What is self-advocacy? For young people with an autism spectrum disorder, parents may have been advocating on their behalf and even making decisions for them while they were growing up. But as we become adults, we need to begin advocating for ourselves and making our own decisions as we are able.
Self-advocacy is speaking up for ourselves, asking for any help we might need, and negotiating for ourselves, as well as making our own decisions. We define what we need and want, and we work to get those things for ourselves. We speak for ourselves, rather than someone else speaking for us.
Examples of this kind of self-advocacy might include: making a doctor’s appointment, asking for needed accommodations at work or school, asking someone to help us with a project or assignment, or negotiating an agreement that works for both of us when we disagree with someone.
Another facet of self-advocacy is advocating as a group in the larger community about the needs and barriers faced by people within the group. This may include educating the public about myths and stereotypes, political action such as writing letters to legislators, or working to make community services more supportive and accessible.
The first type of self-advocacy focuses on the self and learning how to get one’s own needs met. The second type of self-advocacy focuses on changing the community or society in some way.
Leadership by people on the autism spectrum
In keeping with the self-advocacy focus of this organization, leadership is structured to put people with autism in charge.
To ensure that member-driven self-advocacy focus is maintained, our bylaws stipulate that at least 51 percent of the board of directors must be people who are on the autism spectrum. Both the board chair and vice-chair must be on the autism spectrum.
We believe that the voices and perspectives of adults with autism should be included in decisions and discussions about issues that affect them. This is why we have chosen to become a human services cooperative rather than a more traditional social service agency. The Illinois Association of Microboards and Cooperatives defines a human services cooperative as a non-profit organization created by three or more unrelated individuals (or their families) who come together to share services.
Cooperatives play a role similar to traditional social service agencies, but with a major
difference: governing authority and responsibility are placed entirely in the hands of members – the individual people who are served and/or their personal representatives (typically family members). As a result, the cooperative model remains true to the needs of the people they serve, because the people served are making all of the decisions about programs, services, staff, and other activities.
A cooperative can engage in a variety of activities that support its members. A few examples of things a cooperative might do include: offer regular support group meetings, plan recreational activities for members and their families, hire someone who can help members find customized employment or explore creative housing options in the community. In working together, a cooperative can generate resources above and beyond government offerings.
Role of parents and other family members
Because of our self-advocacy focus, we do try to encourage people with autism to assume leadership roles in the organization. This allows us to build decision-making skills that will be useful in the workplace and in the community. But parents and other family members are also welcome. Our bylaws allow for parents and other family members to become “associate members” of our group, and we welcome family members to take part in our companion life skills training sessions, which run concurrently with our monthly support group meetings. Parents and other family members are also welcome to serve on our board of directors, volunteer for any of our committees, and participate in recreational activities and other Puzzle Solvers events.
Relationship to the larger community
Puzzle Solvers is an independent group and is not affiliated with any other local or national autism/disability group. However, we are working to develop positive, cooperative relationships with other community groups.
Our organization does not duplicate or compete with other autism-related or disability-related organizations in the community. While there are several very good services for children and adolescents with autism, and a support group for parents of younger children, there is no other group specifically for adults who have an autism spectrum condition.
We encourage other organizations to help us by publicizing our group in their newsletters, inviting us to their organization or board meeting to talk about our group and answer questions, distributing flyers, letting us have a display or table at public events, and most importantly, getting the word out to anyone they know who might benefit from our group. People from other organizations who are supportive of our mission are also encouraged to become “affiliate members.”
It is also hoped, eventually, that members of the support and self-advocacy group will be invited to serve on boards of directors or as advisory committee members of autism organizations, or take part as contributing members of these groups in some capacity.
Social model of disability.
The social model of disability, based on a definition by the World Health Organization, identifies systemic barriers as the main factors in disabling people. Examples of such barriers include inaccessible buildings, negative attitudes that result in prejudice and discrimination, and inadequate support for individuals with disabilities. The social model is held up as a contrast to the medical model of disability, which focuses on individual “deficits.”
Proponents of the social model argue that while physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, many of these do not have to lead to disability unless society fails to accommodate and include people regardless of their individual differences.
Strengths-based, rather than deficit-based, approach.
At this time, “interventions” with people on the autism spectrum tend to be rather relentlessly deficit-based. That is, everything is centered around “fixing” perceived “deficits.” While lip service may be paid to the idea that autistic people may have some strengths – and clinicians may even be able to list one or two token strengths – the discussion often very quickly reverts to deficit mode.
We believe the focus should be strengths-based as opposed to focusing only on perceived deficits. We recognize that autism may give us many strengths, including the tendency to be very honest, loyal and rule- or law-abiding; an eye for detail; the ability to persevere; and great amounts of knowledge about subjects of interest to the individual. Some people may have developed good “compensating” or “masking” or “coping” or “passing” skills. For example, a person who has difficulty with verbal communication may have developed very good written communication skills.
While we don’t try to romanticize autism or pretend that problems don’t exist, we do try to be fair and balanced. That means spending at least as much time focusing on what’s right as we spend on what’s wrong.
Critical evaluation of societal norms
One of the things advocacy-oriented providers do is encourage critical evaluation of societal expectations, social rules and norms. We believe it is important to help people distinguish between normal and healthy. Normal simply means the norm, which may or may not be healthy and should not be confused with right or wrong. For example, it is all too normal to tell little white lies, to say things we don’t really mean, but is it healthy? The point is, if the goal is “normal,” then the autistic person is seen as the one who needs to change their behavior or do most of the adjusting. If the goal is “healthy,” this is something for both neurotypical and autistic people alike to aim for.
It is also important to distinguish between healthy guilt and toxic shame. Healthy guilt says, “I made a mistake. Toxic shame says, “I am a mistake. Who I am as a human being is wrong.” Unfortunately, people with disabilities get the latter message in a million different ways.
Systems approach to problem-solving.
We avoid the “identified patient” syndrome or “designated patient” mentality common to some therapy approaches – whether it’s blaming the parents for a son or daughter’s autism, or whether it’s blaming the autism itself for all the problems occurring in a relationship or a family. That is, we don’t assume all the problems in a relationship are caused by the person with the diagnostic label. Expecting someone to accept the role of Identified Patient is scapegoating! We want to get away from the “I’m okay, you need a make-over” identified patient stance and deficit model.
Instead, we take a “systems theory” approach. In systems theory, problems – where they exist – reside in the relationships between ourselves and other people, rather than in one of the individuals, and when there is conflict, we believe that both sides need to look for their part in the problem. And rather than look for someone or something to blame, we prefer to stay in the solution.