“The Autism Issue” is a topic rife with controversies today. It’s hard even to speak of an “autism community,” as there are tremendous differences of opinion simply about what autism is and who can speak about it. Dora and Kristina have identified ten topics that have sparked intense and fervent exchanges. We will be addressing additional controversies regularly in the Autism blog.
1. Personhood vs. stereotypes.
Changeling. Shell. Trapped behind walls of autism. Mysterious and puzzling. Incapable of empathy. An excuse to be an asshole. A disease like cancer. Retarded. Unteachable. Lost cause. Idiot. Suffering. Better off dead.
Genius. Savant! Mysterious and awe-inspiring. Awesome at computers. Great at math. Can count anything perfectly with just a glance, just like Rainman. Just like Einstein!!!
Autistic people are alternately demonized or sensationalized, and in either case stereotyped. They are portrayed as a tragedy, the uncommunicative child rocking in the corner, devoid of her humanity. They are set on a pedestal, the brilliant savant who will revolutionize physics but never learn to tie his shoes.
Autistic people are, however, none of these things, they are human beings, complete in themselves, regardless of their level of support needs. And these stereotypes do little more than dehumanize and dismiss their very real personhood. Dehumanization makes it all too easy to justify abuse, neglect, and violation of human rights. If dehumanization of autistic people is to end, autistic people must be considered as people, which means understanding that not everyone with a particular label is going to conform to an assumption.
2. Recovery from autism.
Autism is a lifelong disability that is most likely genetic in origin. Nonetheless, claims that children have been “cured” from autism and have lost their diagnosis have been reported and are often given excessive attention in the media. But focusing on recovery distracts from attending to the needs of autistic individuals in the here and now. Parents may put all their energy and resources into so-called “cures” for autism, instead of focusing on the individual in front of them, and on the educational needs of that individual. Recovery from autism is neither possible, nor desirable.
Kristina writes more on this controversy in Once Upon a Time, I Tried to Recover My Son From Autism.
3. Support vs. cure.
The idea of “cure” is tied to the medical model of disability which holds that a person with a disability is “sick” and needs to be “cured;” some internal flaw has “caused” the disability. This is the perspective still taken by popular culture and many autism organizations.
In contrast, the socio-ecological model of disability holds that there are problems instead in the relationship between the disabled individual and their environment; disability is “caused” by a poor person-to-environment match. This perspective rejects the idea of “cure” as nonsensical (and in some ways offensive) as it does not view disability as a flaw that resides solely within an individual. Instead, this perspective asks, what needs to be done to bring the individual and their environment into better alignment? Sometimes that answer is better accommodations and environmental support. Other times that answer some sort of therapy or other form of self-improvement. The social or socio-ecological model is the perspective taken by the general disability advocacy community and many autism rights activists and self-advocates. Socio-ecological perspectives on disability favor the ideas of acceptance, education, and support as keys to a happy, healthy life.
Socio-ecological Model of Disability: Ability is a dynamic relationship between an individual and their environment.
4. Advocates vs. Advocates.
“Autism advocate” is a tricky term, as people who label themselves as such may have diametrically opposing perspectives on disability, autistic rights, and which issues are critical to address. Those autism advocates who support the medical model of disability advocate for a “cure” for autism. These people often advocate for biomedical research on causes, treatments, and cures.
Autism advocates who support the socio-ecological model of disability advocate for access, acceptance, and support, and may see autistic individuals as a minority group with its own culture within the Disability community. These people may also see autism and disability in general as an important part of biodiversity, often termed neurodiversity. These people often advocate for disability services, accessibility and community inclusion, education and therapy aimed at self improvement, and public education leading to greater autism acceptance.
There is a misconception that any autistic person who advocates for support and acceptance instead of cure must be “high functioning” (see Controversy 5.) and not actually be disabled by their autism. This is definitely not the case.
5. The “autism spectrum.”
How can both a “high-functioning” college student with Asperger’s Syndrome and a “low-functioning,” non-verbal child with self-injurious behaviors both be on the autism spectrum?
The concept of “functioning levels” has always been used as a way to divide the autism community and to compete for limited resources, with some parents saying that their “low-functioning” child is totally unlike an adult with Asperger’s, and that “severe autism” should be considered a completely separate disability. But the very notion of functioning levels is an ambiguous and even amorphous concept. What “high-functioning” and “low-functioning” mean is much less precise than those terms are often taken to suggest. HFA — “high-functioning autism” — is stereotypically associated with being at the “mild” or “Asperger’s” end of the spectrum, and LFA — “low-functioning autism” — with having “severe autism.” But what is “functioning” based on, after all: speech or verbal ability? IQ scores? The ability to appear non-autistic? Academic ability? Adaptive functioning? Just because an individual is of above average intelligence, gets into college, and so forth, does not mean that that individual might not struggle to have a job, be in a relationship, and live on her or his own. Rather than discredit the experiences of autistic adults as having “nothing” to do with that of a “severely” autistic child, it’s important to see how there are many similarities, in responses to sensory stimuli and in difficulties with communication, and how the concept of the autism spectrum helps our understanding of autism.
