My mother-in-law was the most vocal with her discomfort. She said it should be a crime to reproduce if you could possibly pass a disability on to the child. My ex-wife yelled back into the phone, "Are you saying Zosia shouldn't have been born?" My mother-in-law was quick to point out that, at the time I was born, we had no idea autism ran in the family.
If my mother knew her children could be autistic, would she have chosen to have me? I never asked her, but I am confident she would say yes. Now it was my turn in life to answer this question. I never thought my answer would be considered radical or even controversial. I always believed that any kind of person has the right to come into existence and be among us.
When I lived at a Camphill Community in Ireland, a working farm village populated by people with and without cognitive disabilities, the unfolding of this inner truth that had lived inside of me came into conscious reality for the first of, luckily, many times. I lived in a house with a couple, their two sons, seven adults with cognitive issues, an adult with epilepsy, and two college students — one from Norway and one from Holland. I tried many different jobs while I was there. One day I was chopping carrots for stew when Anya stormed in, threw the carrots in a million directions, and then put the bowl on her head. She laughed and twirled and ran out the door. Anya did not speak, typically, although she sang in a high voice to her father. She did not appear to have any assigned tasks on the farm or in any of the craft houses or homes. Instead she wandered around engaging with people in her unusual ways. Sometimes she would sit near you and hum and seemed filled with peace. Other times she was a whirlwind of activity, activity that seemed to delight her but that, admittedly, often caused havoc for the rest of us.
I quizzed my house mother that night. I said to her, "You told me everyone has a job. Everyone can work. So what is Anya's job?"
"Mmm…," she smiled. "Anya is a teacher. She teaches the rest of us about being human."
In that instant, so many beliefs crystallized inside of me, and I suddenly saw the worth in every person, like a flash of inspiration — not that this hadn't lived in me before, but now it had been born. Indeed, during those months I stayed at Camphill Grangemockler, Anya taught me much. She taught me patience. And she taught me the true value of chopped carrots. You can always chop some more, but you can never get another Anya.
By my early 30s, I knew that Asperger syndrome ran through my family's genes. The etiology of autism has not been proven, but my grandfather, my father, my uncle, a cousin, and a different cousin's child are all clearly on the spectrum — a sprinkling of unofficial and official diagnoses. We certainly didn't catch it from each other. Despite an obvious genetic risk, I wanted to be someone's parent. Sure, I held some secret fantasies of how it would be and what we would do together — swimming, camping, science projects, Scouts. I couldn't wait to see my children learn and to learn myself along with them. But truthfully, even if I were to have an Anya, someone who could hum like an angel and keep me company and teach me to love all people, I would be happy. I could love, and learn with, any child who came to be mine. And so my ex-wife and I made our decisions, cast our lots, and decided that we would have a child.
Three things stand out from my ex-wife's pregnancy. First, we had to sign five forms and have two of them notarized if we wanted to refuse prenatal genetic screening. When I asked the nurse practitioner to hand me the packet of forms, since we could not be dissuaded, she was shocked. The clipboard in her hands slipped slightly, and her cheeks filled with air as she struggled to blurt out, "Well, I don't know where the forms are exactly. Nobody's filled them out before." The director of the in-vitro clinic wanted to speak to us. Thus, we had to endure missing forms, an interrogation, and procedural delays to love our unborn children just the way they would be.
Second, the doorbell rang at 5:00 AM, and there was the delivery girl with a buffalo burger from the 24-hour diner. Apparently my ex-wife had been ordering one every morning for weeks, and I had simply slept through the deliveries until then.
Third, I stood by helplessly each evening while she threw up. "Aren't you supposed to get sick in the morning?" I asked.
"Well, I think so," she answered, "but maybe these babies are special or something."
Our twin daughters were born more than two months early by emergency C-section. We had no time to wait. The drugs they dispensed to stop pre-term labor didn't work, and Baby B's heart rate was erratic. Later that night as my girls lay in their plastic NICU tanks, hooked up to a million wires, I knew that I already admired the courage of these two strong ladies. E. didn't let hypotonia stop her — she managed to flip herself away from the bright lights or feebly shield herself from them with a carefully flopped arm over her eyes. And R. constantly spit out her C-pap until the nurses just let her keep it off. I remember the head nurse saying, "Well, fine, if you want to breathe on your own honey, go right ahead!" I beamed with pride — my feisty daughters.
I'm not sure how we survived those first few years. My ex-wife became very sick soon after the girls were discharged from the hospital. There we were, enduring each other's disabilities and special needs, and it was hard. Days and nights were exhausting. We didn't bring the girls to the new parents groups or the mommy-and-me time at the library. No, we were shuttling them between PTs and OTs and SLPs and wondering if we could handle another fight on the phone to initiate a service or prove a need or transfer a record. I tried several types of jobs at this time, but nothing worked out. We were under financial duress, isolated socially, and when it was clear that both our daughters had various developmental issues, the blame started to roll in.
