Nothing About Us Without Us
We advocate for greater support and understanding for adults and children on the autism spectrum. Within the broader context of the disability rights movement, ASAN seeks to bring about more accommodation and acceptance of neurological diversity in our society. We believe that self-advocacy is essential to this process and that there must be meaningful involvement of Autistic individuals in making policy at all levels: Nothing About Us Without Us.
Inclusion and Respect for All
Every person is worthy of inclusion and respect, whatever his or her support needs may be. We view the Autistic community as one community, encourage self-advocacy among all people on the spectrum, and also work with parents and other allies who share our goals. In the interest of ensuring for everyone the rights of communication and self-determination, ASAN works to change public perceptions of autism and to dispel old myths and stereotypes that have led to discrimination and abuse.
Equal Opportunity at School and Work
As with other minority groups, an inclusive educational system is a vital part of changing social attitudes and creating a culture in which all people are seen as equal participants in society. Thus, ASAN seeks to reverse the unfortunate trend toward segregation of Autistic children in the schools, and we are working to create a more accommodating environment on college and university campuses. Autistic children and adults often are targets of abuse and bullying, in the schools and elsewhere, and effective action must be taken to put an end to this mistreatment. Stronger efforts are needed to enforce the equal employment opportunity laws and to make employers aware of their obligation to provide workplace accommodations.
Services and Supports
More funding is needed for community services and supports, which are vital to enabling people with disabilities to participate in society. Research priorities should focus on areas that have the most potential to improve the daily lives of Autistic people, such as communication and assistive technology, best practices in providing services and supports, and educational methodologies. Health care disparities need to be remedied and beneficial therapies made more widely available; however, the use of scientifically unproven treatments and those that focus on normalization rather than teaching useful skills should be discouraged.
Each of these policy positions is discussed more fully below.
Disability Rights and Neurodiversity
Acceptance of Difference
The disability rights perspective within the Autistic community is represented in the neurodiversity movement, which promotes social acceptance of neurological difference as part of the broad landscape of human diversity and seeks to bring about a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society, thus allowing all people to live up to their potential.
Breaking Down Barriers
ASAN regularly works with other disability rights organizations to advance public policy initiatives that focus on improving quality of life and ensuring full access in society. In accordance with the social model of disability, we recognize that disability need not be a tragedy or a misfortune and that barriers to full participation in society often arise not from physical or mental differences, but from cultural attitudes that stigmatize certain types of people as less worthy of inclusion than others. Thus, a person becomes disabled not as an inevitable result of his or her condition, but rather because society has not accommodated his or her needs sufficiently to enable equal participation in the community. Such barriers to inclusion can and should be dealt with through the political process, in the same way that civil rights advocates have worked to break down prejudiced assumptions and exclusionary practices that harm other minority groups.
Respect and Self-determination
Of course, there are real challenges associated with autism and other neurological differences. The social model draws a distinction between the underlying condition, which exists regardless of cultural attitudes, and the disability, which consists of everything that goes into society’s representation of the condition. In advocating recognition of the civil rights and dignity of Autistics and others with disabilities, we are not overlooking the existence of such challenges. Rather, we are seeking to create a world in which all people can benefit from whatever supports, services, therapies, educational tools, and assistive technologies may be necessary to empower them to participate fully in society, with respect and self-determination as the guiding principles.
Self Advocacy and Representation
Taking Control Over Our Lives
The term “self-advocacy” has multiple meanings. It can refer to an individual’s efforts to take control over his or her own life, be it at home, at school, at work or in relationships. It can also refer to the efforts of a community to take control over the public policy, media, social, societal, cultural and other broader conversations and actions about that community, including activities such as lobbying legislators, engaging in protests and interacting with the media. ASAN works to advance both types of self-advocacy. ASAN’s work is oriented toward improving the representation of the Autistic community in the public conversation about autism and improving the reach of the Autistic community to make it accessible and meaningful for all Autistic people.
Public Policy Involvement
Significant representation of self-advocates in the policymaking process is essential to ensure both the legitimacy of the process and the creation of the most effective possible public policy strategies. As with any community, we know our own needs best; however knowledgeable the experts may be about autism issues, we who are ourselves on the autism spectrum necessarily have more awareness of the issues that face our population. To set policy that affects our futures without consultation and participation by Autistic individuals is unacceptable. We have a right to have our voices heard in the national conversation about us.
