Aspitude!

Parents in the Autism World

2009-12-15T09:01:00.000-08:00

Do Autistic self advocates view parents of autistic individuals as enemies? Do they perceive parents who support organizations such as Autism Speaks as opponents?

It should not be forgotten that a portion of Autistic self advocates are parents of autistic children themselves.

Enemy is a strong word to use toward parents who are most often at the hands/mercy of educational and medical service providers. Information about autism that parents may receive from these service providers often does not focus on self advocacy and equal rights for autistic children. Instead, provided information tends to focus on only medical views of the autistic condition, in addition to services and treatments provided for autistic children. While some of the information contained in the references may be helpful and worthwhile, there is often nothing educating parents on the existence of the adult Autistic community and its literature and organizations. Parents are given little to nothing in regards to the concepts of autistic self advocacy, disability rights, and the social model of autism.

A parent's main concern is going to be to help their child by utilizing whatever means are available. Good Parenting 101 = Help Your Child No Matter What. Parents will naturally lean toward autism-focused groups and/or organizations offering help and support. Inspecting the inner-workings of such groups and organizations may be the last thing on a parent's mind when they are knee-deep in making sense of the new course or path their life has taken.

People who have never been exposed to disability on a wide scale cannot even begin to fathom why an autism-focused organization--such as Autism Speaks--may not necessarily be all that it claims to be. After all, why on earth would organizations that are claiming to help the disabled have nothing but only the best of intentions?

Self advocacy and empowerment of the disabled is a giant step in thinking when coming from a place of needing healing, help, and support, especially when the support services offered have come from a one-sided medical perspective.

Some parents of autistic children are extremely proactive, sensitive, and thoughtful. Some parents latch on to the first thing they see/try and cling like a vine. Some parents reach out and contact other parents of children on the spectrum and ask what those parents are doing. Some parents go home, Google autism, and BOOM: Autism Speaks and Autism Research Institute appear.

It is of significant importance to remember that heart-broken well-meaning parents are going to be quite confused when they see Autistic adults protesting an organization that has essentially served as a resource to parents of autistic children. Many parents who feel they have done a decent job navigating the world of autism are going to be shocked when they see a protest sign with a message reading: Autism Speaks Does Not Speak for Me! Or: Nothing About Us Without Us!

Autistic Self Advocacy Network (ASAN), The Autism Acceptance Project (TAAProject), and TASH are organizations that are just as valid for parents to know about and utilize as resources. Are we fully preparing autistic children for life if we ignore the voices of autistic adults? What message does that send to ignore autistic adults and exclude them from important decision-making processes?

Thanks to the intolerant structure of our society, many people need to be taught to release fear, pity, and myth in order to accept what is different. It is a shame that we seem to be born with acceptance and tolerance intact, however, some of us are poisoned by the social climate we inhabit (ex: media throwing around the word retard as if there is no consequence, therefore feeding and perpetuating damaging conscious and subconscious stereotypes).

Many upright well-intentioned people do not know how to accept autism because it is not being taught on a wide enough scale. People have to want to accept autism, and only then can they Google it and make informed decisions regarding the sources presented.

There is a great void to be filled. As far as the Autistic community is concerned, we have a lot in common with parents, only it needs to be explained that the *means* of cure is not effective toward our common ends. I would like to see the growth of auxiliaries to autistic self advocacy organizations and groups so that parents may get involved in a pro-self advocacy spirit.

Parents of autistic children are not the antagonists of the Autistic community. They are potentially our greatest support.

Stirring Up Action: The Winds of Disability

2009-11-11T14:04:00.000-08:00

The greatest disability is not of the body, but of a closed mind...

From whom do we access information that leads us to gather facts and to form opinions about disabilities? Do we turn to academics, doctors, instructors, and therapists? Governing bodies, media, and schools? Family and friends? How do we process and understand the varying approaches, facts, and opinions? Who do we decide will bear the most weight in helping us to create internal dialogues and references for understanding disability? And what factors lead us to believe one source, or sources, over another? Do we think with our hearts? Or do we think about what is acceptable to mainstream society?

Where are the voices of the disabled? And why is their public representation often meager, or token, at best? Why does one need to go through a personal awakening and revelation to conclude that the voices of those who are disabled not only exist, but are strong, valid, and vibrant?

Beneath the myopic confines and constructions of those who claim to know best are the whispering voices of the disabled. Voices that, once you stop to tune into them, become very loud, honest, insightful, meaningful, and real.

The number of books written by academics and clinicians that are marketed to parents of young children who are disabled is massive in comparison to the number of books written by disabled people. This is a typical example of the the damaging myth that disabled people cannot possibly speak for themselves. Something as innocent as a book is a prominent reinforcer that disabled people should be seen (if even that), but not heard.

Media plays a colossal role in shaping public perception. Unfortunately, disability in the media is often centered around fear and pity, or treated with benevolence and do-goodery. Well-intentioned or not, such messages are adverse, ruinous, and useless in raising and shaping effective and positive mass consciousness. Conditioning people to mourn the disabled counters proactive messages and stifles the chance for understanding the scope of disability. How is the disabled self-advocate, who has fought hard for the right to self-esteem, supposed to feel accepted and welcome when media and medical establishments often paint all conditions with the same authoritative brush? The Disability community has waged a grueling crusade (which is often challenged, ignored, or silenced) for equality, integration, respect, and support.

Unfortunately, most people are often exposed to only a small handful of persons experiencing a disability. With such little contact, that may be laden with discomfort, misunderstanding, and stigma, we are sheltering ourselves from the rich reality and spectrum of disability.

As a person who is both on the autistic spectrum and deaf, I have tolerance neither for illiterate comparisons (such as comparing autism to a fatal car accident), nor being regarded with suspicion when I do not act or appear the same as other autistic or deaf people that a person has met, lived with, or seen. Why is it okay with so many people to view disabled people with disbelief and/or skepticism when we do not fit a mold that is often not created by us in the first place? Why are we often judged with such a heavy hand? And who decided that it is okay to take away our voices and to speak for us without including us?

Challenging benevolence can lead to belligerence, with indignant voices saying: You absolutely cannot challenge altruism, charity, do-goodery, and walk-a-thons for the disabled! To that, the Disability community says: Oh yes we can. Nothing About Us Without Us!

The winds of disability are calling all citizens to action...

Norman Kunc, a well-known speaker on the topic of disability, focuses on the educational rights of students with disabilities, as well as how communities and schools can build a sense of belonging devoid of false allegiances and perceived common enemies. Norman is an especially moving and powerful speaker who owns his voice. He once said, "No matter how far technology advances, disability will always be here because it is a normal part of human diversity."

