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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22 March 2009

World Autism Interviews: Isaac Dealey/Dallas, Texas

Isaac Dealey was born in Dallas, Texas. He has been working in the software engineering field since 1994. He is currently an Adobe Community Expert for ColdFusion. Isaac is building a new company called Autelligent Laboratories. Check out Isaac on Twitter: (Twitter/datafaucet).

Interview with Isaac

E: Please tell us about Autelligent Laboratories.

Isaac: Currently, the employment rate for those of us diagnosed with Asperger syndrome is less than 20%. What this means is that we have a population of people who want to work, who are perfectly competent, yet due to the challenges of our disability we aren't working. Addressing social challenges is important for all of us, however, there is another side to autism in which we are naturally better fit for certain kinds of work.

To borrow an old analogy, we want to put square pegs in square holes. Also, work is very fundamental to a positive and productive lifestyle. Over the years, there have been numerous studies showing that having a rewarding job improves morale, which in turn, improves physical health and other aspects of life as well.

Autlabs will offer challenging and rewarding technical jobs that will keep employees on their toes and continually learning. We feel that by creating a positive work environment in which autistic people can excel, we will provide excellent value to our clients while showcasing the many talents of our employees. We will also achieve significant strides toward resolving many other issues in the autism community, such as communication challenges and social anxiety.

Tentatively, Autlabs' mission statement is "A workplace that works for everyone," which actually works for our clients as well since we'll be primarily developing business software.

E: What is the driving force behind the reason you decided to create Autelligent Laboratories?

Isaac: I'm a father of three beautiful children. Fundamentally, my first goal is to make the world a better place to live in. On a personal level, I feel that Autlabs is the best way for me to make use of my talents in a way that fills a need that's currently under-served. There are a handful of companies that have started to seek out autistic workers although the ones I've seen are either on another continent or are within an established company. Autelligent will be the first company I'm aware of designed from the ground up to nurture the talents of autistic workers.

E: What are your current goals with Autelligent Laboratories?

Isaac: We hope to achieve sustainable growth over the next five years, as well as to have a small handful of offices. We also hope that as we grow and discover structural and organizational models that work well for us that we'll be able to pass these models on to other companies as well. We don't want to be a monopoly on autistic talent. We just want to learn how to fill the need and give that knowledge back to the community.

E: How can the Autistic community both become involved with and help you with your project?

Isaac: We expect to be involved with the community on and ongoing basis, so we'll have various projects and initiatives in which the community can provide input and help the company grow. We started this from the very beginning by sharing our proposed name to gain public feedback. We also created a survey in which we offered several potential names and let people rate each name on a preference scale. Autelligent was rated highest. Autlabs is currently crowd-sourcing for a company logo. We will be announcing other ways people can help us as we evolve.

We encourage anyone interested in helping us to visit our website and make contact with us. Spreading the word about our organization via blogs and favorite forums, that are receptive to our mission, is also welcome and appreciated. We have particular interest in hearing from potential investors, as well as sales and marketing professionals.

E: What skills should potential employees posses?

Isaac: Skills can be taught. What's more important, if you're interested in working with Autelligent, is that you be interested in computers and software, plus have a strong desire to learn and excel. Software is among a handful of careers in which continual learning is absolutely essential. I've been engineering software for over a decade and I can tell you that I'm still leaning new things regularly--it's a requirement. Everyone who works with Autelligent will find the work both challenging and rewarding.

E: Will Autlabs be able to provide on-the-job training?

Isaac: Yes. Employees will learn a lot about software development during their tenure at Autelligent. I hope as well that all of us will continue to learn valuable communication and life skills in addition to job-specific skills.

E: What roadblocks are you currently facing, as far as establishing Autlabs?

Isaac: None so far. I expect the company's development to be both rewarding and challenging. So far, everybody we talk to loves the idea and is eager to help in any way they can. We're still in the planning stage. We have some intellectual property, and we need to raise some capital for market research and business planning.

We anticipate some potential wrinkles to iron out once we start hiring our sales staff. People who enter into a given profession often have similar personality types. If you know Meyers-Briggs or Kiersey Temperament Sorter this may sound familiar to you. Certain personality types lend themselves well to certain types of jobs. Autistic people tend to have personality types that are literal and detail-oriented, which is compatible with engineering. In my experience, sales professionals tend to be at the opposite end of the personality spectrum and so there can be a bit of a challenge seeing eye-to-eye between engineers and sales professionals. This happens to some extent in every engineering company and we're confident we'll iron those wrinkles out early on.

E: You emailed me privately to express your appreciation after reading a blog of mine geared toward spreading awareness and understanding of uneven skills in autistic people. Please share your views on why this is such an important message to impart on a grand scale.

Isaac: Among the autistic community, it seems reasonably well known that people on the autism spectrum have a tendency to become deeply engrossed in special interests, in a way that allows us to learn those interest areas very quickly and even acquire mastery in a very short period of time. For myself, software has always been one of those areas. And yet, there are other areas in which things that come naturally to other people elude autistics. Quite often, these are social skills that others start learning as babies. So while I'm a professional Adobe Community Expert, I still find "small talk" challenging. We can learn these skills with practice, but to some considerable degree, it's the stigma associated with a lack of social grace that results in autistic employment rates being so low.

So it seems obvious that, if a person is competent to work, especially if they've developed mastery of a skill, then being socially ungraceful shouldn't prevent them from working anymore than being color blind or having a hearing loss. I'm not saying that all autistic people would be great programmers--we're not all interested in software. But if a person is interested in something and they're good at it, they should receive fair compensation for their time, irrespective of their personal challenges.