Leadership and Decision-making
Those who wish to support Autistic people and our families, and to improve society’s understanding of our needs, should ensure that the organizations to which they contribute are structured in such a way as to provide for significant self-advocate representation. Organizations that do not include any Autistic individuals in their leadership and decision-making processes are deeply unrepresentative of the community and damaging to those they purport to represent. Advocacy efforts should be conducted for the benefit of, and always with the meaningful involvement of, the Autistic population as the primary stakeholders.
The Autistic Community and Allies
We Are One Community
ASAN does not consider any neurological type to be superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of his or her diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. When ASAN refers to the Autistic Community, we include all people on the spectrum regardless of their diagnostic category or their support needs.
In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.
Working Together with Allies
ASAN’s allies include many family members, professionals, educators, friends, cross-disability advocates, and others who are not Autistic but who support our struggle to overcome ignorance and to ensure equal rights and opportunities for the Autistic population. We seek to promote understanding and cooperation among the various groups that share concerns about how Autistics and all people with disabilities are treated in our society, working toward the goal of human rights for all people regardless of neurology or disability.
Changing Perceptions of Autism and Disability
Ending Myths and Stereotypes
Many of the barriers faced by Autistics and others with disabilities arise not from the condition itself, but from prejudice and stereotypes that have the effect of excluding us from full participation as citizens with equal rights and responsibilities in society. ASAN seeks to bring about a more accurate understanding of the autism spectrum and to dispel myths and outdated attitudes that harm us and our families. Although we generally support raising awareness of autism and disability issues, all such efforts must be done with us, not against us.
Unethical Fundraising Tactics Must Stop
Some organizations rely on fear and pity as fundraising tactics, invoking primitive changeling imagery to characterize Autistic adults and children not as human beings but as burdens on society that must be eradicated. These exploitative and unethical practices devalue people on the autism spectrum and others with disabilities, making our lives and those of our family members more difficult. When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.
Bringing About a More Respectful World
Like any other minority group, we have the right to respectful and equal treatment in all aspects of society. Although offensive depictions of autism and disability are not the only barrier that must be confronted in the struggle for inclusion, quality of life, and opportunity for all people with disabilities, the issue is a significant one because cultural perceptions shape the reality of our lives. By challenging harmful and inaccurate representations of autism and disability, we can advance a broader and more effective agenda for our community as we seek to bring about a world in which all people with disabilities are fully included and accepted in school, at work, and in society at large.
Family Law and Relationships
The Right to Have a Family
One of the most pervasive forms of discrimination against people with disabilities has come from those who use stereotypes and faulty science to deprive us of the right to have a family, to marry, and to raise children on an equal basis with all other citizens. Although the eugenics movement and the resulting involuntary sterilization of numerous people because of their disabilities may be the most widely known example of the harm caused by such attitudes, the closely related prejudice that those with disabilities are inherently unfit as spouses or parents has caused many Autistics and others to be deprived of parental rights and discriminated against in divorce and child custody cases, based on stigma and stereotypes rather than evidence.
Opposing False Claims
In recent years, some psychologists and others have for reasons of personal financial gain promoted false claims that Autistics are unsuitable for family life and inevitably cause harm to romantic partners and family members. These claims have no support whatsoever in the scientific literature. In some relationship workshops based on these ideas, the participants are encouraged to blame their Autistic partner for problems in the relationship and to buy books, counseling sessions, and other products and services that are presented as necessary to their emotional healing. These ideas have led to attempts to influence social workers and family law courts to remove custody of children from Autistic parents and to discriminate against Autistic adults in other family law settings.
Ending Discrimination in Child Custody
Because there are so many prejudiced ideas about disability that affect family life and relationships, Autistic victims of domestic abuse are likely to fear discrimination and the possible loss of their children if they seek protection from the abuse. They may remain silent even when their lives are in danger. Laws prohibiting discrimination in child custody matters are needed, along with educational efforts to dispel unfounded myths and prejudices. This will ensure that Autistic parents and other parents with disabilities will not have to live with such fears.
Inclusive Education and College/University
Separating Children Is Not Necessary
When school districts maintain segregated classrooms and separate schools for students with disabilities, such as children on the autism spectrum, this is not an educational necessity but instead reflects outdated and exclusionary attitudes. How children are treated in the schools often mirrors how they will be treated in later life. As with other minorities, segregated school placements lead to a segregated society, whereas inclusion in the earliest years promotes increased opportunity and greater understanding of differences for all involved. A society that separates its children is likely to maintain those separations indefinitely, reinforcing attitudinal barriers to inclusion in all aspects of life.
