The 'C' Word in Autism: Common Cause in Spite of Conflicting Perspectives
I was sitting at Taco Bell with my 13-year-old who has Asperger's syndrome. Out of the blue, he said, "It's really good that you're working to figure out autism, Mom, but if you find a cure, I don't think I want one. I really like who I am."
The autism community is remarkably diverse. Some of its members have autism, some have Asperger's syndrome, and some have "pervasive developmental disorder not otherwise specified" (PDD-NOS). Some are parents, siblings, spouses or friends of a person on the spectrum. Circumstances vary widely, too. Some individuals have just received a diagnosis, and others have lived with the diagnosis and its realities for years. Areas of challenge and giftedness differ from person to person, and each person is in a different place in the life span and in their overall development.
It is no wonder perspectives on autism vary widely. Nowhere do they vary more widely than in two distinct views of the word cure. The meaning of the c-word and the emotions it evokes can be radically different depending on who you are talking to. The purpose of this article is to try to help everyone, no matter their perspective, gain insight into the other perspective -- the one that makes absolutely no sense or seems insensitive from where you stand.
What are these two disparate meanings? Cure as hope, as answer, and as healing...and cure as hurtful condemnation of a different way of being and thinking. You do not have to delve very deep into autism blogs, discussion forums, and chat rooms to find the clash between these two points of view.
Cure as Hope in autism
In the dictionary, the word cure is most simply defined as "a means of healing or restoring to health; a remedy." 1 It is a positive thing, a helpful thing, associated with alleviating suffering. If someone is dying of cancer or heart disease, and you cure the person, he or she is able to become well again. He or she is made whole.
In medical terms, autism is defined as a disorder, that is, a disturbance in physical or mental health or functions. It therefore lends itself to the notion of "cure." Imagine a parent with a young child who was developing normally, or nearly so, and then lost skills and changed personality. The child was affectionate, seeking cuddles and making eye contact. To his parents' delight, the child had begun to speak a few words. Seemingly overnight, all of that disappeared. Bewildered parents feel as if the child they had was snatched away to be replaced by someone altogether different. (Indeed, it has been suggested that folktales about changelings -- unaffectionate, rigid children left by the fairies in exchange for a healthy, happy child -- represent an older culture's attempt at explaining regressive autism.) 2
Modern parents do not seek explanations in folktales, but in medical science. Devastated and scared, they search everywhere for answers, trying to make sense of what has happened. Having watched Lorenzo's Oil, in which brokenhearted parents doing their own research helped move science forward to aid children with the same condition as their son's,3 parents search the net, occupy medical libraries, read everything, create their own theories, raise money for research. Meanwhile, they grieve for the struggles their child is going through, and for their own. Financial strain, marital conflict, and careers sacrificed are just a few of the possible side-effects of a determination to do right by a child with autism who may need many treatments or therapies and who, due to a variety of challenging behaviors, may be difficult to live with day to day. Loving their child, they do all they can.
It seems obvious to them that what is going on with the child is not healthy, not functional, not the way it is supposed to be, and not -- in the case of regressive autism -- the way it used to be. It is natural, then, to seek a way to restore the child to wholeness.
A parent on one discussion forum stated:
We need to find a cure...and remedy for this very sad illness that afflicts our children. I have started prayers, as well, and pray to God to heal these children.
When parents say they are seeking a cure, their words are imbued with hope and with love. They want to help their child be well again, to be him- or herself again. They want their child not to suffer, not to struggle, not to be teased or bullied, not to be disabled. They fear the hard road ahead for their child.
The notion that the word cure could have negative connotations may come as a shock.
Cure as Condemnation
The thing is, autism is not like cancer. It is not easily separable from a person, like a virus or a tumor. It is so much a part of a person's behavior, entwined with their way of taking in the world, and with who they are.
What that means is that there comes a point when an individual on the autism spectrum who is simply him- or herself may not want to be "cured." Being cured sounds an awful lot like annihilation, like giving up some struggles, but losing your selfhood and the good things about you as well. There are many adults and teens on the autism spectrum who share this view. Writes Jim Sinclair in his essay Don't Mourn for Us:
Autism is not something a person has, or a 'shell' that a person is trapped inside.... Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, 'I wish my child did not have autism,' what they're really saying is, 'I wish the autistic child did not exist, and I had a different (non-autistic) child instead.' This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.4
This may be a startling viewpoint for those who associate the word cure with hope and wholeness. Taken in historical perspective, however, it is not so startling.