I felt a kind of pain I'd never felt before when someone would say, "See, we told you. You should never have had genetic kids. Now look what you've done!" How could anyone say this, let alone think it, as I held my daughters' tiny hands or watched one of them smile in delight at a ray of sun on the floor? My girls were beautiful, happy creatures. They loved to learn and play. The cat made them smile. They loved to eat edamame beans and to wear their soft, fuzzy pink pants. Our lives were different but valid. Each one of us in our family experienced the joy of being alive. Isn't that reason enough to be born?
The "G" Word: Genetics
Currently a swirl of debate about autistic partners and parents has descended upon the autism community. I have seen no academic analysis of the arguments that are currently spanning the globe. It is even difficult to trace how all of this started. Some writers have contended that autistic partners invariably cause mental illness and trauma in their non-autistic spouses and significant others on the basis of a few case studies of women who self-referred for assistance with their marriages. Other writers have suggested to courts and mental health practitioners that an autistic person is never a fit parent, with dire consequences for families.
Perhaps this "blame game" began with Bettelheim targeting parents as the cause of a child's autism. His understanding was psychological, indeed psychoanalytic: parents caused autism in their children because they were unloving, cold, and abusive. His ideas, I hope, have been completely discredited.
Yet herein lies the first tense paradox. What if we do give our kids autism, not because we are neurotic or pathological, but because the autistic way of thinking, feeling and loving runs in families? Why is that such a horrible thing to contemplate? Dr. Kanner himself wrote in 1943, "The children's aloneness from the beginning of life" paired with similar traits in parents and children make "it difficult to attribute the whole picture exclusively to the type of early parental relations."
I know Little People who have children, and nobody screams at them when their babies come out Little. Deaf parents sometimes have Deaf children. Disabled parents have disabled children of all sorts. It is quite an ordinary phenomenon, and in progressive circles parents with a wide range of disabilities are not disparaged for the choices they make. In fact, Matt Roloff became a reality TV star. Why is it so vastly different when it comes to autism? Why, for lack of a scholarly way of putting it, do people "flip out" with such extreme hostility at the thought of an autistic adult having a child? What is different about autism?
Highs and Lows: Maybe That's It
One stark argument often hurled at would-be autistic parents concerns their ability to do the job. If you are on the autism spectrum, and you have many skills, and you have a child who, whether on or off the spectrum, also has many skills, then the reaction against you tends to be less fierce. At least you haven't consigned your child to a "low functioning" life devoid of purpose and fraught with severe challenges. And at least you can perform the duties of parenthood without burdening society. The story is different, however, if the child is significantly disabled.
Something is wrong with this logic. Every child is a whole person with a mix of strengths and weaknesses. Why divide children into "easy" ones and "hard" ones — with the subtle hint that the hard ones maybe shouldn't be here? Without falling into a strict economic analysis of parenting and childhood, clearly our society emphasizes production of wealth to an extreme. Those who cannot conform to this dictate are therefore less valuable in such a system. Yet on a philosophical level, do people ever ask themselves, "Why do we produce this wealth except to be able to take care of each other?" I do not have all the answers, but somehow we must find worth in every person, even those who do not produce or contribute in typical ways. All humans have something to offer. Remember Anya, the teacher? She changed the entire trajectory of my life without uttering a word.
Communication and Socialization: Another Idea
The false dichotomy between so-called high- and low-functioning autism may fuel the opposition to autistic reproduction, but I humbly submit that the "problem" is multifaceted. On the one hand, damaging and incorrect stereotypes of autistic people are still in vogue, and, on the other, autism is rightly defined as a set of challenges in communication and socializing. The two ideas are bound up with each other.
The classic stereotype holds that an autistic person lacks reciprocity and empathy. Yet the autobiographies of autistic individuals prove this to be woefully inaccurate. While science locates such difficulties in the brain, disability scholarship attributes them to society's refusal to accommodate multiple methods and styles of communicating and relating. Dr. Gerhardt, a prominent autism scholar and advocate, affectionately refers to "neurological curb cuts" as crucial for bridging the divide between autistics and the neurotypical majority. When the world at last sees autistic people as having all of the feelings, dreams, and desires associated with personhood, stereotypes can be dismantled.
Dismantling stereotypes is vital because conceptualizing an autistic person as lacking emotions, empathy, or the ability to relate makes parenting seem both impossible and dangerous. I recently wrote a book about parents on the spectrum and in the process interviewed about two dozen families from around the world. All of the autistic parents I spoke with considered such negative stereotypes as both interfering with a clear view of autistic parenthood and outrageously inaccurate.
Which leads to the second part of my hypothesis: because autism involves challenges in communicating and socializing, professionals, neighbors, mothers-in-law, courts, marital therapists, and others erroneously believe that we will damage our children. In their eyes, our parenthood seems almost an act of criminal neglect. We do not do things in typical ways; thus, our children will be forever caught in a deficient atmosphere, or so the thinking goes. They will grow up deprived, perhaps even to the extent of becoming autistic themselves. This is contrary to what Dr. Kanner suspected and what science is now slowly unraveling: for the most part, autism seems to be something you are born with, and while we may be different, we are hardly deficient or dangerous.
