The "C" Word - What it Means to "Cure" Autism
By Connie Anderson, PhD | Interactive Autism Network Community
"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 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 mental retardation, 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.
To read the references for this article, click here
Reproduced with
permission of Kennedy Krieger Institute, Baltimore, MD.
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My 11 yr old was 6.5 yrs old when i first relised he understood he was different. caught him trying to poke out his own eyes and when i tried to stop him i asked him why on earth he would do such a thing . He said and i quote cause then mommy you take me to doctor and i be normal . He had been tormented and teased all day that day at the park . I wouldnt want to change the core of who my son is . But Autism isnt what makes my son the boy he is . My parenting and teaching is what has made my son the good funny happy child he is today But if they could fix all the things that makes his life a daily challange To protect him from the future YOU BET I WOULD he would still be the boy i brought up The only difference is he would get to grow up and not have to always live life with a caretaker I love my son with all my heart and even if i beleaved that his Autism started before his brith he would still be here but i do wish that there were a way to make his life eazier
I am a mother of a Autistic son he is now 34 years old.First let me say 34 years ago Autism was not very well known,most people with Autism were place in group home and forgot about.
When my son was born everything was great he was very smart by the time he was 2 years old counting in french speaking all the time. Looking at newspapers and such. Not once did he look at or pick up a child's book.
I can remember one day packing up Christmas present and wrapping them to send to our family in Newfoundland ,I went into the other room can not remember why,and when I came out my son had every flag in the world drawn on this parcel. I could not believe my eyes.
Then it seemed over night my life change and so did he it was like he was deaf,he had no eye contact ,no speech everything was gone. I took he everywhere ,doctor I can not remember how many,hearing clinics to see if he was deaf ,I even had him put into the children's hospital where he was treated like an animal ,but into to crib with a doom over it so he could not get out. But you see I was looking for an answer ,and was trying to find out what ever I could ,but when they put him into a little box all locked up to do a 24 hour huron test ,I said that is enough and took him home.
I did not give up looking for help but I thought I was going to go crazy too.
At the age of 5 it was school time, he was there 2 hrs and they threw him out. Now where do I go well it came to special add,and between the teacher and my sister in law they both said they thought he was Autistic.
I then looked for help again, a lady that worked for the school help me have him admitted to the hospital for a 6 week program , at this time my son was 6 yars old. Anyway they told me at the final week he was severely Autistic with a learning disorder. So I started to read what ever I could I spoke to lots of Doctors,and said this is enough.With the teachers help we worked together (time out ,eye contact,and being firm).
During this time I had meant a lot of parents with children with the same problem we ever started a little group with Doctors for support.we all tried to figure out what happen to our children ,nothing came to mind. We even started a summer camp program with help from the government.
Anyway ,I worked day and night along side with the teachers I never gave up on my son.I could not expect the teachers to work with him all day and me do nothing. By this time I also had another son which made t harder ,a husband always at sea. So it was up to me to do the best I could .
To make this story a little shorter threw all the hard work and the help from all the teachers my son has a Commerce degree ,the fifth Autistic person in North America to graduate from university ,also several degrees in computer programming.I will say it was really hard work endless days and nights ,but look how far he has come. He holds a job as a Web Master,and loves every minute of it.
So from me to you do not give up on your child no matter what they do or say and try your best to work with the teachers and doctors. Sure your life will stop for years but remember one thing ,this child did not asked to come into this world ,so it is up to you to help the best you can. Do not for one minute give up there are so many places and people now a days that can help .
My child found alot of friends and so did I though the Special Olympics. This was a great help in my life and my childs to find that there are others with all kinds of disabilities.
So please do not give up.Take one day at a time.
Your friend
Jeannee
I am autistic, I am disabled, and I do not want a cure. I’ve lived my whole life autistic. The way I think and feel and see the world is built on a developmental scaffold that includes autism . A total "cure" for autism would be like having your personality and skills erased, and having to re-learn everything, like an infant. It would be very much like death, I think.
I have been told, "You can communicate. That means you do not have the right to speak for anyone who cannot communicate, because you cannot know what it is like to be non-verbal." But do non-autistic people have any more right to presume what those people want than I do? How do they know what an autistic person would want; and why would they have any more insight than me? Nobody knows what it is like to be somebody else. I may not be able to tell whether non-verbal people want a cure; but neither can you.
The idea that people who cannot speak must want to be cured comes from a fundamental misconception: The idea that non-disabled is intrinsically better than disabled, in all cases, for everyone.
But having a disability isn't the most important factor here. There are many more important things--the right not to have your brain modified against your will; the right not to have your behavior modified just to make other people more comfortable; the right to have education that makes you more functional rather than more "normal-appearing". (In many cases, autism therapy will focus on normality at the exclusion of all else. This is a great mistake. Autistic people were not meant to do things the typical way. It is as bad as forcing a left-handed child to use his right hand.)
I have no problem with education and therapy and in some cases even medication for autistic people. I have benefited from them myself (though sometimes, was mistreated and hurt by them). It stands to reason that a child with a different mind must need a different sort of education. I think it very important to give every autistic person the education he needs to reach his potential. But I think it is very wrong to presume that the best possible state for an autistic person is to be non-autistic.