Fortunately, it is becoming more common for governing bodies to make an effort to reach out and include disabled people (and more than just one *token* disabled person) in their decision-making processes. For example, the Oregon Commission on Autism Spectrum Disorder has taken strides by including autistic self-advocates on both their committee and subcommittees.

Let's step forward to nourish and promote disability advocacy and empowerment, as well as leadership and public education. Support the voices of disabled people. Collective thinking and action is the key to transforming the hearts and minds of humankind in regards to the place and value people with disabilities have in society.

For further exploration:

American Association of People with Disabilities (AAPD)

Self Advocates Becoming Empowered (SABE)

TASH - Disability Advocacy Worldwide

It is a fine thing to have ability, but the ability to discover ability in others is the true test. -Elbert Hubbard

ASAN seeks advocates to fight against school abuse

2009-12-08T08:14:00.000-08:00

Bipartisan federal legislation to protect children from dangerous restraint and seclusion in classrooms will be introduced this Wednesday by U.S. Reps. George Miller (D-CA), who is chairman of the House Education and Labor Committee, and Cathy McMorris Rodgers (R-WA), who is a member of that committee, as well as the Vice Chair of the House Republican Conference. Their press conference will be webcast live from the Education and Labor Committee website at http://edlabor.house.gov at 11:00 AM EST on Wednesday, December 9, 2009.

A recent investigation by the U.S. Government Accountability Office found numerous reports of injury and, in some cases, death as a result of the inappropriate use of restraint and seclusion in classrooms. Many victims were children with disabilities. At present, there are no federal policies that prevent the misuse of restraint and seclusion in schools, and many states also lack sufficient regulation to protect children from these harmful practices.

The primary focus of the legislation above is to limit restraint and seclusion to where it will only be allowed in the event of an imminent danger (to the person or to others) and only if alternate techniques have proven ineffective. There is funding available that will flow to states to create training programs on alternatives to restraint and seclusion, including techniques such as de-escalation, conflict prevention, and conflict management.

ASAN is currently looking for volunteers to help with efforts to pass legislation that will protect students against school abuse. If you would like to help ASAN spread the word about these upcoming advocacy efforts, please write to info@autisticadvocacy.org (or visit Contact ASAN) to volunteer. Enter "Restraint and seclusion" in your email subject line.

Further reading:

*GAO: Schools restrain, confine disabled children

*GAO Report Finds Hundreds of Allegations of Abusive and Deadly Uses of Seclusion and Restraint in Schools

*National Disability Rights Network/RE: Restraint or Seclusion in Schools

You Want Summa Dis!

2009-06-03T10:51:00.000-07:00

[Disclaimer: I fully endorse autism-related support groups that are autistic-friendly, empowering, positive, and proactive. I would like to both acknowledge and thank all autistic people, clinicians, doctors, parents, therapists and other professionals who lead these groups in inclusive respectful ways.]

Imagine my surprise when I received the email response below from a potential attendee/supporter of the Autistic Self Advocacy Network - Portland chapter. The response below is a reaction to the brief email I sent to this person who requested further information about our group. I advised this person to bring something of interest to share with our group, as we like to encourage the passionate interests of autistic people:

Bring something to share with the group?!!! That last part just ruined the whole idea of attending for me; it makes it sound like a daycare for the awkward! What is it like socially awkward show & tell or something? I think I might just stick with Wrong Planet if that's the case...

At first, I was horrified, but then I thought better and decided to turn this email into a blog post about the burning opposition and inner seething many autistic adults feel toward groups led by *well-meaning* clinicians and therapists.

Just because a person is autistic and may have specific needs, does not mean he or she will jump at the chance to join a patronizing group led by a clinician or therapist who may not be sensitive to the real needs of autistic people. Many autistics are on the lookout for groups that lay the foundation for empowerment, respect, and self-advocacy. Pessimistic support groups focusing on cures, pity, and what's wrong with autistic styles of being, are void of real-life application for the self-determined autistic.

Why should the self-determined autistic have to go about life feeling as if he or she is a detriment to society, or that they should never have been born? Who decided that autistic individuals should reach adulthood only to continue carrying a torch blazing with hopelessness and regret? How does this foster self-esteem? Is prolonged pity proactive or pathetic?

It often radically stunts the development of autistics to grow up in an environment where there is a constant sense of sorrow and tragedy. How is the autistic individual supposed to reach a functional sense of autonomy while learning, or even attempting, to survive in such a counterproductive atmosphere?

The constant barrage of negativity surrounding autism--including twisted media hype, fear, and panic--needs to stop. As it stands, there is no cure for autism. That noted, valuable resources should be directed toward quality of life oriented studies, as well as services intended to enable and integrate autistic people.

This brings me to the importance of organizations such as:

Autistic Self Advocacy Network, ASAN
Academic Autistic Spectrum Partnership in Research and Education, AASPIRE
The Autism Acceptance Project, TAAP
TASH

I would like to mention a new autistic-run magazine created by Sharisa Joy Kochmeister titled The Voices and Choices of Autism, set to debut later on this month. This is a brilliant example of what autistic people are capable of accomplishing if they are supported and taken seriously, as well as encouraged to defy medical and pity-based odds and barriers.

Amazing things happen when autistic people refuse incorrect assumptions and myths and instead persevere by setting goals related to their passionate interests.

*If you're interested in a free subscription to The Voices and Choices of Autism then email Sharisa (who gave me permission to list her email address here) at:

sharisajoy@yahoo.com

.............................................................

So here's the second email response I received from the above temporarily-disgruntled-autistic who showed interest in the Portland ASAN chapter--after I further explained our group mission:

Ah, then I apologize for my previous rude outburst. From what it looks like, 99.95% of these groups are parent support groups, with maybe only a minor populous of actual autistics, kind of like Autism Speaks (zing?), so my initial impression was patronization. Now with a clear head, I see I was way off.

There's nothing like a successful outcome for the autistic alchemist who sets out to transmute opposition into understanding.

Survey to Assess Needs for Improved Course Designs

2009-12-03T14:33:00.000-08:00

The Academic Autistic Spectrum Partnership in Research and Education believes in promoting research that is inclusive, respectful, accessible and relevant to the autistic community. As such, AASPIRE is writing to you to let you know about a non-AASPIRE study that shares AASPIRE's values.

Please see below for more information about a study being conducted by Christopher Wyatt.