We can all take a lesson here from the world of classical music. It used to be a commonplace belief that women were not very good players. The maestros didn't believe they were being prejudiced or sexist and also believed their auditions to be fair and objective. Once the maestros began giving truly objective auditions by putting up a screen during auditions, so that the hiring panel could judge the music and only the music, they began hiring a lot of women. Before the screen, women made up only 5% of orchestra players. Today, women are much more fairly represented, making up nearly 50% of orchestras in the States. So these orchestras had been discriminating against women--and others--not deliberately, but rather accidentally because they were unaware that their expectations biased their decisions.

I think we need to consider our values, and "put up the screen" so to speak so that we can focus on what's important. And most specifically for me, that means giving technology jobs to competent and passionate technology workers irrespective of their social finesse.

E: You received a diagnosis of Asperger's a few years ago. How did this change your life?

Isaac: Oh gosh. I think there's a good reason why one of the most popular websites in the autism community today is named Wrong Planet. For the first time in my life, I feel like I'm on the right planet. Having a diagnosis allowed me to learn and truly understand a lot of things that I've struggled with since I was very young. Like work in software engineering, I expect to be learning about autism for the rest of my life. The difference is that before the diagnosis I was totally lost. Now I have a compass.

E: Is anyone else in your family on the autistic spectrum?

Isaac: My father is not diagnosed, but I have a strong feeling that he is on the spectrum. There's a history of engineering in my family. All three of my children express different kinds of behaviors that set off all kinds of warning bells in my head. I have to be careful that I don't let concern drive me and to just continue to support them to achieve the goals they set for themselves. My oldest daughter, Alex, wants to be a writer and has particular designs on working with the Sonic the Hedgehog franchise. Hopefully, she'll get her opportunity.

E: Has your diagnosis been well-received by your friends and family?

Isaac: Yes, my friends and family have all been very supportive. I saw a blog entry from a marketing executive at Adobe that blew me away. Here was a person I had never met, as we knew each other by name only, and she was taking time out to do what she could to help me succeed.

E: Tell us about your city.

Isaac: A friend of mine once said of Dallas, "It's one big string of restaurants." I realized that's a pretty accurate description when I heard a radio DJ later say that we have more restaurants per capita than almost any other city in the U.S. I'm not quite sure what that means for Autlabs, but I guess our employees will be fed well.

There's actually a statue of my great-great grandfather in the city square downtown. George Bannerman Dealey was the editor and later owner of the Dallas Morning News. He did a lot of great things for the community, like opposing the Klan during their heyday. Now it's my turn to give something to the community.

E: What advantages does your city offer as a location for Autelligent Labs?

Isaac: There's a good technology base here in the Dallas Fort Worth area with the telecom corridor in the north Dallas area. It's also a bustling metropolis in general and that's good news for any software company. It means we can find clients next door although I'm sure we'll have clients across the country and around the world as well.

E: For fun, what are some myths about Texas that you would like to dispel?

Isaac: We're not all conservative Republicans. In fact, oddly enough, although the majority of voters in Texas are Republicans, the majority of voters in our state capital, Austin, are democrats. Granted, Austin is sort of a "weird central" much like Portland, Oregon. Go figure.

Click here to visit the Autelligent Laboratories Wiki.

15 March 2009

World Autism Interviews: Melissa Barton/Port St. Lucie, Florida

Alex Barton
Alex with his father and brother
Port St. Lucie, Florida

In May of 2008, Melissa Barton's son Alex, who is on the autism spectrum, was voted out of his kindergarten class at Morningside Elementary School in Port St. Lucie, Florida.

Alex's former teacher, Wendy Portillo, instructed Alex's class to say aloud what they do not like about Alex. Afterward, Portillo led the students in a vote over whether or not they wanted Alex in the class. Fourteen students voted Alex out of the class while two children stated that they would like for Alex to remain. After the vote, Wendy Portillo proceeded to ask Alex how he felt, to which he answered that he felt sad. Portillo then asked Alex where he planned to go given that he had been voted out of the class. When Alex responded that he would be going to the office, Portillo told him that he was not wanted there either. Alex ended up going to see the school nurse. Melissa was not informed of this atrocious act until Alex told her when she picked him and his brother up after school.

That evening, Alex repeatedly spoke these words, "I'm not special."

Melissa immediately filed a complaint with Morningside Elementary's school resource officer. Unfortunately, this case is still unresolved.

This incident has given birth to Melissa's passion for advocating for children on the autism spectrum. Currently, Melissa is helping other parents who are dredging through Florida's unsatisfactory Exceptional Student Education system. She will soon travel to Tallahassee to speak with legislators about Florida's Child Find program, as well as about proposed improvements to the current ESE system.

Melissa states that now is the time to both lobby for and establish effective civil rights for children.

Interview with Melissa

E: Were you having significant troubles with Wendy Portillo prior to the incident of Alex being voted out of his class?

Melissa: I did notice, on several occasions, that other parents were upset with Wendy Portillo for the way she was treating their children. It seems she hid whatever abuse she was doing to Alex, as well as to the other children, behind closed doors. There was also a time when another parent approached us other mothers regarding Portillo's negative and rude behaviors.

During a particular meeting between Portillo and I, she stated her belief that "To spare the rod is to spoil the child." I never dreamed she would actually use a rod or a ruler (refer to police report) on children.

Also, at the Mother's Day classroom play, Portillo was very angry with the children for messing up their lines and she even went as far as to make rude gestures to a mother who was holding a vocal infant.

At a school dance, a parent complained to Portillo about the dirty lyrics coming from some rap songs that were playing. According to this parent, Portillo was very rude and did nothing about the songs being played at the elementary school dance.

E: What was your immediate reaction when you first learned of Alex having been voted out of his classroom?