The Internet allows many people who have difficulty with speech, or no speech at all, to communicate through writing. I have communicated with many people, at all levels of the autism spectrum from those who live independently with families and careers to those who require twenty-four-hour assistance with everything from eating to diaper changes. I have met people with what would be considered very mild Asperger's who are desperate for a cure; I have met people who depend completely on aides for very simple tasks who would rather die than be subjected to a cure. I’ve never seen any relationship between how independent they are and whether they want to be “normal”.
One example of a non-verbal autistic person who does not want a cure:
http://www.cnn.com/2007/HEALTH/02/21/autism.amanda /index.html
http://ballastexistenz.autistics.org /
Most of the distress in autism, at all levels of independence, seems to come not from autism itself but from the way autistic individuals are treated. When I talk to someone who is sad to be autistic, I often encounter the idea that, "If only I were normal, I wouldn't be treated this way. I could have a job. I could have a family. People would stop excluding me." But nobody should have to think that way! Nobody should have to say, "I am not acceptable; to be acceptable I must change. To be disabled is shameful. I am to blame for the way people treat me." Nobody should have to justify his existence with, "Yes, I'm autistic, but look at my talents or my intelligence." He should be acknowledged to be valuable, intrinsically, without having to be good at anything at all.
The biggest problem with being autistic isn't being autistic--it's the way people look at autism. They think of it as a horrible disease that steals the "real child" away. But it isn't like that. We're here; we're real people. It’s not a wasted life or an empty existence. We want to be part of your world, if only you would let us. We don't want pity; we want the opportunity to live our lives and follow our dreams, just like anybody does. Just because sometimes it's hard to communicate doesn't mean that we have nothing to say. Listen to us. It might mean reading what we write or looking at what we sign or trying to understand our behavior; but just because we're clumsy at communicating doesn't mean there's nothing there to get through.
We don't need people to speak for us; we are already speaking for ourselves. Our opinions are diverse and our personalities are different, but we have one thing in common: We're human. We have the same rights as anyone else; we have dreams and desires; we love and grieve just like you do. Being autistic doesn't make us changelings or walking tragedies. We're just human--just different.
How about we actually focus on first UNDERSTANDING these various traits and their root cause(s), before we arrogantly declare that they require a cure? Cure by whose standard, exactly? If the species were to have been rid of the entire package that we now call autism , say, two thousand years ago, a great deal of the scientific discoveries and achievements of the last two millenia might never have happened at all. It's rather well established that purely neurotypical traits are NOT likely to lead to scientific or technological achievements, because such pursuits are not the goal or focus of neurotypical behaviors.
I am convinced that we are witnessing the ongoing process of another potential speciation event: Mother Nature is experimenting with creating another different breed of Homo sp. We are witnessing ongoing evolution . Not every instance of the mutations is a successful one, resulting in what we call "low functioning" individuals. They can't be "cured", because it's not a "disease" in the first place: it's who they are. Mutation is occurring all the time, not all of it good. Unless we want cookie-cutter humans who all have the same identical set of unchanging traits, we have to take the bad consequences of evolution along with the good.
In my own life, on a micro scale, I'm trying to do that with my own abilities and shortcomings. I neither want nor need to be cured, because I'm not ill. What I really need is guidance to help me minimize those shortcomings and maximize my abilities. Growing up, and on into adulthood, neither my parents, nor teachers, nor employers were able to give me that guidance; they all saw the immense potential and overlooked the shortcomings, trying to make me fit into the neurotypical mold. I'm 48 now, so it's probably too late for me to "have a life" now, but it's not too late too help another generation of mutants.
OK, a "cure" means a reduction in the severity of autism until the patient is at the point where the patient likes both himself and the world the way they are.
I have both benefited and suffered from Asperger traits my whole life long, and I would say that it is perfectly reasonable for parents to wish their child to change into one not subject to irrational screaming fits -- one that will have the potential of becoming a self-supporting adult who an take responsibility for the welfare of others. To the extent that autism is an obstacle, its ameliorization is desirable.
Brilliant article. As a technically bipolar person I really appreciated your views on internalized oppression. No one should be forced into believing that he or she needs to be 'cured', especially when said person is more interesting than the people pushing for the cure.
I appreciate your effort to present a balanced picture of the diversity of views from the autism communities concerning curing autism. Your focus though was primarily on the anti-cure ideology of those high functioning autistic persons and persons with Aspergers who are opposed to curing autism in a general, abstract sense. They are not subject to forced cures. They do not want parents of children with autism to seek cures for their own children because it will make them feel bad about themselves.
There is no mention in your article of the fact that not all high functioning autistic persons share the anti-cure ideology. There is only general mention of the challenges facing severely autistic persons who are not capable of understanding or consenting to the ideology of the anti-cure movement. You make no mention of the very serious self injury, risk of death through lack of awareness of ordinary dangers of everyday life, the likelihood that many severely autistic persons will live in group homes or institutions dependent on the care of others.
There is no mention in your article that the anti-cure high functioning autistic persons will not likely share these more serious challenges faced by the severely autistic and that they have no legal, moral or common sense basis to oppose the treatment of other people's children.
While it was undoubtedly a sincere attempt to be balanced your article is simply another articulation of the anti-cure ideology of those autistic persons who are not subject to forced cures, do not need to be cured and are in fact interfering in the family relationships of autistic children by trying to prevent their parents from treating or curing them.