AASPIRE hopes you may be interested in participating in this study. -The AASPIRE Team

Survey to Assess Needs for Improved Course Designs

As colleges and universities offer more courses online, it is important that we consider how students with autism spectrum disorders approach online communities, especially online classes. My experiences as a diagnosed high-functioning autistic student and instructor have led me to question how online courses could be designed to better serve students with autism spectrum disorders. I am conducting a survey, seeking to determine if there are characteristics of some online communities ASD individuals prefer. I am also interested in learning what qualities of online communities might be disliked by individuals with ASDs.

If you are an individual with an officially diagnosed autism spectrum disorder interested in offering opinions about online communities, I hope you will consider completing this brief online survey. You do not have to be a student. However, you should have some experiences with online communities so you can explain what design qualities are or are not appealing in various communities.

This will be an anonymous survey. Only your answers to interview questions will be saved and referenced during the study. The survey is offered via a secure server and all data will be destroyed after analysis is complete.

If you are interested in participating in these interviews, please visit the following survey link:

https://www. surveymonkey. com/s.aspx? sm=6hUN2HISyDpNY nlwPpLkxQ_ 3d_3d

Click Here https://www. surveymonkey. com/s.aspx? sm=6hUN2HISyDpNY nlwPpLkxQ_ 3d_3d to take survey

Thank you, Christopher Scott Wyatt Doctoral Candidate

Rhetoric; Scientific and Technical Communication

Digital Literacy and Pedagogy

Dept. of Writing Studies

University of Minnesota

wyatt050@umn.edu

This study is referenced by University of Minnesota IRB Code Number 0909P72516.

*Study closes 31 December 2009

Autistic Community

2009-03-08T17:28:00.000-07:00

Connect to Autistic Perspectives

What is the Autistic community?

The Internet has been a monumental force in bringing together individuals on the autistic spectrum from all over the world. A large portion of this community supports a social movement by and for autistic people that aims to spread awareness of neurodiversity, as well as the acceptance of autistics as a unique person-hood and not as a defective part of humanity deserving of extermination, prejudice, and stigma.

Perhaps you have heard the term Aspie used to refer to an Asperger's autistic person, or the term Autie used to refer to an autistic person. Some autistic individuals use these terms, while others find them obnoxious and offensive. The term neurotypical (NT) is often used in reference to a person who is not on the autistic spectrum. In my opinion, it is best just to use the term non-autistic.

Advocacy is central to the Autistic community. Changing public perception, correcting autism myths, and encouraging forward movements in public policy are some examples of advocacy within the community. Please visit Autistic Self Advocacy Network (ASAN) to learn more.

Why is there a need for an Autistic community and what is the point?

Those questions can be countered by asking why autistics should take a back seat to any mission that dismisses the voice of autistic individuals. Does the existence of disability rights really need to be questioned?

Organizations that claim to raise autism awareness, or to speak for autistics, when in reality they are amassing funds to support eugenics, have little to do with positive productive autism awareness.

Autistic children become autistic adults. Widespread services and support for individuals on the spectrum is desperately needed. Funds going toward cures is neither what the Autistic community is asking for, nor what it needs. What the community does need is support in the here and now: access, acceptance, accommodation, integration, opportunity, and legal protection.

The Autistic community can speak for itself. Misleading and unsupportive organizations, such as Autism Speaks, do not speak for us as a whole.

Disabled people should be included in any decision-making regarding information, laws, policies, and treatments that directly effect us. Nothing About Us Without Us!

Autistic Self Advocacy Network, SW Ohio: Why Autism Speaks Does Not Speak for Us

Ballastexistenz: Archive for 'Autistic Community'

The Autism Acceptance Project

The Washtenaw Voice: Neurodiversity project aims to promote, empower 'different brains' on campus

View the Spectrum

2009-03-08T20:43:00.000-07:00

By definition, a spectrum refers to a continuous sequence or range. So why is there so much confusion and myth surrounding the various ways autism can present?

As listed by the Autistic Self Advocacy Network (ASAN), individuals on the autism spectrum share certain attributes such as hyper and hypo-sensitivities related to sensory stimulation, intense focus on special interests, introversion, unique approaches to social interaction, and typically detailed thinking.

There are several classifications, but we often hear about:

a. Classic autism

b. Asperger Syndrome

c. Pervasive Developmental Disorder Not Otherwise Specified

It is not uncommon to hear references such as High-Functioning Autism (HFA) or Low-Functioning Autism (LFA). Those terms, however, are offensive to the Autistic-Community, as well as subjective. It is imperative to look at how functioning is currently being defined as applied to Autism Spectrum Disorders. For example, should an autistic person who is nonverbal be considered low-functioning despite the fact that he or she is able to communicate using an Augmentative and Alternative Communication (AAC) device?

There needs to be some light shed on the fact that there happens to be a great number of adults on the autistic spectrum who happen to be highly self-determined, yet they still experience significant struggles in life. What sense does it make to divide autistics into categories of high and low functioning, and then demand that such individuals compete for resources that are already scarce and limited? Functioning levels are ambiguous.

Autistics may have an I.Q. that falls on both sides of the bell curve. In other words, it's not uncommon for an autistic person to have a significant range in I.Q. testing scores. It is vital to take into account verbal and social issues, as well as individual learning styles.

We need to support awareness and understanding of uneven skills in individuals who are on the autism spectrum. The attainment of valuable meaningful services for the whole of the autistic population highly depends on widespread comprehension of the many ways autism can present.

Examples of uneven skills:

1. Having extreme intelligence with computers and written communication and then not being able to make a sandwich or prepare food.

2. Sophisticated writing abilities, yet either struggling with spoken communication and/or being nonverbal.

3. Possessing an amazing savant skill and then not being able to take care of basic survival needs.

4. Excelling at calculus, yet being incapable of doing simple arithmetic.

5. Being unable to apply a well-known skill at all times in all situations.

6. Being highly organized yet struggling to remain so under stress or without contextual cues.

Further reading:

10 Autism Controversies

Skills Here. Skills There. Skills Spiraling Everywhere.

What Is Autism?

You're Not an Alien. It's Asperger's.

2009-03-08T21:51:00.001-07:00

Can I take this mask off now?

Asperger's (DSM IV Diagnostic Criteria)

From a very young age, I was aware that I was different from other people. I was also sure that I was an alien. People, especially other children, often commented on the things I did that they thought were exasperating, different, or odd. A few examples:

I stared at things for long periods of time, completely losing myself in whatever it was that caught my attention.
I repeatedly asked my mother the same obsessive questions over and over on a daily basis (ex: Do you love me?).
I guarded all of my belongings, afraid of people touching my things or setting them out of place.
I studied things such as the grain of wood, the reflection of light upon objects, and the various shapes of television knobs.
I preferred to play alone, unless I had complete control over the play situation.
I was very sensitive to smells, certain sounds, visual distractions, and tactile stimulation.
I had great difficulty understanding *how* to complete my schoolwork.
I was absorbed by, fascinated with, and passionately interested in ballet, dolls, pianos, and certain books series, movies, and television shows. I thirsted to know everything I could about each, and jumped at the chance to tell anyone who would listen everything I knew about whatever passion my mind happened to be focused on at the moment.