Melissa: Shock! That day, I happened to pick up Alex and his brother from school early. I met Alex in the cafeteria where he attends after school care. Alex's first words to me were said with a red face: "Fourteen kids voted me out of class today." I asked him for further information, but all he was able to add, at this point, was something about the school nurse. From there, I took Alex's hand and we all walked to the school nurse's office. No one in the office wanted to tell me what had happened. So I approached Wendy Portillo and she boastfully recalled the events of the day. I could not understand how, or even what kind of, a person could put a child through such expulsion.

E: Were other staff members clearly in shock and disagreement over Portillo's actions, or did you immediately feel ostracized by the whole school community?

Melissa: I did have a few teachers and staff members offer consolation. One teacher even said, "Wendy Portillo is the meanest teacher in our school. She can be heard screaming at those kids from outside of her classroom."

I cannot help but to feel that the people who knew Portillo was abusing kids did nothing about it. After it was clear that I was going to pursue justice for Alex, eighteen members of the school staff ostracized my oldest son--who still attends Morningside--and me. The retaliation from the school has, at times, been overwhelming. My instincts are strongly signaling to me that fear is what the school wants. It's quite simple because if I am made to be afraid to come forward then the direct threat to Morningside's "inside" secrets would be eliminated.

E: If you could go back in time, at what point would you have made different decisions for Alex and what would those decisions be?

Melissa: I would never have moved to Port St. Lucie. Realistically though, after my first meeting with Portillo, I would have stopped the conversation between us, went directly to the office, and then withdrew my children from Morningside Elementary. This should have been my response to Wendy Portillo's questioning my husband and me about our religious beliefs (my husband is Jewish and I am a Christian).

E: Though it seems your case is far from over, what advice would you give to other parents who are experiencing similar struggles in regards to obtaining appropriate and fair education for a child who is on the autism spectrum?

Melissa: My advice to parents and caretakers who attend IEP meetings is to know your rights, as well as your child's rights. Also, if you feel you are being lied to then immediately make it known and call the school out on it. If you do not have the time to familiarize yourself with the IDEA laws, then contact either an advocate or an attorney.

Also, document everything! If the school's meeting notes are not 100% accurate then demand that they are changed so that the truth of the meeting is preserved. Don't feel you have to go it alone! In Florida, there is an attorney who will advocate for the cost of only $50 per hour: www.sopplaw.com. Also, check out www.familyadvocacyresources.com.

Give your children's education a fighting chance. The school system is only as involved as parents are.

E: What do parents of children who are on the autism spectrum stand to gain from interacting with the Autistic Community?

Melissa: Support! We must support each other. I have not only been helping other parents, but I've also been on the receiving end of some great advice. I have a great deal of respect for any community of minorities that stands together as a whole that cannot be broken.

E: What are your feelings regarding the Autistic Rights Movement?

Melissa: It is very real, and if you want equal rights for your children then you must stand with us. There is no other way.

E: Were you always supportive of the Autistic Community, or were--or are--you more aligned with organizations such as Autism Speaks and the Autism Society of America?

Melissa: I am just getting my feet wet. Frankly, I have been burnt from Autism Speaks after I requested help from them to support Alex at the Wendy Portillo appeal. I was told by Autism Speaks that they didn't want to muddy their name and that Alex's case is too political for them to get involved with. Autism Society of America has helped me and has also been supportive of Alex's case. Their local chapter, however, has never contacted me.

E: What have you learned from interacting with organizations from both the Autistic Community and the cure-focused community?

Melissa: It's not a lesson that anyone in business hasn't learned. Some organizations are out for their own personal gain, no matter the cost to children and families. On the bright side, there are organizations and advocates who are truly as they claim. Autistic Self Advocacy Network and the Center for Autism & Related Disabilities through Florida Atlantic University are such organizations.

E: What organizations, people, and/or causes, have been the most beneficial in providing you with much needed attention and aid to your case?

Melissa: Autism Society of America responded greatly, as they even tried to find someone to fly in from out of state. The Autistic Self Advocacy Network has also tirelessly made contact with as many people who would listen to them about Alex's case. Plus they have made frequent contact with me and I definitely see ASAN as a true tower of strength.

There is also Paul Sopp, from Sopp Law West Palm Beach, who provides legal representation with no upfront fee. Family Advocacy Resources West Palm Beach has been calling me on a daily basis and has also been making contact with other parents in our community. Kristina Chew advocates for not only her son, but also for other children on the autism spectrum.

E: Some parents of children who are on the autism spectrum think the Autistic Community is, as a whole, angry and militant. There are myths circulating that the Autistic Community has little respect for parents of children on the autistic spectrum. What have your experiences shown you?

Melissa: I have only been treated with respect from the Autistic Community. If anyone questions this, then I have thousands of emails, letters, and cards to prove what I am saying. The Autistic Community has been there for me every step of the way.

Also, a young lady who was going off to school, sent Alex a little bee that sings "Don't Worry, Bee Happy." She also shared her story as an Aspergers child, which provided great insight. We sent a thank you card, but she may never know that Alex actually played that bee's song every night until it stopped working. This young lady's message meant the world to Alex.

E: At this point, what do you feel Alex needs most to be successful in life?

Melissa: Alex needs to understand that being different is not bad. Being the same as everyone else, thinking the same, loving the same, and growing the same is not what I want for either of my children.

E: Do you feel that resources and funding for children and adults on the autism spectrum should go toward cures or toward improving the lives of such individuals in the here and now?

Melissa: Let's work on the here and now! How can we justify a cure when so many children are struggling with the basics in life? Let's fund a better educational program for these kids. A cure will neither change my son's situation nor the situation of any other child who suffers in silence from abuse and discrimination.

E: What message would you like to broadcast to the world about autism?

Melissa: Autism is not the ender of all marriages, finances, and happiness. Fear will take these things from your life far sooner than autism. Autism is a huge spectrum. That noted, my son is not the exact same as another individual on the autism spectrum. The autism spectrum is a beautiful kaleidoscope of differences. To know autistic people is to love them. To understand them is wisdom.

