for a world that would deny my children the freedom to be the valuable, worthwhile people they naturally are.
Though this passion has driven me from the beginning—though this belief in my children’s inherent value set fire to my soul—I still didn’t know that there were others like me. I thought we were alone. I didn’t know there were advocates all around the world fighting against the deficit model of autism. If I had found these kindred spirits earlier—those who didn’t see autism as a shameful secret to be cured or hidden away, but instead saw autistics as people who were exceptional, wonderful, unique and precious human beings—then, perhaps I would have been less devastated by the doctor’s prognosis. Perhaps, if I’d know then what I know now, I would have looked that first doctor in the eye and told him to his face that his attitude was destructive and unworthy of one who had sworn the Hippocratic Oath.
There’s power in a word. Autism is a word that has power to evoke fear in the parents of vulnerable, young children. Autism has the power to wake parents in the middle of the night, sobbing for the child they have lost, as if autism killed their normal child and replaced him or her with an empty proxy. If only they can break through the shell, they will find the normal child still there, waiting to be rescued. Autism is a soul-stealer, a family-wrecker, a plague or epidemic. They must eradicate autism, before it drains their families and our society of life and resources. Parents try to poison the autism out of their children. They try to abuse the autism out of their children. In moments of despair, they kill their autistic children, because it is better to be dead than to live an autistic life.
Words are shaped by how we use them. Autism is a word that has been shaped by parents and by researchers, each with a vested interest in vilifying that word. These are parents who’ve found themselves in a situation they do not understand and cannot control, and find that situation unendurable. These parents are bombarded by negative messages from people like the doctor who gave us that awful prognosis and from researchers who profit by selling the latest “cure”—whether it’s medication, an unproven therapy, or something more sinister—as an end to their suffering. But to profit, they must convince these parents that they are suffering. So, autism is abnormal. Autism steals their child’s soul. Autism cuts their child off from the world. Autism is a puzzle and their child is just a collection of missing and broken pieces. And the autism business booms.
But there are other voices, desperate to be heard over the celebrities, the quacks, and the parents who refuse to accept that their child isn’t normal and that it’s okay that their child isn’t normal. They are the voices of autistics. They are the voices of loving, accepting parents and siblings, grandparents and friends. They are neurodiversity advocates and they have a different message to share with the world.
Autism is a word that has been distorted. Vilify autism and reap the rewards: death, destruction, despair, and money—lots and lots of money. But autism is not a fairy folk disorder that switches out your normal child for a broken changeling. The changeling will not go home, returning your rightful child, if you torture it enough. Autism is most likely not any one thing at all. Autism, as it is diagnosed, is a set of observed behaviors tied together in such a way that, when interacting with a typical environment, manifests in disabling limitations. Learn how to change the environment, the people, the programs, the systems and the ways they interact with the autistic child and you open up those barriers. You can remove the impediments that limit the very real person who is one example of this set of behaviors we call autism.
We found those voices that spoke of worth, of value, of potential. We found the programs and the people committed to benefiting our children. Not curing them, not chasing off the changelings so our real children could be revealed, but helping us accommodate and nurture our real children. So that our children could be the best, most able autistics they can be. Like raising any other child, it’s a work-in-progress. There are ups and downs. There are trials and errors. These advocates don’t offer a “cure,” nor do they provide one-therapy-fits-all solutions. They offer hope; they teach progress, both for the child and for the world.
But even their voices are distorted. Aspies are raised up as the new symbol of autism. It’s easier to look at an adult with high-functioning Asperger’s and say that this person is valuable. He holds a job, has a family, and contributes to society in ways that our society expects and appreciates. He competes on American Idol. He contributes to the tax base. He’s economically viable, perhaps even self-sufficient. But not all people with autism can be high-functioning Aspies. The worth of the person is not tied to their taxable income or their economic self-sufficiency. Human value is deeper, more lasting than economic merit.
Unlike most parents, I have to fight for my children’s right to be alive. I have to fight for their right to wake up autistic, to breathe autistic, to play autistic, to be autistic. Most parents in the United States do not have to fight for their children’s right to exist. Most parents do not have to read stories of children just like theirs murdered for being who they are. Most parents don’t have to read about how the murderers justified their crimes as mercy. Most parents don’t have to read about how the courts rewarded the murderer’s mercy with a light sentence or acquittal. Most parents don’t have to live in a society where killing their child is justified. Autism can wake a parent in the middle of the night with terrible dreams of the eugenics programs of the past that would sterilize and euthanize people just like their children.
How do we change the dialogue on autism? How do we shift away from the villainy purported by authority figures with a vested interest in their pursuit for a cure to a state of being? How do we open up the dialogue to those who actually experience this thing we call autism? How do we put human faces to a disorder the media is intent on dehumanizing? Not the faces of parents who are unable to cope with their thwarted desires for a normal child, but the faces of the children and the adults who live among us as autistics.
How? We listen. We listen to the people who experience autism every day, not as something they observe, but those who live with autism because they are autistic. We see their faces, instead of blinding ourselves to their existence. Perhaps if we all opened our eyes and saw people, instead of diseased or disorder not-quite-people, then I wouldn’t have to read one more time that a parent killed their autistic child. Death is not the answer for autism; neither killing the autism nor killing the child. We have to listen. We need to love. And we need to let live.
Some people claim the darkest side of autism is how it traps a child behind an invisible wall, cutting the child off from the real world. Others claim the darkest side of autism is how it ruins families and destroys fortunes. Still others claim the darkest side of autism is the lost possibilities of a child who never really grows up. I disagree. The darkest side of autism is our willingness to snuff out a human life, because that life just doesn’t measure up to our expectations.