My first passionate interest was Sesame Street. I spent hours arranging and studying the Sesame Street figurines that my mother bought for me.

In order to make it in the world, I forced myself to learn and record actions and responses I felt were *normal*. But behind the mask I created, was my real world, a place where I could be safely be myself. A place where I did not have to answer questions like, "What's wrong with you?" or "Why do you stare at things like that?" or "Why are you so weird?"

I became fairly skilled at playing the role of normal, but no matter how hard I tried, it was as if I had a small blinking sign on my forehead warning people that I was peculiar.

..........................................

The DSM criteria did not include a diagnosis of Asperger's until 1994. Numerous late-diagnosed autistics have been previously misdiagnosed with other conditions such as attention-deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), or schizophrenia.

Due to greater public education and awareness, more autistic individuals are being diagnosed.

If you suspect you may be on the autism spectrum, and you wish to be evaluated, choose your therapist with care. Unfortunately, the current diagnostic criteria does not capture how Asperger's manifests in many different ways (especially in adults). Sadly, there are a lot of clinicians and therapists who are still in the dark when it comes to diagnosing Asperger's--especially in females. An uneducated clinician or doctor may rigidly insist that to be diagnosed on the autism spectrum that you must not have any friendships. Being an introvert is one thing, having no friends is another.

No two autistics are exactly alike: If you've met one person on the autism spectrum, you've met one person on the autism spectrum.

Click here to take an online test where you may receive an Autism-Spectrum Quotient score. Though this test is an interesting tool for self-awareness, it does not replace an evaluation by a licensed professional, such as a neuro-psychologist or a psychiatrist.

Mirror Mirror on the Wall: Do You See Autism?

2009-03-08T21:19:00.000-07:00

Is autism in the eye of the beholder?

Autism Spectrum Disorders are characterized by sensory sensitivities, introversion, passionate special interests, unique (and often original) approaches to social interaction, and typically detailed thinking.

Despite the fact that autism is a spectrum, why do some people rigidly classify autism and expect that it should only look like:

Temple Grandin
Tito Rajarshi Mukhopadhyay
Sue Rubin
Lucy Blackman
A nonverbal intellectually disabled autistic person banging his or her head against the wall in between violent fits.

Employing assumptions, generalizations, and stereotypes lead some people to the dangerous territories of prejudice and hierarchy.

Below, follows Temple Grandin's opinions of "low-functioning" autistics (LFA), in addition to a response from Amanda Baggs.

Grandin:

Page 122 of the tenth-anniversary edition of Thinking in Pictures:

Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.
In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.

Baggs:

The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-”LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.

She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.

Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz (sic), or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.

......................................

My son is autistic. Strangers and casual acquaintances often seem surprised that my son is autistic. After all, he is wearing clean hip clothes and seems to be smiling and talking just fine. How can he be autistic?

It's not uncommon for me to hear something like: "He'll grow out of it! He's nothing like other autistic kids I've heard about. I would never have known."

Though I'm really proud of my son, I would like to point out that my son has neither been *cured* nor has he grown out of autism. He just happens to be a spectacular example of an autistic person who is getting his needs met from the benefits of acceptance, accommodation, appropriate education, integration, and opportunity.

Thanks to an early diagnosis, my son has had the benefit of years of occupational and speech therapies, plus he began receiving accommodations and appropriate education by one and a half years of age. Before therapy, my son made little to no eye-contact, violently banged his head against the floor when he was upset, and used little functional communication.

When I disclose my diagnosis as a person on the autistic spectrum, it is not uncommon for me to hear these types of remarks: "You seem so with it! Matter of fact, I have always admired how together you seem to have everything."

Meanwhile, I am thinking about how shattered this person's image of me would be if only they knew how dysfunctional, cantankerous, and unreliable some of my functioning skills are.

"But you speak so well and seem to have so much going for you. You're so articulate and thorough. I would never have known!"

What do you mean? Autistic people cannot be articulate and thorough?

When I hear these types of comments, which are often well-intentioned, it is reiterated that autism myths--including what autistic people should look and act like--need to be stamped out for good. Casually pointing fingers at autism is a subjective business.

Autism cannot always be seen. I could be talking to another autistic person and neither of us would know that we are both on the autism spectrum unless it was revealed. Autistics are everywhere. We hold all types of jobs. We also have uneven skills. Where we may excel at one task, we may struggle greatly with another.

Dora Raymaker and Me

2009-12-01T16:45:00.000-08:00

Who says autistic people can't make good friends?

2009-03-08T21:35:00.001-07:00

Mourning What is Different

Since when does pity keep a good thing coming? Pity party? No thanks!

Rather than mourning what is different, try understanding what is different.

Imagine you are about to embark on what you hope will be your best vacation ever. You've planned for almost a year. Everything is in order from A to Z. All of your hard work and detailed plans are culminating. Perhaps you're feeling a mix of excitement and trepidation, but most of all you're ready to get the show on the road.

Your plane has departed and you're off to Tahiti, Greece, China, France, Africa, or wherever it was you made plans to visit. Your big day has finally begun.

As the plane touches down for a landing, you realize that you cannot possibly be at your scheduled destination. You begin to panic as you come to see that the place you have arrived at is neither what you planned nor expected. You rack your brain trying to figure out what has gone wrong. Only there is no tangible explanation. You've done everything you could possibly have done. You demand answers, and maybe you even stomp your feet a bit, but only to learn that you're definitely stranded. You have no choice but to make the best of things. What are you going to do?

A. Go into denial.

*If you have chosen this option, immediately terminate your reading of this blog. Best wishes to you and yours.

B. Continue exhausting your options to no avail.

*If you choose this option, just scroll down and watch the video clip. Maybe it will relax your mind for a minute or two.

C. Accept this change and find out where the locals go to parrr-tay (party for you laymen).

*If you have chosen this option, then pat yourself on the back and continue reading.

I loved Choose Your Own Adventure books when I was younger. They were definitely an obsession for me. So, where am I going with this blog?

For parents, learning their child is autistic can bring out the worst, and for some, the best in life. Culture, environment, and personality are all directly related to how a family will deal with an autism diagnosis. Families are unique, and what works for one family may not work for another. Applying the one-shoe-fits-all theory to autism can breed disastrous results.