E: If you were granted a private intimate conversation with Wendy Portillo, what are some key things you would like to say to her?

Melissa: To be frank, I would pray for her. Can someone who is so self-serving even understand the pain she caused my child? Would she care more for Alex than she does for herself? I hope that she is humbled, yet also rebuilt as a person.

At a recent hearing, Wendy Portillo expressed tears when her attorney spoke of her punishment, but when she recalled what she did to Alex and his classmates, or how she wrote tally marks on the board for the votes (so that Alex would have a visual) she shed no tears.

There are many Wendy Portillos in this world. How can we cure hate? Can we even cure discrimination? Wendy Portillo may be allowed to teach, but I am hoping that she has grown from her experiences because you never enter and exit someones life without leaving a mark on their future.

E: How can others best help you at this point?

Melissa: Support! Keep supporting the fight to change this system. This case is not just about Alex and the St. Lucie County School Board. This is about all children on the autism spectrum. Not a day passes that I don't think of the pain that so many children suffer because of discrimination. Never give up! Tell as many people that will listen about my son Alex because his fight is your fight.

Thank you Melissa. Best wishes to you, Alex, and to the rest of your family. Let's hope that this case turns out to be a blessing in disguise.
Check out Melissa's blog.

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.

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!.

10 March 2009

Militant Blogging

If you don't ask, you don't get. -Gandhi

The Truth and Nothing but the Truth

I found myself stopping in for a quick look at Donna Williams' blog this morning. I am in complete admiration of her blog design layout. Where was something like that when I was creating Aspitude?

Then I happened upon Political Correctness In 3 Different Autism Worlds, which heavily enticed me.

Basically, Donna writes that there are three distinct political roads one can travel in the world--or worlds--of autism:

  1. Militant Curists
  2. Militant Culturalists
  3. Moderates

Donna goes on to explain that Militant Curists use sympathy, pity, and tragedy while employing words such as: handicap, disorder, disability, abnormal, and pathology. She touches upon Curists' (also known as Curebies) collaboration with eugenicists, as well as states that Curebies often confuse pity with love. Donna explains that Curists view autism as a pitiable, embarrassing, broken obstacle to selfhood, in addition to being a burden to society and families.

Okay, there is truth in the above picture. But not all Curebies are that extreme. Then again, some may well argue that a Curebie is a Curebie and that would leave me with little else to say. That noted, I was a bit nervous to read about Militant Culturists! The very thought of the dark bold term had me conjuring images of rogues crusading about in armor riding in big tanks and holding Neurotypicals hostage (Eeeek!). Knowing that I would most likely fall into the Militant Culturalist group, I was more than curious--though doused with a bit of apprehension and trepidation--to see my description:

‘Militant Culturalists‘.

This group sees autism as a shared culture. It includes those who do reverse prejudice (ie ‘Autistics’ are all linked to Einstein - they think he’s on the autism spectrum along with most of the highest achievers in history) and most in this group refer to ‘non-autistics’ as NT (’neurotypical’ and they use this to mean ‘mundanes’ and call non-spectrum people ‘muppets’ and ‘breeders’). The militant culturalists staunchly drive the Autistic Pride movement and link it to Gay Pride and Deaf Pride. Most militant culturalists are anti treatment. Some are even against adaptations. For them ‘Autistics’ are ‘perfect’ just as we are. These guys don’t use the word ‘disabled’ or ‘disability’. They use ‘neuro-diverse’, ‘differently abled’. They see ‘normality’ not only as ‘relative’ but some see non-spectrum people as having become so superficial and false they are not ‘normal’ nor do they see it as desirable or moral to be ‘like them’. Militant culturalists claim to be diversity-friendly but among them are also supremacists who see themselves as morally superior to non-spectrum people. Many militant culturalists are ’self diagnosed’, sometimes once their child has a diagnosis. Militant culturalists often refer to themselves as ‘Autistics’ and see this as integral to their selfhood. Some go so far as to say that if any aspect of their autism were reduced it would be the same as eradicating their selfhood."

-Donna Williams

After reading the above paragraph, I felt it made me, along with other Autistic Community members, seem like a hardcore group of people on the prowl for a good fight. Seriously, I'm still imagining neo-Cossacks and gangs of autistic militants dressed in black studded leather, riding really loud motorcycles, spitting tobacco on the ground, and slaying Neurotypicals.

I do, however, see the Autistic Community as a shared culture. But I do not participate in reverse prejudice and though there is an honest hard-won place for Gay, Deaf, and Autistic Pride, I do not take it above and beyond the original intent and meaning. I do not think Neurotypicals are mundane. I think mundane people are mundane. Okay, I am anti-cure and eugenics, but I am certainly not against meaningful assistive devices and adaptations. Last, but not least, I am neither a supremacist nor am I self-diagnosed. I suppose I could go on and on, but I am a voice more loud than shrill.

Donna went on to describe herself as a Moderate who is anti-cure, yet supportive of treatment and management for severely disabling health and sensory perceptual disorders. Donna also wrote that "Militant Culturalists often see Moderates as undecided, weak or selling out in the battle to advocate and educate about autism."

All in all, Moderates were presented as being fairly liberal and down-to-earth.

I don't like making unnecessary waves--never have. But I will splash some serious water when it comes to injustice, prejudice, and acts of dehumanization. Does this make me Militant?

Let us turn to Gandhi for a moment. After all, he was an amazing man who employed non-violent civil disobedience (or militant non-violence) to stand up for his community's rights. He even led a violence-free Non-cooperation Movement. Then he swore to speak only the truth and advocated for others to do the same. Gandhi seems nothing like one of Donna Williams' Militant Culturalist, only with the insertion of Indian rather than autistic people. Matter of fact, Gandhi has been coined the Great Soul.