A series of movements based on embracing marginalized identities arose in the twentieth century. Although each movement was different, they shared a core similarity: a group of people who were defined in negative terms by the dominant culture defied that definition to value who and what they were.5
For example, stereotypes of African-Americans were overwhelmingly negative, and far too often internalized. It is one thing to have the dominant culture declare you stupid, lazy, or ugly. It is even worse to realize your children have taken this in at a very deep level, have come to believe it, to evaluate their own potential or appearance or worth based on it. In this context, the simple phrase "Black is beautiful" was a powerful act of resistance. "To be liberated from the stigma of blackness by embracing it," wrote James Baldwin, "is to cease, forever, one's interior agreement and collaboration with the author of one's degradation." 6
Movements founded on race, gender, ethnicity, sexuality -- all of these were based upon seizing an identity back from the dominant culture, to declare the worth, the strength, and the beauty of the group in a wholesale rejection of an earlier view of the group as inferior or bad.
Deaf Culture was the first instance of this in the realm of disability. Because many of the deaf were placed in special schools, away from home and the hearing community, they began to form their own culture and identity. They began to revolt against the view that they were defective people who needed to be cured of an affliction, dependent people who would always be at the mercy of paternalistic caregivers.7,8,9 Soon thereafter, a broader Disability Rights Movement arose.10,11 Like similar movements, it challenged a depressing view of people with disabilities that they had often come to believe themselves. Disabilities activist Nadina LaSpina, crippled since birth, wrote of a friend with spina bifida who had confided with desperation that she wanted to be a "real" woman and would rather die than be disabled. Looking back on her friend's suicide, LaSpina wrote:
I couldn't tell her 'We are real women, we can have a real life, we can be happy.' I didn't have the words yet. I couldn't tell her that it was our 'internalized oppression' that made her hate her disability and herself. I couldn't tell her that what made her so unhappy was not her disability but the way society treated her because of it. 12
In recent years, individuals on the autism spectrum have also united to resist definitions of them as broken or dysfunctional. They have called for neurodiversity -- an acceptance of all people, irrespective of their neurological wiring. 13
It is in this context that individuals with ASD take exception to the notion that they need to be "cured." Said one individual on a discussion forum for adults with Asperger's:
I am who I am and most of the time I like me. A "cure" for my neurological differences would mean giving up a lot of what makes me, me. No way. A 'cure' would essentially mean the death of who I am now.
To try to get their point across, they have sometimes used humor. The purely fictional Institute for the Study of the Neurologically Typical turns the tables on people who are "neurotypical" (NT) by describing them the same way the dominant medical/psychiatric model describes people with autism:
What is NT? Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.
Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.
Tragically, as many as 9,625 out of every 10,000 individuals may be neurotypical. 14
Touché. Who wants to be described like that?
Transcending the Divide
With one group calling fervently for a cure and another declaring they want no such thing, it might seem unity could never be achieved. Fortunately, there are many who do not hold one extreme position or the other. Parents, sensitive to the fact their older children on the spectrum understand doctors only "cure" people who have something wrong with them, can find themselves as reluctant to use the c-word as some adults with ASD. To quote a mother posting on the IAN Discussion Forum:
Perhaps a cure would be throwing the baby out with the bath water. While it is true that people with cognitive impairment are overrepresented in the autism community, so too are people with exceptional giftedness overrepresented in the autism community. It seems that finding ways to channel the positive aspects of ASD mental architecture, while finding ways to breech its hindrances, would be a worthier goal. If I were to cure anything, it would start with the social attitudes that continue to stigmatize people with autism. How about changing Autism Spectrum Disorder to Autism Spectrum Differences?
Many adults with ASD have also come to express a nuanced view, saying that how a person feels about the word cure can depend on how deeply they are suffering with symptoms of ASD. A high functioning person with Asperger's who has a job and friends who share his special interest, for example, cannot decide for a severely affected person with intellectual disability, no communicative ability, and multiple stimming behaviors that he or she should not ever desire a "cure."
What may be most useful is to not let the c-word get in the way of what everyone wants: a greatly improved situation for individuals with ASD and the alleviation of any suffering.
Gathering information about the situation of children and adults on the autism spectrum will help researchers explore differences in biology and neurology, leading to an in depth understanding and more effective treatments. It will also provide advocates with concrete data on needs and to what extent they are being met -- potent information that empowers them to fight for change.
It is our hope at the Interactive Autism Network (IAN) that we can serve to gather this information to the benefit of adults with ASD, children with ASD, and all of those who care about them.
Whatever the c-word means to you, we hope you will participate in IAN.