Inclusion Lasts a Lifetime
Educating students with disabilities on an equal basis reflects the fundamental principle of modern democracy that all citizens deserve the right to claim a place in mainstream society. There are many options for inclusion available for Autistic students. Although inclusion encompasses more than simple integration and requires the hiring of additional teachers and other professionals who are knowledgeable about the specific educational needs of Autistics and other neurological minorities, the costs are minimal when compared to the impact of a lifetime of exclusion and underemployment. Providing an inclusive educational program is not only the right thing to do from an ethical and long-term societal perspective; it is also considerably less expensive for the taxpayers than building new segregated facilities, as some school districts have done in recent years.
Services for College Students
Inclusive secondary education should include making college planning services available. Contrary to popular stereotypes, many Autistics can and do attend colleges and universities, as do other students with disabilities. Educators and administrators have a responsibility to become more aware of the existence and needs of these students, providing appropriate disability services as needed to enable Autistics and others to achieve success both on the college campus and after graduation. Prompt and effective action to prevent discrimination on the basis of disability is also needed, such as by including disability awareness information in diversity training programs and responding quickly when incidents occur.
Preventing Abuse, Neglect, and Bullying
Taking Action to Stop Abuse
Although most educators who work with Autistic children and others with disabilities are well-meaning professionals who would never intentionally harm a child, there are some who are poorly trained or temperamentally unsuited to the job, and abuse does occur. Because of ignorant stereotypes about Autistic children, such as the persistent myths that they do not feel pain or do not have emotions, school administrators and prosecutors may not take reports of abuse as seriously as if the victims were other children. This needs to be recognized for what it is—a discriminatory failure to afford to a minority group the equal protection of the law—and dealt with accordingly. These concerns also apply to the investigation and, when appropriate, prosecution of abuse and neglect by caregivers.
Harmful Practices Must Be Banned
Abusive and dangerous practices have found their way into some schools and other facilities under the guise of educational methods or psychological treatment. These include aversive interventions, a term that refers to the application of pain as a means of behavior modification, which was long ago recognized as barbaric and made illegal in other contexts such as prisons. As a result of aversives and abusive restraint practices, every year students and adults in institutions are injured or even killed. ASAN advocates the passage of both federal and state legislation fully banning the use of aversives and banning non-emergency restraint and seclusion.
Bullying Must Be Stopped
Bullying is a persistent problem that can do significant damage to its victims. Students on the autism spectrum often are particularly vulnerable to bullies because of social and behavioral differences. As a result of bullying, many Autistic students face serious emotional and/or physical injury if they remain in their home schools, and they may end up being transferred to segregated placements in a misguided attempt to protect them. Such a response, which wrongly assumes that bullying is inevitable, reflects an unacceptable failure to meet the responsibility of ensuring a proper school environment for every child. This can and should be addressed through the political process, by enacting and sufficiently funding the enforcement of strong anti-bullying legislation.
Employment and Accommodations
Although many Autistic adults are both willing and able to work, there are significant barriers confronting us in the job market. Some of these barriers have to do with characteristics of autism that require accommodation in the workplace, such as sensory hypersensitivities that can make fluorescent lights painful, or auditory processing issues that can cause difficulty with noisy environments and telephone conversations. Other barriers arise from lack of supports in the community, such as inadequate public transportation restricting job opportunities for those who cannot drive. The Autistic population also faces widespread employment discrimination as a result of ignorance and stereotypes about autism, other prejudices related to differences in speech and body language, and an interview process that relies heavily on spoken communication even if a high level of verbal fluency is not necessary to do the job.
Enforcing Equal Opportunity
Because of these barriers, many Autistic individuals either cannot find work, are underemployed in jobs that do not make good use of their skills, or face unnecessary stress every day in the workplace because accommodations have not been made for their needs. Employers often are unaware of the practical details of how to accommodate workers with disabilities and mistakenly assume the costs to be much higher than they actually are. Governmental efforts to enforce the equal employment opportunity laws should include providing thorough and accurate information to employers on how they can accommodate Autistic workers, with a clear explanation of the employer’s legal obligations in this process. When employers fail to meet their obligations, legal action may be necessary, and sufficient funding should be provided to ensure thorough agency enforcement efforts.
Services for Autistic Workers
Transition assistance programs should be provided to help people on the autism spectrum who are entering or re-entering the workforce. Some individuals may need job coaching and other services and supports as they adjust to a new position. These programs benefit both the workers and the community as their clients are enabled to become productive taxpayers. Agencies providing such services should be careful to avoid stereotypes of what kinds of jobs Autistic workers can do; they should look upon each client as an individual and should try to help the client to find a job well matched to his or her particular abilities and interests. Other services and supports that are not directly related to employment but that have a significant impact on workers with disabilities, such as public transportation, should be made more widely available.