Is perpetual grief truly helpful and meaningful for those who are autistic?

There's a beautiful essay by Jim Sinclair titled "Don't Mourn For Us." I often recommend it to those touched by autism. The message of Sinclair's essay is to let people know that autism is not an appendage, an impenetrable wall, or death. Here is an excerpt:

"This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

Autistic people need acceptance, accommodation, access to appropriate education, innovation, integration, opportunity, and legal protection. Not pity.

Stop Insisting I Don't Exist!

2009-05-16T14:37:00.000-07:00

After reading "Assumptions, Assumptions" on the blog Normal is Overrated, it really got me thinking about people who repeatedly disregard the experiences of those who are either unique, different, or disabled.

As mentioned in the blog post above, people tend to assume abilities based on appearances. Living with an onslaught of erroneous assumptions, when a person appears *normal* to others, can lead to great frustration. It's simply maddening to be accused of exaggerating or imagining nonexistent barriers, especially when you are dealing with something that is often invisible (like autism or deafness).

Experiencing difficulty when it comes to attending to more than one thing at a time, such as having a conversation in a busy area with varied visual distractions, or making change at the store under stressful circumstances, or trying to speak effectively after reaching certain limits are all very real issues common to autistics.

People who may view an autistic person as *normal*, or who are unaware of the autistic person's autism, may be quite confused to suddenly see flapping hands, staring off into space, stuttering, or rocking in someone previously assumed to function in a specific manner. Stress, chaos, unpredictable environments, and even co-morbid conditions often leech the functionality, if you will, of autistic people. There is nothing new about this fact. What is often at the very core of autism is what is most often misunderstood.

There seems to be a significant struggle to understand how what seems so normal, comfortable, and habitual for the autistic person in one situation can become so foreign, anxiety-producing, and even detrimental in another situation. Again, stressing the reality of uneven skills in autistic people is of magnificent importance. Acceptance and understanding of this concept will hopefully lead to widespread inclusion, respect, and support of autistics.

In essence, because I present 'normally' in a typical scenario, people make the mistaken assumption that I am neurotypical, and are quite surprised when the autistic quirks start coming out of the woodwork, when they find I can't drive a car even after years of practice, or when they try holding a phone conversation with me and it ends up being made of Epic Failure To Communicate.

The above sentence from "Assumptions, Assumptions" is succinct, valuable, and dripping with daily life struggles pertaining to the prevailing misunderstandings of autistics, especially Asperger's or highly self-determined autistics. Family, friends, professionals, and even society who insist on repeatedly--and incorrectly--pointing out that personal perceived difficulties are imagined are doing little to encourage, corroborate, and empower autistic people.

Even Hans Asperger was able to pick up on the effects of stress and uneven skills by pointing out that autistic performance is often best under low-stress or spontaneous circumstances in comparison to performance under stress or new situations. Asperger labeled this phenomena as a peculiar sign of 'autistic intelligence.'

On the other hand, Rosalind Oppenheim, former Executive Director of the Rimland School for Autistic Children (now Rimland Services NFP), and the mother of an autistic son, was noted to have said that people who look incompetent, or who are nonverbal, may obviously be highly capable individuals. She further explained that such individuals deserve specific personal attention and insight in order to avoid assumptions based on appearance.

I'm tired of being told that my struggles are the same struggles everyone deals with. Yes, to an extent, this is very very true. The magnitude of my struggles, however, cannot be easily compared to the average person. Downplaying or making me think my struggles are all in my head, or that they are misconstrued is offensive and infuriating. Unjustly assuming things about autistics can directly lead autistic people toward low self-esteem, depression, compulsiveness, mistrust, lack of concern, and even worse, suicidal thoughts and tendencies.

Autism, and the traits that belong to it, are very real--whether or not it can be seen--so stop insisting that we don't exist!

Making History: 9/26/09

2009-09-26T15:48:00.001-07:00

Nothing About Us Without Us!

We are not puzzles, we are people.

Autism Speaks does not speak for me.

Autistic Self Advocacy Network is grateful to Oregon's KOIN-TV and KPTV FOX 12, for taking the time to hear ASAN's message. Both news stations brought positive attention to ASAN's cause, which aims to advance the principles of the disability rights movement in the world of autism, as well as to ensure equal access, opportunities, and rights in society for individuals on the spectrum.

The segments that aired Saturday, September 26th, are a monumental victory for the Autistic community, and for the Disability community as a whole. History was made when ASAN-PDX's protest against Autism Speaks was documented by two state news channels.

To have powerful footage of our political action to gain equal civil rights is golden.

To learn more, visit these links:

ASAN's Elesia Ashkenazy Interviewed (KOIN 6)

Interview with ASAN's Phoebe Loomis (KBOO FM)

'Poetic' autism film divides campaigners (New Scientist)

Protest Against Autism Speaks (KPTV 12)

Why Autism Speaks Does Not Speak for Us

Never, ever, ever, ever, ever, ever, ever, give up. Never give up. Never give up. Never give up. -Winston Churchill

The Fingerprint of Autism

2009-09-17T10:28:00.000-07:00

Autistic Spectrum Condition often evolves (in varying degrees) from childhood to adulthood. Being Asperger's autistic, there is a significant difference between my awareness and self-determination in adulthood when compared to my childhood.

I have several coping mechanisms and tactics in place that allow me to experience the world in a more productive way. When I was a child, I did not understand what it was that was overstimulating me, bothering me, or causing me to flip out at times. Now I do.

Autism is as individual as fingerprints. If you've met one autistic person, you've met one autistic person. A trademark of autism is uneven skills (ex: successful at a job of high status, yet lacking self-care skills, or smooth at conversing on specific topics, yet at a loss when the subject changes).

Autistic people have the same variance in personalities as the rest of the human race. We have unique personal challenges and differences.

Self-awareness is key to change and growth. Awareness is a natural part of human evolution. Some of us evolve more than others. Some of us are more self-determined than others. This is not a positive or a negative, it just is.

Why are people stumped when autistic individuals show the same variances and differences as any other part of humanity? Are all deaf people the same? No. Are all blue-eyed people the same? No. Are all autistic people the same? No.

Background, community, education-level, family relations, life experiences, etc. all play just as much a part in the autistic person's life as in any other human's life. Boxing autism into categories of severity, or appearance, is one of the main reasons so many females who are Asperger's autistic are misdiagnosed or skipped over altogether. This also applies to males who are less impacted.

Further reading:

Blasting Stereotypes in Autistic Females

Skills Here. Skills There. Skills Spiraling Everywhere.