Putting aside for a moment the raging debate over the etiology of autism, communicating and socializing atypically should not correlate necessarily to failed parenthood. The parents I interviewed did not deny their problems. But, like all parents — even "normal" ones — they found new strategies for being successful and met their responsibilities to the best of their abilities. In other words, autistic parents are just like normal parents! Some autistic parents even considered autism a strength, especially with respect to understanding each child's uniqueness, whether on or off the spectrum. Autistic parents displayed great sympathy for a child's individuality and did not expect or demand conformity. Others found intense and beautiful ways of interacting with their children, ways not always typical but that had profound meaning and value. I am sorry to report that there isn't much material for a reality show. Except for the undeniable and beautiful sparks that come from our distinctive ways of solving problems and dealing with the world, and except for the consequences of a wisdom that arises from living in an often intolerant and discriminatory society, our families are, frankly, profoundly ordinary.
This is not to deny wider issues of quality of care. Just as the community of "normal" parents must grapple with a certain percentage who neglect their responsibilities or can't handle them, so the autism community must do the same. But the vast majority of parents are quick to grasp the enormity of their choice the second they are handed a helpless infant. As your child grows, and as you grow in tandem, you realize that you cannot possibly be perfect. But your children don't expect perfection. They simply want you, in all of your human vulnerability, and they thrive from your love, not your omnipotence.
Cultural Factors: The Missing Component
Related to the issue of atypical communication and socialization is the cultural setting in which parental competence is judged. The structures of a society have an impact on family functioning. In other words, to what degree is a family struggling because of intrinsic autism-related challenges and to what degree is the family struggling because of society's discrimination, intolerance, and refusal to invest in those neurological curb cuts Dr. Gerhardt speaks about?
As a result of the Bettelheim legacy, parents who receive a diagnosis of autism in one or more of their children are usually terrified to analyze themselves. They may feel guilty or ashamed if they do indeed discover autistic traits in themselves or other relatives, and they may go to great lengths to prove that nobody else is anywhere near the autism spectrum. What toll does this take on a family? Many autistic families have slipped into multi-generational patterns of denial and isolation.
What if professionals were to look at the entire family when parents ask for assistance with an autistic child? Then parents who are on the spectrum could also receive services, which might increase the family's strength and capacity to cope. The current vilification of autistic parents who may be having trouble is simply misplaced. The problem is not autism. The problem is a lack of access to the best interventions and therapies, to respite care, and to health insurance for physical and mental needs. The problem is what "normal" parents face in a generally child-intolerant society: problems ranging from a lack of family bathrooms to job hours that do not coincide with school hours. If autistic people had access to parent coaches, quality vocational rehabilitation, respite networks, adaptive cribs and equipment, health care — the list goes on and on — how disabling would autism be?
When we view the disability of autism through a social model, we stop blaming autism and start blaming the real culprits: injustice, inequity, greed, misguided priorities in funding and policy, and, as discussed in the section above, stereotypes about disabled people that limit the quality of our lives more than the disability ever does. Right now, families in which one or both parents are disabled often struggle not because of the disability per se, but because society hasn't provided or prioritized "family curb cuts" — and this may be due to eugenic values that are tightly woven into the fabric of American society.
The Last Word: Eugenics
A detailed analysis of autism and eugenics is beyond the scope of this paper, but parenthood is, obviously, at the heart of the debate. The intense and sweeping reaction to autistic parents, which is stronger than the reaction to parents in almost any other disability category, reveals an alarming preference for normalcy. Maybe we should stop looking for the magic autism gene because if we found one, would people start aborting us? Our community slogan could change from "Finding the Cure" to "Genes Happen." Honestly, as a society, do we want to continue sliding down the slippery slope of eugenics? We now abort those likely to have Down syndrome. Who's next? Jews? Gays? Blacks? Autistics? Anyone want to volunteer? Disabled people do not want to volunteer or be volunteered. The argument that some people are more expensive or difficult to educate and support, and therefore somehow less deserving of existence, is morally repugnant. I cannot imagine my life, or the world, without the two young women who are my daughters. They are full of gifts. Gd forbid that anyone should ever have the ability, desire, or power to decide who gets to exist, to see sunsets, to slurp ice cream, to feel love.
I was just at the Society for Disability Studies conference in June 2009, and as I contemplated the scene before me — people with all kinds of bodies and minds whizzing by on missions of business and pleasure — I had a revelation. The great drama, the fascinating story to be told, is not what happens in my house at breakfast time or on the way to gymnastics. Rather, the great drama is that human beings of all sorts are born and live. Perhaps, in some small way, autistic parents and partners speak to this. Of course, society needs to be ever vigilant that children are safe and receive adequate care in their homes and in their communities. But we need "all hands on deck" — as much diversity as possible — to right the ship of humanity. Now that our understanding of the mechanisms that cause neurological variation are slowly being discovered, how will we choose to respond to difference in the future? This question needs to be at the forefront of debate regarding parents with any sort of disability. The call for a just and tolerant society is not a liberal plea for more welfare but rather the desperate cry of a civilization that will cease to function without the diversity that fuels human endeavor and compassion.