While I agree with Donna that there are divides within the world of autism, I do not think it is quite so easy to define without conjuring a nasty precipice riddled with disservice. Viewpoints are individual, and both viewpoints and individuality carry the power to rigidly define and divide. The voice of truth, however, will never be ignored for long.

If there is a country where cows are sacred, then why can't the disabled, along with the strikingly different, also be respected and revered? As Melissa Barton, mother of Alex Barton, wrote: What a war. Please send reinforcements.

09 March 2009

Don't Speak For Me

Autism Every Day is a film that fails to include the views of autistic adults or the Autistic community. In one scene, a mother describes her thoughts of murdering her autistic daughter while the child is in the room.

If you do not support fund raising that uses fear-mongering and pity to solicit monies from communities, please click here to sign the 'Don't Speak For Me' petition.

World Autism Interviews: IvarTJ/ Norway

Self portraits
Ivar. Isn't he cute?

Interview with Ivar

IvarTJ lives in Stavanger, Norway. He is Asperger's autistic. He is currently going to school and has a passion for website development. Ivar is attending "Videregående," which is Norwegian for upper secondary school, which also simply means high school in English. Click here to visit Ivar's blog site called A-spies HQ Norway.

E: Tell me about your city.

Ivar: The city I live in is called Stavanger - at the southwest coast of Norway. Because of the city's history with the petroleum industry it is sometimes called the "Capital of Oil" in Norway.

E: How old were you when you received an Autism Spectrum Disorder diagnosis?

Ivar: I got a diagnosis of Asperger syndrome when I was around 13 years old.

E: Is anyone else in your family on the spectrum?

Ivar: No one else has an official diagnosis that I know of, although I'm not entirely knowledgeable as to what is supposedly "normal" behavior - so I probably wouldn't know for sure whether there were anyone else (without very noticeable disabilities).

E: How do families, and people in general, go about obtaining a diagnosis in Norway? Is the system easy to use?

Ivar: I'm not quite educated about the system in Norway or anywhere else. Though I've got the impression that it is more normal to see a government-paid psychologist for a diagnosis rather than seeing a (medical?) doctor as I've got the impression people do in the US - though I suspect someone may correct me on this one. It is generally typical for things like this to be government-run in Norway, as we have a tradition of social democracy.

E: Does Norway provide adequate services for autistic people?

Ivar: A push for better services appears to be the norm in the whole autism community, including the Autistic Community. This is no different in Norway, though many autistic adults I've communicated with feel that their group has been neglected in favour of parent groups. As the national autism society in Norway (Autismeforeningen) have often appeared to be more parent-oriented.
There is a wish for self-advocacy groups for people on the spectrum. We've also got some inspiration from the other Scandinavian countries, Sweden and Denmark, were similar networks appear established. The language barrier isn't very significant among the Scandinavian countries, even without English.

E: Do you consider yourself a member of the growing Autistic Community?

Ivar: I believe I am, or at least I take great interest in the Autistic Community. Some people have suggested that I'm obsessed with autism. Personally, I would say that I have a lot of interest in the many very different people, with or without autism, related to the autistic community.

E: Tell me about the Autistic Community in the Norway.

Ivar: There is certainly communication among autistics over the Norwegian-written Internet. I've also encouraged and participated in a few meetups here in Stavanger among people with Asperger's - though I wouldn't call it a well-established Autistic Community. Disputes happen as in many other online communities, especially when there's differing ideas about some of the more fundamental aspects of a community - like who to include.
I've strongly supported inclusion of more disabled autistic individuals willing to participate in a self-advocacy network, as well as opposed naming a possible network with anything that would suggest that the network did otherwise. Not everyone understands why when few among us are acquainted with more disabled individuals on the spectrum.

E: What is most appealing to you about the worldwide Autistic Community?

Ivar: As I probably indicated before, it is the many different people with many different backgrounds. I first got introduced to the online Autistic Community through the online forum called 'Aspies For Freedom' shortly after I was diagnosed. Through this community I read from people whom I felt I had a lot in common with, and I definitely got more comfortable with the way I was after previously having experienced bullying based on my behaviour.

E: Tell me about education for children who are on the spectrum in the Norway. Are there special programs and classrooms? Mainstreaming? Accommodations? Legal protection?

Ivar: Again I have to confess my ignorance. Of the accommodations I've experienced is probably an aide in lower secondary, which is the most notable. I felt it was unneeded, and the Aspies For Freedom online community gave me an opportunity to rant about my aide with other youths who apparently had similar feelings about their aides. One girl on the Aspies For Freedom forum planned to get rid of her diagnosis of Asperger's merely to avoid her aide. Really, I obviously couldn't benefit from having an aide, though I suspect others may develop more meaningful relationships with their aides.

From a previous interview on your blog with Norah vd Stel I've read that the government in Holland have a focus on inclusion and thus attempted to avoid having pupils in special schools. A mentality of "equality" exists in Norway as well, which may be one of the aspects of social democracies that can be tough on autistic kids - although it is frequently pointed out that equal opportunities isn't always the same as equal treatment.

E: Give me the gist of how disability is viewed in Norway.

Ivar: In a heated discussion at school about prenatal testing and Down syndrome, I heard someone argue that it was perfectly reasonable to abort babies with Down's... because it was a "syndrome".

This person's obvious lack of knowledge of the term is something that actually reflects Norwegians confusion regarding what words to use in relation to disabilities. In an actually quite important news article that argued the rights of autistic adults, the title was written as "Bullied and harassed on the basis of his disease". The person whom the article referred to, whom I also am acquainted with through online discussion, didn't seem to mind that the journalist referred to Asperger's as a "disease" - which probably would have caused some reactions if it was written in an English-written newspaper. Additionally, quite a few autism-related forum dwellers do not distinguish between "condition" and "diagnosis". It is thus hard to interpret how people view autism or other disabilities on the basis of their language - as many may call autism a disease merely because they can't come up with a more appropriate word, or are unfamiliar with the history of disability rights and see no deeper meaning in what words they use.