The Truth About Autistic Females

World Autism Interviews: Kate Goldfield/New York

2009-10-20T17:20:00.000-07:00

It's not uncommon for autistic people to face ignorant assumptions and myths about autism from clinicians, community helpers, doctors, psychiatrists, psychologists, and even friends or relatives.

There is a myriad of misinformation about autism circulating throughout worldwide veins. Sometimes the people autistic individuals are counting on most, are capable of damaging those they claim to help, thanks to inexperience, lack of appropriate information, and narrow-mindedness.

It is often through an encounter with prejudice that an autistic self advocate is born.

Kate Goldfield lives in Ballston Spa, New York.

Elesia: Please tell us how you became a self-advocate.

Kate: It was just another day. I was in my junior year of college, six months or so after I had learned that I have Asperger's. I hadn't said much about it to anyone because I found no reason to, and I didn't know if it was the kind of thing people would be receptive to hearing. After all, I was still trying to figure out Asperger's for myself.

Everything changed after an incident at my college library.

One day, I was especially groggy and out of it, as well as overwhelmed. I felt as if I couldn't wake up or focus. The smallest things overstimulated me, such as people's voices or people walking around. I needed a break from my work, so I went into the basement bathroom of my college library. Hardly anyone ever uses it, so it assures the most privacy. I entered a stall and locked it behind me, letting my mind run loose with all of its thoughts and feelings. Some of the things on my mind, I said aloud, as self-dialogue is a big stress reliever for me. If a person entered the bathroom, I immediately stopped talking.

Thoughts came and went so fast that it was overwhelming. Thoughts were pushing at my brain to get out. My thoughts could not be quieted until I said them aloud, or until I reasoned through the problems I was struggling with out loud to myself. Often, I went down to this basement bathroom when I needed to work something out in my head. After spending a few minutes in the bathroom, and working through my thoughts, I always returned to my task.

Though it is weird to talk to yourself, doing so is just one of the many coping mechanisms that an adult with Asperger's may use to better navigate and cope with the world.

On the day of the incident at my college, I heard someone enter the bathroom, so I stopped talking. Ten minutes or so later, I heard the door open, and a woman asked me if I was okay. Used to hearing that question, I said, "Yeah, I'm fine. Just a bit overwhelmed. I'll be fine."

Expecting to be left alone, I was instead asked, "Are you sure?"

The next voice I heard was that of a college security officer asking me to exit the bathroom. I did so, gasping as I realized that the college security was involved.

"Why were you in there so long?" asked the lady standing near the security officer.

"I was just trying to calm myself down. You know...just taking a break." I hesitated before adding, "I have Asperger's Syndrome, and one of the symptoms is severe sensory issues and overload. If I take a few minutes for a time out, I feel better."

The lady who had started this whole incident, turned to the security officer and said, "I'm a psychiatric student at John's Hopkins about to get my degree. She can't have Asperger's because she can talk. Asperger's is like autism, and she couldn't talk if she had autism."

I tried to convince this lady that she was mistaken, and that Asperger's is very different from what she may have learned. I mentioned that people with Asperger's certainly could talk, and often did so quite well. In response, she threw around a bunch of loaded psychiatric terms about emotional instability that obviously impressed and scared the college security officers. In turn, they would no longer listen to me.

"We need to take you to the office and figure out what to do with you," said one of the officers.

"What? I'm supposed to meet someone in five minutes. I have work to do," I said.

"No. You need to come with us."

I was taken to a cavernous gloomy office in the basement of the library that I have never been to. I was questioned for about an hour, about both Asperger's, and my behavior. I was shaking and so overwhelmed that I could barely talk, but I managed to defend myself, even though nothing I said made a difference. Over my head, there was talk of calling the paramedics to escort me to a hospital. Then a member of the Baltimore City Police was called in for reasons I still do not quite understand. I was not yelling at or threatening anyone back in the bathroom. I had simply been talking to myself.

The officers called people I knew to try and make a confirmation, but no one was available. I tried to convince them that I was fine, but again, they would not listen. I was desperate to keep the officers from taking control over me, God forbid send me to a hospital when I was just taking a bathroom break from my sociology homework. An hour later, one of the officers said, "She really does seem fine now. She seems much better." Inside, I rolled my eyes, and asked to be dismissed. Finally, I was given their consent.

Shaken, I left and made my way back to my dorm room to process everything that had happened to me. I met my friend that I was supposed to meet earlier, and told her everything that had happened. She was appalled.

Eventually, I received several heartfelt apologies from both the Residence Life, as well as the Security offices on campus. I never received a letter from the ignorant lady from John's Hopkins who had started the incident, and I often think about writing her a letter.

This situation gave me a desire to communicate the experience of Asperger's to the world. I want to lay it down unequivocally: I am what an adult with Asperger's looks like. Please be aware that we may have different needs than others. Please do not be alarmed if we present behavior that is unfamiliar to you.

Motivated, I wrote an editorial about what Asperger's is, and sent it to the Baltimore Sun. I was stunned a few days later when I received a phone call informing me that my article would be published. The article ran on Thanksgiving Day, and I got more than two dozen email replies with people telling me that they saw their son, daughter, friend, or loved one in the words I wrote. I was stunned by the response, and very happy. I felt validated, and it was wonderful to know that I made a difference.

From there, I was hooked on self-advocacy. I have been invited to speak at two autism conferences in the Northeast. Essays of mine have been published in autism-focused magazines.

I have found my voice; a voice that allows me to educate the world on what being an adult with Asperger's is like. A voice that gives me a sense of meaningfulness and purpose.

I shudder to think of the fate of the people that lady from John's Hopkins has treated. I still wish I could have a talk with this lady. But who knows, maybe she has read one of my articles. If it weren't for her, I'd never be doing what I love, and so maybe it was a good incident after all.

Elesia: Thank you for sharing your story.

If you've met one autistic person, you've met one autistic person.

Autistic Aspirations: Do We Have the Same Chances?

2009-09-08T14:00:00.000-07:00

I love books. I love writing. That's a photo of the Young Adult section at Forbidden Planet. That's right, the awesome UK bookstore on 179 Shaftesbury Avenue (London). There's also a Forbidden Planet in New York City.

Current goal = published author.

Imagine the excitement of having your novel showcased in a bookstore window for passersby to see. How about a shelf dedicated to your book series?

Over the last two months, I've been on an Aspitude! hiatus in order to complete a manuscript. My project is a Young Adult read that fits into both the multicultural and paranormal genres. Will it be published? Will it be graced with an intriguing cover? Will it be placed on the same shelves next to other young adults titles we know and love?