Community Services and Supports
More Public Funding Needed
The United States Supreme Court has declared that every American with a disability has the right to live in the most integrated setting. This requires that sufficient funds must be made available for services and supports to enable community participation. Although individuals who have significant support needs generally prefer to receive services in their own homes and in the community, the lack of adequate funding for such services has forced many people into nursing facilities and other institutions. Along with other disability advocacy organizations, ASAN calls for prompt government action to fund long-term services and supports to allow people who are at risk of institutional placement to remain in their homes, as well as to enable individuals who are already in such placements to return to the community.
Services Must Be Made Available
These services and supports, such as personal attendant services and assistive technology, can enable people with disabilities to live and work productively in their communities. Further efforts must be made to ensure that Autistic adults are able to gain access to long-term community services and supports. There is a large population of adults and adolescents on the spectrum whose needs are not being met, either because the services and supports that they need are unavailable or because inadequate funding has resulted in extremely long wait lists. In addition to lack of sufficient funding for services and supports in general, the Autistic population often faces structural barriers to access that arise when disability programs are designed without adequate understanding of our needs.
Planning for Access
Policymakers should be aware of the particular characteristics and needs of adults on the spectrum when planning community living options. Autistic adults may be unable to access some kinds of supports if they are not made available in ways that meet our needs. Many of us have difficulties with certain kinds of sensory environments, and these difficulties need to be taken into account when planning and implementing the provision of community services and supports. Significant representation of self-advocates in the policymaking process is essential to ensure both the legitimacy of the process and the development of effective public policy strategies for community living.
Research and Data Collection
More Funding for Practical Purposes
More research is needed in areas such as communication, service delivery, education, and community supports that will have practical applications for improving the quality of life of Autistic people and our families. Autism research grants in recent years have gone mainly toward genetic and other causation-oriented studies with potential eugenic consequences, while studies focusing on educational practices, assistive technology, best practices in providing services and supports, and effective supports for community inclusion have received far less funding. These skewed priorities are unacceptable to the Autistic community and cannot be allowed to continue. It is a grave human rights concern that many Autistic individuals experience significant barriers to communication and to full participation in society because of inadequate funding of research on assistive communication technology and educational methods.
Community Based Research
ASAN supports a Community Based Participatory Research (CBPR) or Participatory Action Research (PAR) approach to research, in which members of the community are full participants at every stage of the research process. Academics, service professionals, and the Autistic community work together to conduct research that improves the lives of people on the spectrum. ASAN is currently serving as a Community Based Organization for two CBPR projects. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspire.org) is committed to the values of inclusion, respect, community relevance, and accessibility, and conducts ongoing studies on topics such as healthcare and well-being. The AUCD Partnering Project (http://www.aucd.org/template/page.cfm?id=426) seeks to better understand the relationship between interpersonal violence, health, and disability for individuals with developmental disabilities.
Privacy and Informed Consent
Data collection for research purposes needs to be conducted with the rights of the individual as the foremost priority. Researchers should take care to ensure informed consent and protection of privacy when conducting studies that involve personal information. Although the autism registries that have been created in some states can help to improve the planning and delivery of services, they also raise obvious concerns about potential misuse of information and perpetuating stigma. Strong privacy protections are necessary, and offensive language that characterizes Autistics as defective or burdensome must be avoided.
Therapies and Health Care
Access to Health Care
Health care must be made more accessible to consumers on the autism spectrum. Disparities in health care significantly affect the lives of people with developmental and other disabilities. Barriers to obtaining health care include lack of insurance coverage, limited availability of some therapies and assistive devices, and difficulty understanding and navigating complex service delivery systems. Health care reform efforts should focus on increasing the number of people with disabilities covered by health insurance and broadening the service options available to people with disabilities.
Teaching Providers About Our Needs
Some health care providers do not have sufficient familiarity with the needs of our population. They may fail to recognize and treat a serious medical condition because they mistakenly assume its symptoms to be part of autism, or they may provide unnecessary treatments for nonexistent ailments based on myths about autism. Mandating courses on autism and other developmental disabilities in the continuing education requirements for health care providers can improve awareness of our needs. Professional licensing boards should take prompt action against unethical providers who exploit clients by marketing products and treatments that lack any valid scientific basis.
Respectful Use of Therapies
Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.