So, for various other reasons as well, it hasn't been easy for me to determine how disability is viewed in Norway, but from what I can tell there certainly doesn't appear to be any consensus.

E: You dealt with bullies when you were younger at school. How did this make you feel?

Ivar: It was primarily psychological bullying, there wasn't much physical besides once having experienced a shower from a garden hose. Luckily someone nearby was willing to give me something dry so that I didn't need to walk all the way back home with wet clothes.

Almost seven years of repeated teasing through primary. Pretty much everything "not normal" was made fun of - how I walked, how I talked, what toys I played with, and many other things. On the basis of all this a bully concluded that "You're failing" - a saying which he repeated before me for many years. I was also given a hard time when, as an example, my school books were thrown out of a second floor window in the classroom.

I was very depressed throughout primary, but after primary, when I seldom had to encounter my previous bullies, things went more pleasantly.

E: What did adults do that made the situation worse? Do you wish things had been handled differently?

Ivar: I wasn't very eager to notify teachers or parents about the teasing. It was filled with shame, and I was convinced that it wasn't "real bullying" as videos of physical bullying on the telly [television] appeared way more serious. Besides, I felt that telling of the bullying was unlikely to do much if anything. Another pupil who supported me a lot throughout primary did however notify my teacher, and apparently one of the bullies then got a hard smack on his hand. Still, the bullying continued throughout primary.

E: If you had a son on the spectrum, who was being bullied, what actions would you take to help him?

Ivar: Considering that I felt that my situation was unavoidable as long as the bullies went on, I find this to be a very tough one. It would of course be dependent on the situation, but I would probably attempt to maintain my son's esteem, be very aggressive against any bullying, and be sceptical of claims from teachers as well as my son saying it is all alright.

E: What is your understanding of the biomedical approach to autism?

Ivar: I associate the biomedical approach, in the context of autism, with a treatment approach that is based on much less rigorous science. I believe something remotely similar has been said by Bernard Rimland - the founder of Autism Research Institute, which is basically the headquarters of the so-called "Defeat Autism Now!" network.

I also think that this approach is one of the most spookiest things uncritical thinking has brought to modern society.

E: Do you support the biomedical approach?

Ivar: I support appropriate scientific method, and after having heard a lot about the biomedical approach I have become rather convinced that quite a few of the treatments included in the biomedical approach are not based on sound science. 

Though people should trust an academic opinion more than mine, which causes me to refer often to Michael Fitzpatrick's recent book -Defeating Autism: A Damaging Delusion.

E: Do you know of any autistic adults who have been helped by the biomedical approach?

Ivar: I do know of one young Norwegian woman whom I see as having been very much into the biomedical approach. Once I heard from her she was considering chelation, though I don't know whether she went through with it. She did appear to believe that she has been helped by the biomedical approach. I can't say that for sure, as I, among other things, don't find her spelling much improved - it's still terrible, if not even worse. Using anecdotes as valid evidence in science only becomes self-contradictory anyway.

E: You used to be on a casein-free diet. What was the purpose of this diet?

Ivar: About the same time as I was diagnosed with Asperger's I was tested for what was called "protein intolerance" (referring to the proteins casein and gluten). According to the theory associated with the Norwegian doctor Karl Ludvig Reichelt, who first articulated a possible connection between opioid excess and autism in 1991, I could be excreting opioid peptides that also affected the working ability of my brain. This was tested with liquid chromatography (HPLC). My family was told that I was basically "milk-addicted" on the basis of the results, and a diet free of diary products was suggested.

I have thus until recently been on a diet free of milk. Personally I've always been sceptical, though my mom had faith in the diet. The diet stopped after we heard of a study that indicated that people on a gluten and casein free diet could develop osteoporosis. Additionally, we have heard of a study that got a lot of media attention in the English-spoken media in March of 2008, but not in the Norwegian media despite its relevance to the popular culture surrounding gluten and casein free diet here.

The authors of the study concluded that its findings demonstrates that the test I was subjected to, which was the basis of the claim that I was "milk-addicted", has no relevant use in relation to autism. The study found that, although a test with liquid chromatography could indicate excretion of opioid peptides, further testing including mass spectrometry rejected presence of opioid peptides in all 65 autistic and 158 control participators - which I find utterly damning.

E: What are a few of your struggles--as far as being on the spectrum--and how do you deal with them?

Ivar: A problem that I don't see others struggle with as much as I do, would be getting work done - major procrastination issues. Through the autistic online community I've got to know some possible explanations - it appears to be called executive dysfunction, or inertia as it is called in an article at Autistics.org. It can perhaps also be related to some undiagnosed ADD in me.

E: What is the one thing you would most like people to know most about autism?

Ivar: I've done a bit of philosophising (I do a lot of just that) on what autism is, what it means, and what it shouldn't mean. I've concluded that autism is first of all a concept, a name we've given an array of traits frequently appearing in the same people - which of course is the basic definition of syndrome. That people have these traits may mean that they should be given special support or treatment, but I find that applying irrational feelings to the concept, such as thinking that it is something that you should be frightened of, see as pitiful, or the reason to love somebody, can appear to be the reason behind irrational actions done in relation to autism. Though, people may disagree at will.

E: Just for fun, what is something about the Norway you would like other people to know?

Ivar: We don't have polar bears. Seriously, that's a myth.

Another thing, in Norway cars tend to stop if you appear to be planning a walk over the road - which unfortunately has caused a few car accidents involving Norwegians outside of Norway.

Thank you so much Ivar for this fabulous interview. You have given readers valuable insight. Keep up the fabulous art work!