Getting published essentially boils down to the skill and luck of the writer. That noted, if my skill and luck are maximized, will I be passed over anyway because I am different?

Individuals with unique communication styles often remain in the dark, living behind shadows from which they are allowed only to peek and watch from, cut off from equal participation in a world that spins too fast.

Writing is my ideal mode of communication. Written words come more quickly to me than speech. Perhaps I can compose decent query letters to writers agents, but am I convincing over the phone? Sometimes I do things that seem strange. Sometimes I don't look people in the eye. My skill set is uneven (check out: Skills Here. Skills There. Skills Spiraling Everywhere.). Despite my differences, I just want to be seen for who I am inside.

All people have fears. But for some, we carry not only our alloted fears, but our fears of being passed over or misunderstood because we are different.

Disability Writes

2009-11-07T08:55:00.000-08:00

What is a normal human, and who is allowed to define the boundaries of normal? Does *normal* include the fact that no matter how far technology reaches, disability will always be an intrinsic part of human diversity and society? Though some people are born disabled, most people, as they age, will experience some degree of disability, whether mild, moderate, severe, or profound.

Disabled individuals have a right to be disabled. In place of overeager benevolence and pity, disabled people need innovation, reciprocity, respect, and support to be who are they are in life. There is nothing horrific or shameful about being different, disabled, or unique. Horrific and shameful are words that belong to the negative attitudes, prejudice, and stigma many disabled people face.

Here are some books related to both disability rights and disability studies recommended by a few acquaintances, friends, and me.

Bending Over Backwards: Essays on Disability and the Body by Lennard Davis and Michael Berube. This book takes a critical look at what we define as normalcy.
Claiming Disability: Knowledge and Identity by Simi Linton. This book offers insight into the social model of disability verses the medical model.
Deaf Subjects: Between Identities and Places by Brenda Jo Brueggemann. This book explores the power of American Sign Language, as well as the diversity within the Deaf community, inclusive of deaf identity.
Disability Theory by Tobin Anthony Siebers. This book has been touted as a field-defining book. Melanie Yergeau especially liked Siebers' discussion about how architecture and our desire for beautiful buildings reflects our desire for beautiful bodies.
Embodied Rhetorics: Disability in Language and Culture by Professor James C Wilson PhD et al. C.S. Wyatt shares that this book is a good overview and that he especially likes "Am I MS?" and "(Working with) The Rhetoric of Affliction."
No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro. This book explores societal views on disability.
Open Your Eyes: Deaf Studies Talking by H-Dirksen L. Bauman (Editor). This book has many Deaf contributors and offers a myriad of valuable insights on the true definition of normalcy.
Recovering Bodies: Illness, Disability, and Life Writing by G. Thomas Couser. Melanie Yergeau relates that Couser describes the ways in which the literary marketplace restricts disability writings into stock and overdetermined narratives, and also in the ways in which people with disabilities (PWD) have begun to *speak* back.

A response from C.S. Wyatt to common disability myths about autism:

It's good to know we [individuals on the autistic spectrum] go against the stereotypes of all being physicists, math savants, or computer geeks. Oh yeah, I came from programming. Still, I think any cultural studies/anthropological views of disabilities is useful and proves we not only aren't stereotypes, but that we have interests beyond whatever it is people are using to define us.

AASPIRE/ASAN: Project Gateway

2009-10-27T09:12:00.001-07:00

Click me to head to the project!

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults.

The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

encourage the inclusion of autistic adults in matters which directly affect them;

include autistic adults as equal partners in research about autism;

answer research questions that are considered relevant by the autistic community;

use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison

Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

Please pass this information along to your friends!

World Autism Interviews: Applied Behavior Analysis with Anonymous

2009-10-18T08:06:00.000-07:00

You have to go to these institutes and just observe a full day to get a sense of the chaos around you. This chaos breeds hostility, poor judgement, and abuse. Imagine: six or more kids with six or more therapists sitting in a plain room with very colorful cube-like plastic furniture, and televisions on every table top. Different movies being played at different times for brief moments and then screaming from one corner, a full-on wrestling match in another, with six therapists each giving different demands and offering artificial praise. It is a lot of stimulation. -Anonymous

*Please note that this interview is not an attack against well-intentioned parents who use Applied Behavior Analysis. I personally know a few parents who employ ABA in the home and these parents are great people with their children's best interests at heart. ABA is, however, controversial and questionable.

Behavior analysis is a science that studies the behavior of people, as well as the behavior of animals. It is a science (though some note it as a pseudo-science) attempting to explain, predict, record, and understand behavior. Applied Behavior Analysis is used as a teaching tool for autistic children.

Some examples of controversies surrounding ABA: lack of autistic rights (ex: psychodynamic acceptance), misinformation surrounding ABA, discrepancies in the training of ABA practitioners despite the existence of a Behavior Analyst Certification Board, widespread misunderstanding of autistic behavior, et cetera.

Interview with Anonymous

Elesia: What drew you into the field of Applied Behavior Analysis? What type of training did you receive, and what qualifications were required for you to be hired?

Anonymous: I took an Experimental Analysis Behavior course where I was exposed to Behaviorism. Toward the end of the term, my class completed an introduction to B.F. Skinner's Verbal Behavior. A guest speaker, the director of a language treatment clinic, visited my class to give a presentation. The director showed us how the theories we had studied applied to treating children with developmental disabilities. He spoke about his cases, mentioning that his clinic had over an 80% success rate. I was hooked, so I applied to intern. I loved playing with the children, as I related to them well, plus I had a knack for working with difficult children. I had just turned twenty-one years old, and this work gave me a way of understanding my own social interactions.

After graduating with a B.S. in Applied Psychology, I had to go through a one-week ABA training again, where materials from both my class and interning were reviewed. Additionally, there were trainings on how to respond to difficult behaviors by giving alternative demands, ignoring the behavior, et cetera. Assault training was also incorporated where we were taught combat moves for defense of both the children and ourselves. We also learned policies and protocols.

As far as qualifications, the only requirement was to possess a B.A. degree, preferably in psychology, social work, or another similar concentration.

Elesia: How long did you work as an ABA therapist? Did you ever begin to have misgivings or second thoughts about this work?

Anonymous: I officially worked as a therapist for one year.

One day, I was sitting next to one of my favorite clients. He was the sweetest nonverbal foodie (he ate everything) who smiled often, and listened well. We had just gone through his set of verbal training programs, and we were having a relaxing break. He was stimming [ex: finger flicking/rippling, humming, rocking, spinning] on a musical toy and then he began hyper hand-flapping. My job was to click each hand flap and *reset* his hands every time. I sat back in realization and wondered to myself: is this treatment truly helping him to become independent? Will he be institutionalized for his entire life? Why does it matter if he hand flaps? Will he find love in his life?