6. The so-called epidemic of autism.
In the 1960s, autism was considered a rare disorder that occurred in only about 3 in every 10,000 children In February, 2007, the Centers for Disease Control (CDC) announced the results of two surveys of autism spectrum disorders covering 22 states. Using the newly-funded Autism and Developmental Disabilities Monitoring Network (ADDM), CDC researchers found an average rate of 1 in 150 children with an autism spectrum disorder, with New Jersey at the top, with a rate of approximately 1 in 100. To some, these figures suggest an epidemic — but just because it feels like there is “so much more autism,” does not mean that there is an actual increase in the number of autistic persons. While some claim that there must be “something” — like a vaccine, or something in the environment — that has caused this so-called “epidemic,” some other reasons for the increase in the prevalence rate are: (1) greater understanding of autism; (2) earlier diagnosis of children; (3) changes in the criteria used to diagnose autism; (4) more accurate methods to count cases of autism; and (5) changes in society and culture about disability and difference, and acknowledging and accepting these.
7. Genes vs. environment.
More and more scientific evidence points to genetics as the cause of autism, though scientists note that it’s likely there is no single cause. A number of popular theories about what causes autism exist in the public mindset, and include factors such as parental age (of the father as well as of the mother), TV, the levels of precipitation in the area, ultrasounds, and poisoning from heavy metals, and this list only seems to grow. In recent years, the hypothesis that vaccines or something in vaccines, such as mercury via the preservative thimerosal, can be linked to autism has received a great deal of attention, due in no small part to the efforts of various organizations who advocate for so-called “vaccine safety” and who claim that autism is actually “mercury poisoning.” The scientific evidence continues to refute these hypotheses, and also to suggest that different combinations of factors can be linked to different manifestations of autism spectrum disorders.
In the end, focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today, such as housing, employment and long-term supports for individuals who will need such.
8. Fear of vaccines.
If there’s no valid scientific evidence to support a link between vaccines and autism, why is there so much talk about such a link? And why are so many parents of young children worrying about vaccinating their children, instead of worrying about the serious infectious diseases their children could contract (such as measles, which has been reported to be at its highest levels in the US this year) if they do not receive their vaccines? Consider some of the most-discussed topics about autism in 2008: the case of Hannah Poling, a Georgia girl whose “symptoms of autism” were aggravated by vaccines, as conceded by the US Federal Court of Claims in April; celebrity Jenny McCarthy’s “campaign” to “green our vaccines” and make vaccines “safe,” the approximately 5000 lawsuits in the “Vaccine Court” filed by parents claiming that vaccines or something in vaccines caused their child to become autistic; the charges of questionable medical ethics directed towards Dr. Andrew Wakefield, whose 1998 announcement that he had found a link between the MMR vaccine and autism set off a public health scare about vaccines.
The notion that vaccines are somehow linked to autism has distracted energy and resources from other concerns in the autism community, such as issues of education, housing, and employment, with so-called “pro-vaccine safety advocates” continuing to keep the issue in the public consciousness in the face of more and more scientific studies refuting a link.
9. Social programs in theory vs. effectiveness in practice.
There are a number of social service programs available for people with an autism spectrum diagnosis, including vocational rehabilitation, independent living services, special education services, social security, and programs for people with developmental disabilities. These programs target a wide range of areas such as employment, education, housing, self care, and recreation. In theory, this sounds great, but in practice, such services are often wrought with controversy. Just a few of many unanswered questions are:
- Eligibility: Are the people who need services actually getting them? Do the people in charge of services have sufficient understanding of autism to determine eligibility?
- Accessibility: Is the process for getting and managing services accessible? Are the services given appropriate, safe, and accessible?
- Inclusiveness: What is inclusion really, and should it be pursued at all cost? Are the necessary services for learning or survival available to people in all socio-economic brackets?
- Effectiveness: Do services focus on life long health, or only provide crisis management? How can limited funds be used most efficiently and effectively?
- Individualization: It’s often said that “if you’ve met one person with autism, you’ve met one person with autism.” Are services such as Individualized Education Plans really being tailored the students’ particular learning needs, or are service organizations tied up instead in the rigidity of their own bureaucracy?
10. Who can represent autistics?
While it would be unheard of to exclude direct representatives of a given minority in an organization for racial or ethnic minorities–or indeed for people with a physical or sensory disability–many autism-related organizations do not include individuals with an autism spectrum diagnosis in their administration or policy. Some common arguments against inclusion are that autistic people wouldn’t be mentally capable of representing their own interests, that any autistic person who would be capable must not be “really” autistic, or that it’s not possible to find an autistic person who has the “right” ideology for the organization. Other organizations will include autistic people in token ways, such as allowing them to design fund raising material, but never in ways that have real power. Still other organizations simply continue to exclude autistic representatives without any explanation at all. Much of public policy made concerning autism issues is done without any input at all from autistic individuals.
While the contribution of parents and service workers is indeed relevant and valuable, the fact is that autistic people are currently in the position of “taxation without representation,” “something about us without us,” and systemic exclusion from having power in their own lives.