World Autism Interviews: Alyson Bradley/New Zealand

Cracked...segregation...dreamlike state...survival
Port of Lyttelton
Alyson's world
Alyson and her two sons

Interview with Alyson Bradley

Alyson Bradley was born and raised in London. She now lives in Christchurch, New Zealand with her husband and two sons. She is Asperger's autistic, as well as dyslexic and dyspraxic. Alyson is in the process of writing her first manuscript. She also runs a website called Aspergers Parallel Planet. Her other endeavors include collaborating with the New Zealand Ministry of Health Autism Spectrum Disorder branch on several causes, such as the Implementation Guidelines Group. She is also involved with a charitable trust that provides support to spectrum adults called Autism Spectrum Kiwis Trust New Zealand (ASK Trust NZ). Alyson's older son is also on the autism spectrum.

E: Tell me about your life in New Zealand. Also, how old were you when you received an Autism Spectrum Disorder diagnosis?

Alyson: My life in NZ is a long one, but in short, one of my better moves in life. It gave me the time and space to re-look at myself and to start to understand my mysterious differences. I feel privileged where I live now. I live in a great area with lots of trees and walks nearby and also with amazing views.

London was slowly crushing me. I never realised the reasons behind my problems and misunderstandings, as well as why such an intelligent person as myself found life at times so unbearable.

Moving to New Zealand gave me peace of mind and the time to self discover, as well as to find the missing broken parts of myself. Now life is itself. I do not only have Asperger's but also other associated conditions and neurological differences, along with a mix of of complex extremities. Being diagnosed with many overlapping, inner-acting differences, I just knew I had to reach out and help others to understand. To think of anyone as lost as I was for so long, living in the shadows of life, does not bear thinking about.

First, I was diagnosed with intellectual learning differences, which gave me a great insight into my strengths and weaknesses. Less than 2 years ago, I was also diagnosed with Asperger's at the age of 48. I am to be 50, in a few weeks time, and I have a feeling that this is when my life will truly begin--I hope so.

I try not to look back over my past life, as there are so many things I would rather forget. What a roller coaster I have been on, but I feel I have survived the big dipper and my hectic research in these past years has helped me to gain so much insight, as well as to develop a sense of inner peace. My older son was diagnosed later in the same year as me--November 2007--just after his birthday. What a present!

E: Is anyone else in your family on the spectrum?

Alyson: My wonderful older son, who is now just as proud and happy to be an Aspie as myself. Our only problem continues to be a lack of real awareness and understanding from others.

There is a huge history of possible autism in my extended family--some now diagnosed and some not wanting to know. In fact there are many others in my life that are quite possibly on the autism spectrum, but not necessarily ready to take on the label. To be honest, I do not feel it should be about that anyway. But as I have learnt the hard way, I may not always have been understood, but I also did not understand others. Due to this, I feel I may have unintentionally, at times, hurt the ones I love most.

E: How has your life changed since moving to NZ and what is the general situation for autistics in NZ?

Alyson: My life has not always been this way, as I will always remember where I came from. As a child, my family went through evictions, homelessness, and we lived in various homes. So as soon as I could, I worked. My differences, however, caused me much pain at times. I feel I deserve to be where I am now in life.

The life situations of autistic people in New Zealand varies. Those of us on the autism spectrum are as diverse and different as anyone. The population is quite segregated here and so it's hard for me to tell.

I feel I am still hiding behind closed doors--a safer place it seems for many still. The people I have met share stories of let down and often pain. The one fact that often comes to mind is the isolation and loneliness for many autistics. In that sense, I am thankful that I have a family who supports me. Here, in NZ, I live a life more fitting to who I am and it has given me the space to do the things I maybe always should of done when younger--things like painting and writing. As for the real world, I feel unemployable here, so I continue to try and prove (if not over-approve) myself until a another door opens, as I cannot afford to stay hidden forever.

E: Does New Zealand provide adequate services for autistic people?

Alyson: No! For children, there is some segregated support. Oftentimes, parents enter an endless battle of getting funds for any real support. Usually this ends up being a big financial pressure to the family of the child, putting more stress on often an already stressed family.

As an adult, when I was diagnosed, I was in shock at first. I had nowhere to turn, not wanting to pay for professional help, as have never liked to take medicate. The only advice I got was to medicate--no thanks! I knew what I really needed was to talk to like-minded people so that I could sort out the many thoughts racing through my mind.

The main groups here are all run by mostly non-autistic people who mean well, but can make you feel subhuman. So I started searching and reaching out. Then I wrote my first article to help raise awareness and to help me make sense of things. The computer has become a great friend.

E: Where is the most improvement needed--for autistics--in New Zealand?

Alyson: There are many individuals still living in the shadows of life who were bullied when younger and have never found their place. These adults need support and also need to be given a chance. A chance that was stolen away from them in having never been allowed to be who they were born as.

As for children, I remember the frustration and pain myself and hate to think of any child suffering in this world. In regards to autism, society in general has not embraced or recognized the bigger picture of the autism spectrum. And until the whole school systems, society, etc. begins to change, those of us more neurologically different will always be slightly at odds with the world.

Parents of children on the spectrum have often criticized me because I do not like the words "fix" or "cure". I understand parents wanting the best for their children--don't we all--but the battle should not be between parents of autistics and autistic individuals. It should be with the governments. There has to be a middle ground for real change. We all want for our children to be accepted. These children will only fit in if societal attitudes change and begin to embrace, as well as raise awareness and understanding for all. I feel its about time everyone embraced the ASD community and allowed us all our differences.

When I was younger, autistics were institutionalized. Only now are they are beginning to be understood. Progress does not happen overnight. No one can be what they were not born to be and they should not have to be. For example, no one would insist that I change the color of my skin to fit in. Finding, allowing, and accepting my autistic core and heart, and allowing the person inside who I was born to be to come back, has been one of my main joys in life.

