~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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14 March 2009

World Autism Interviews: Autistic Bitch from Hell/Whose Planet Is It Anyway?

Whose Planet Is It Anyway?

Interview with abfh

Autistic Bitch from Hell writes the blog Whose Planet Is It Anyway? (created in 2005). Abfh has always enjoyed both reading and creative writing, in addition to pondering issues of civil rights and cultural expectations.


E: What is the driving force behind the reason you decided to create your blog Whose Planet Is It Anyway?

ABfH: When I started reading forums and other websites in the autistic community, I was concerned because many of the people posting seemed to accept without question what they had been told about themselves -- that they were disordered and incapable. I wanted to get them looking at things from a broader historical perspective and to make them aware of the parallels between the "war on autism" and prejudice against other minority groups. I wanted to motivate them to develop more self-respect.

E:
Did you ever expect Whose Planet Is It Anyway? to become so popular within the Autistic Community?
ABfH: No, at first I thought of the site as a place to put sarcastic rants that were too rude for the forums. I didn't do much to promote it, other than joining the Autism Hub in early 2006.

E: What is the point of autistic self-advocacy and why is it needed?

ABfH: Unless a minority group advocates for itself and asserts the right to define itself, others will define the group according to whatever ignorant stereotypes happen to be floating around at the time. Self advocacy is particularly important for groups such as autistics who have been widely stigmatized as incapable of speaking for themselves, in order to refute that false perception. In part, autistic self advocacy is a subset of the broader consciousness-raising process that takes place through identity politics, making people aware of stereotypes and oppression. It also recognizes the importance, on a personal level, of self-determination and living an authentic life.
E: In a nutshell, what is the Autistic Community?

Also, what do parents of children who are on the autism spectrum stand to gain from interacting with the Autistic Community?

ABfH: I'll answer these two questions together because I belong to a multigenerational autistic family and therefore do not see the two groups as being entirely separate. In much the same way as any other minority community, the Autistic Community consists of people who have autistic traits and who are part of a shared culture. It is an international community, and much of its culture has developed on the Internet. As I see it, autistic traits and membership in the community should be defined and controlled by the community itself, rather than by the DSM or any other external authority. Thus, I believe that it should be possible for parents who have some autistic traits and who choose to identify with the community to be welcomed as belonging to the "tribe," even if they do not fit the DSM criteria.

As for parents who do not have autistic traits and who are unfamiliar with autistic culture, they can gain more understanding of their child's needs and characteristics by interacting with the Autistic Community. I have found that most autistic adults who post on forums and blogs are willing to answer parents' questions and to offer advice. Some parents also may gain more self-awareness by taking part in such a dialogue, to the extent that they have previously unrecognized autistic traits.

E: Some people say the Autistic Community, much like the Deaf community, seems angry and bitter. The anger, however, stems from repeated experiences of deeply rooted injustice and atrocity. That noted, please share the most positive and touching experiences that you have gained from being a part of the Autistic Rights Movement.

ABfH: I don't agree with this characterization. Most of the people I have encountered in both communities seem to be interested in explaining their perspectives and bringing about productive changes in society, rather than staying stuck in an angry and bitter mindspace. Certainly there are times when anger is a reasonable response to injustice and a motivating force in working for change, but I would not describe either the Autistic or the Deaf community as angry and bitter.

I have found my involvement with the Autistic Rights Movement to be very positive overall. Sometimes I get e-mails from autistics who tell me that my blog has inspired them to advocate for themselves, as well as from parents who say that they are better able to understand their children's lives. One mother told me that after she came across my writing, she realized that instead of obsessing about cure and trying to change her son into something he was not, she could give him real and meaningful help by working to end prejudice and discrimination. She then went back to work teaching autistic children and others with disabilities, for many of whom, she wrote, it was a new experience to be taught by someone who saw them as capable and worthwhile people and who encouraged them to advocate for themselves.

E: Some parents of autistic children think the Autistic Community is against therapies such as occupational or speech therapy. Is this true? What about the use of assistive devices like communication boards or Augmentative and Alternative Communication devices?

ABfH: This is a complete misconception. I have never come across anyone in the Autistic Community who was opposed to occupational therapy, speech therapy, assistive devices, or any other means of improving a child's skills, provided that the validity of the child's existence as an autistic person was acknowledged and respected. There is a controversy about behavioral programs such as ABA, which has a history of abuse, lack of solid research, and teaching conformity for its own sake. To the extent that behavioral programs are used for meaningful educational purposes, without abuse or coercion, and do not deny the validity of autistic identity by seeking to suppress autistic traits, they may find some support in the community.

E: Please explain the difference between meaningful intervention for autistic children and adults as opposed to something like a DAN! approach.

ABfH: The word "intervention" has, to some extent, negative connotations of urgent action to change a harmful situation. Those who seek to cure autism generally believe that it is a medical condition in need of intervention. Because there is really no such thing as a cure for autism, they resort to various alternative remedies based on unsubstantiated medical claims. A meaningful approach, in contrast, recognizes that autism is a developmental condition and seeks to improve communication and other skills. In this context, working with autistic children and adults consists of educating them in accordance with their natural developmental pattern, rather than trying to "intervene" to change that pattern.

E: Please offer come important Autistic Community etiquette tips for a parent who is supportive of our community yet is unsure of how to proceed.

ABfH: A person who wishes to be supportive should consider how others wish to be spoken of and should respect their preferences. For example, there is a controversy about the use of person-first language; many people in the Autistic Community view autism as an intrinsic part of the person and thus prefer to be called "autistic" instead of "person with autism." It is most respectful to address a person in the way that he or she prefers. Also, language that contains negative assumptions such as "suffering from autism" is best avoided.

E: Also, what can be done, by someone who is new to the Autistic Community, to increase education and understanding of the Autistic Rights Movement?

ABfH: As with other civil rights movements, those who wish to take part in educating the mainstream community should speak up when they come across prejudiced statements and should take the time to explain why the statements are inaccurate. Many people who repeat autism stereotypes are not intentionally being hateful and would benefit from being politely corrected as to their misconceptions.

E: Some parents, who have extremely challenging autistic children (often impacted with co-morbid disabilities) say that they feel lost, hopeless, angry, and at their wits' end. Such parents have also been known to say that the Autistic Community does nothing but offer false hope. Anger and injustice aside, what is the most positive, effective, and productive message the Autistic Community can offer to such parents? Is it as simple as saying, "Hang in there"?

ABfH: Parents, as well as teachers and others who work with children, should consider that children tend to live up or down to the expectations of those around them. When a parent feels lost, hopeless, and angry, it is likely that the child is aware of these emotions and that some of his or her challenging behaviors may arise from a perception of being unwanted. Even a child who has little or no speech may be able to understand some of what the parent is saying and may be reacting to the high level of stress in the household. Contrary to the popular myth, autistic children and adults are not unaware of others' emotions, although they may not react to these emotions in culturally typical ways.

Rather than just saying "Hang in there," I would advise parents to be proactive about reducing their own stress levels by making time every day for exercise, meditation, or whatever helps them to feel more relaxed. A child is likely to notice the resulting changes in a parent's body language and tone of voice, even if the child is not consciously aware of what changed. Speaking to the child in a cheerful tone and avoiding negative comments in front of the child can also help to improve the child's mood and behavior. In addition, children should be given enough time to de-stress through regular exercise and play.

E: There are rampant misunderstandings, and autism myths, regarding women on the autistic spectrum. For example, not all autistic women "lack concern for appearance" and play video games all day. Being an autistic woman, what comes to your mind when you think about the myths surrounding us?

It has also been stated that females are more likely to go undiagnosed as opposed to males. Why do you think this is so (or not)?

ABfH: I'll answer both of these questions together because they are related. When stereotypes are applied broadly to an entire group regardless of gender, such as the stereotype that autistics play video games all day, this has the effect of creating gender disparities in how people see the group. In Western culture, women are expected to be concerned about their appearance and are discouraged from playing video games for long periods because that is seen as unfeminine. Guys, on the other hand, are given more slack; if a guy sits around unshaven in an old T-shirt playing video games, people don't think much of it. These gender role expectations affect the behavior of autistic girls and women who, if they are to conform to what society expects of females, must pay attention to their appearance and avoid "masculine" activities such as playing video games all day. Because these feminine gender expectations clash with autism stereotypes, to the extent that an autistic girl or woman has a feminine gender identity and behaves accordingly, she is less likely to be perceived by others as autistic and, therefore, less likely to be diagnosed.

Thank you ABfH for this insightful and informative interview! It is a treat to have a piece of mind from you on aspitude!.

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