E: What services, for autistics, in NZ are run efficiently (if any)?

Alyson: There are many good people trying to help in their own way, but there is far too little and often misguided information out there. I am working with The New Zealand ASD Guidelines Group, but I cannot help but wonder how much will just be unimplemented policy and how much will get filtered out via the huge hierarchy of top-heavy management systems.

Here's a few autistic and public comments from the Guideline Summary to give you an idea of what we are up against in NZ:

"It's like attacking a seven-headed monster! You don't know which head to attack first!"

"It is not wrong to think in a different way."

"I have not recovered from autism. I believe that no human being should be ashamed of who he or she is."

"Parents become highly educated out of necessity, not out of choice."

The National Autistic Society, in the United Kingdom, has come along way since I was diagnosed. Sometimes for that reason I wish I was back home in England, but I am dedicated to helping educate the NZ people about ASD.

E: Do you consider yourself a member of the growing Autistic Community (by this definition)?

Alyson: Yes! And not only have they been a great lifeline, but they have become like an extended family--thank you!

E: What is most appealing to you about the worldwide Autistic Community?

Alyson: Because Autism is a worldwide issue, it affects us all in the same way. It has no class or race barriers and it's invisible among us all. In so many countries and places, it is often kept as a hidden secret. To some, it's a shameful secret! But worldwide I feel the tide is turning. We are extending new rays of hope to autistics who are lonely and possibly *hidden*. The Internet is one thing that helps me to connect with the bigger world community. Like my invisible difference, it’s my invisible connection, as well as the way I often prefer to communicate.

A person from Oz (Australia), who I've met on my journey, puts it this way:

“A wave powered by a strong tide, becomes a force to be reckoned with. It will be seen, heard and felt by many. Some people will remain unaffected or uncaring, but others, who have not noticed the ripples before, may turn, notice and begin caring" - Louise Page

E: Please share your tips for how best to communicate with a person on the spectrum.

Alyson: At times it's like I just need to talk and to be heard. And I don't always need a response from others. There are times I have been ignored and told to be quiet because others do not have the patience to communicate on my terms--never mind that I often communicate on theirs!

I never have and never will communicate totally like everyone else. When younger, either silence or my verbal dyspraxia kicked in when I became nervous. It caused me to speak in a jumbled chaos--I was a great bully target! I still jumble my words and repeat at times, or go off speaking on subjects no one is listening to or talking about. I know at times I shouldn't, but I now have the confidence within myself to now say, "Hey, that’s just me."

We can teach our children how to fit in or how they should act, but that does not mean they will ever be happy doing so. I will always be the extra awkward one when meeting new people or the one ranting on with no one is listening. I feel it’s more important that confidence is instilled in being who we are. Would you tell a blind person its preferable they need to see in order to fit in?

Forcing someone to talk is pointless, they will only withdraw more and it just creates stress. Coaxing gently is okay, as long as it's not forceful. ASD children can be "on" or "off" when it comes to talking. Forcing speech during an "off" mode doesn't work! I see this as abuse and it only leads to frustration, meltdowns and shutdowns. We all should be allowed to communicate how we most feel comfortable, otherwise we can end up feeling like performing monkeys!

My advice, if you do not understand someone, is to re-look at *self* and be more open-minded to how others communicate, as one hat does not fit all.

E: Tell me about education for children who are on the spectrum in the New Zealand. Are there special programs and classrooms? Mainstreaming? Accommodations? Legal protection?

Alyson: It is so varied, but in general, even if you get funding there often is just not enough good specialized support in New Zealand.

Its has been said that 40% of all school children have some sort of neurological difference (includes ADHD, ADD, Dyspraxia, dyslexia etc...). ASD is a neurological difference. Neurologically, maybe there will be more of us one day, the tide seems to be turning as many step forward and tell their stories.

If you're an adult in New Zealand most of the time you would be on your own if it was not for the Autistic Community.

E: Give me the gist of how disability is viewed in the New Zealand. Are people open and accepting, as well as understanding? Or do people deny disability and avoid it when possible?

Alyson: Generally people here avoid what they do not understand. When I have tried to explain myself to people who I feel I know quite well, I get that knowing nod, the fixed smile that lets me know that they are not really listening, or wanting to understand. Maybe some people are just not capable of understanding. Oftentimes, unless I am around like-minded people, I am made to feel subhuman. I have been told that autism is a sad mental disorder. Sometimes, I just have to smile back and go on to better things. At times, I am the person some people prefer to avoid. What choice do I have? I can be me and let them back more away, or I can pretend--which ends with me just being frustrated and exhausted. I will continue to chip away at people, in my own way, as I am here to stay. I naively thought explaining myself would be easier with a diagnosis, but I am dumb struck at times by the ignorance of others.

E: Are there organizations in your country promoting autism awareness? If so, what is the message offered?

Alyson: I guess I am the first Asperger's Web Site for and by Aspies in NZ. My web site is used as a link here in NZ and there are probably various other independent sites and blogs with messages similar to mine. The larger organizations, I feel, are years behind organizations such as the National Autistic Society in the UK. That organization actually employs many people on the autism spectrum now. I so agree with them in using the slogan "Nothing about us, without us!"

E: Just for fun, what is something about New Zealand you think other people would be interested in knowing?

Alyson: The part I love about New Zealand is being able to have the space to create your own world within this world. There truly are some amazing places here, which I feel I can best describe via the name and description of some of my art work:

Refractive Illusion: The world around us can have a huge effect on how we feel and think. Just being in the presence of a large mountain range--so desolate and cold at one moment--but as the sky lights up and a celestial ray of light appears, deep sadness turns to hope. The experience can take a few moments, not really knowing how or what has happened, but then one finds the *self* full of excitement and exhilaration.

E: Thank you Alyson for sharing such an up close and personal interview.