During this rush of emotions, it was like I saw a film reel pass my eyes, and I could see my client sitting in a home twenty years into the future, having never been given an opportunity to grow to his full potential. He had been stunted by diagnosis after diagnosis, prescription after prescription, and treatment after treatment.

How do we expect to *socialize* someone if we never give them a chance to interact socially, and we treat them as if they are rehabilitated animals at a nature center of some sort?

I began to take on a new attitude regarding therapy. I changed the way I connected with the children I worked with, avoiding operationalized responses, unless I was being monitored. Though I utilized the philosophy I was trained in, I wanted mostly to make sure the kids were able to have fun, to feel love, and to have a chance to communicate with me in their own language. I formed real friendships with my clients.

Consistent environments are conducive to learning, but boredom hinders learning. I wanted to motivate learning, and not just prove learning to parents, insurance companies, and supervisors.

Due to the lack of joy in many of the children I saw, several of them exhibited depressive behaviors. There were few toys in the playrooms, and so I requested that new toys be purchased, especially since the center was charging exorbitant fees for treatments. Was there no person who could not stop to think about what those children wanted?

Some therapists assume they are great at knowing what children think because children's thoughts--in their minds--could be nothing more than simple.

Elesia: Did you ever witness any incidents that you felt either violated human rights, or disregarded a client's, or an individual's, right to dignity?

Anonymous: There were times when I witnessed a therapist become fed up with a particularly difficult client, and this therapist would pinch the nipples to get him to stop the annoying behavior. The nipple pinching method was shown to me by my closest colleague. Pinching was a common method of abuse I witnessed. Pinching is easy to do, as well as difficult to observe; we were all so hands-on with the children.

Elesia: Thank you, Anonymous, for your interview.

Further reading:

Is One Style of Early Behavioral Treatment for Autism 'Scientifically Proven?'

The Misbehaviour of Behaviourists

What is BCBA [Board Certified Behavior Analyst] anyway?

Militant Blogging

2009-03-10T14:28:00.000-07:00

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:

Militant Curists
Militant Culturalists
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.

Autism Speaks Does Not Speak For Me

2009-09-23T18:39:00.000-07:00

Hatred, bigotry, and prejudice is taught. But we are born to love. Or are we...?

The latest from Autism Speaks:

I am autism. I am visible to your children, but if I can help it, I am invisible to you until it's too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'Who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

There are no words to describe the feeling in the pit of my stomach after both reading and listening to the above message from the latest Autism Speaks "I Am Autism" video. Even more heartbreaking is that this video was aired at a United Nations conference. United Nations is concerned with peace and security, human rights, and humanitarian affairs. There is nothing about the above message that speaks to my soul about human equality and human rights.

Autism Speaks' "I Am Autism" video perpetuates a message of fear and intolerance regarding individuals on the autism spectrum. Is it ethical for Autism Speaks to rely upon alarm and pity-mongering to raise funds by utilizing discrimination, fallaciousness, and ignominy?

AUTISTIC RIGHTS = HUMAN RIGHTS

Autistic people need acceptance, accommodation, appropriate education, dignity, integration, legal protection, opportunity, respect, tolerance, and understanding. Not hatred, misguided awareness, and misconception. Is it commendable and righteous to generate monies by using erroneous fear-based tactics and horrific solicitations that do not ensure quality of life for individuals on the autistic spectrum?

We must renounce injustice through service. Further reading:

Autism Speaks Hits A New Low

I Am Autism & The Embarrassment Trope

I Am Autism Video: Autism Speaks Gets It Wrong Again

Not Autism Speaks

Responding to "I Am Autism"

The Latest Propaganda from Autism Speaks and My Response

World Autism Interviews: Phil Schwarz/New England

2009-03-09T10:16:00.000-07:00

New England

Interview with Phil Schwarz

Welcome to the first of a series of Autism Interviews.

Today's interview is with Phil Schwarz. Phil is the Vice-President of the Asperger's Association of New England, as well as a board member of the Autism National Committee. He is the father of an autistic son and is an Asperger's autistic adult himself. Phil works as a software developer.

Shamiraash: Tell me about your family and your journey into the world of autism.

Phil: I'm 52, Aspie, married to Susan, 55, nonautistic; we have a son, Jeremy, 18, autistic, and a daughter, Rachel, 20, broader phenotype. I'm a software developer, Susie is a health care manager at a nonprofit neighborhood health center, Rachel is a sophomore at Sarah Lawrence College in New York City, and Jeremy is midway through an ungraded high school program for teens on the autism spectrum.

Autism has been in our family for a long time -- undiagnosed almost-certainly-Aspie relatives and relatives with "Cousin" conditions on both sides of both my and Susie's family. But we only really discovered it when Jeremy's toddler-age development became atypical in autistic ways: stalled development of speech, lots of repetitive simple sensory play, little motivation for social interaction or shared attention.

We didn't know much about autism to begin with, and feared the worst. Our initial encounter with reliable information about autism was actually a relief of those worst fears: it wasn't degenerative, institutionalization was not a foregone conclusion, nor was severe intellectual impairment. We were very lucky to be able to get Jeremy diagnosed by Margaret Bauman, one of the few real experts in the field back in the early 90s.

The more we read about autism, the more we learned about forms of autism without impairment of expressive speech like Asperger's syndrome. And the more it became clear that AS was a coherent explanation for my own developmental trajectory. So 10 months after Jeremy was diagnosed, so was I.

We were also very lucky to have found the few Internet autism resources in existence in those early years, such as the St. John's University Autism Listserv, and in particular to have begun to meet several of the few autistic adults on the 'Net in those days. I think the two pieces of writing which most strongly influenced my emerging response to autism were Oliver Sacks's biographical essay about Temple Grandin, "An Anthropologist on Mars", and Jim Sinclair's landmark essay "Don't Mourn For Us". (Now, many years later, in this age of YouTube, I would place Amanda Baggs's "In My Language" alongside "Don't Mourn For Us" as essential reading-and-viewing for families new to autism.)

Shamiraash: As you know, autism is quite a political topic these days. There is both an Autistic Community, as well as a cure-focused community. Where do you stand and why?

Heh. I'm definitely part of the autistic community by virtue of simple biology, as is most of my family. (I joke that Susie is our token NT.) It simply couldn't be any other way.

I think the biggest mistake the autism-curebies make, is that they fail to recognize the distinction between handicap secondary to autism, and autism per se. Lack of expressive speech is a handicap secondary to autism. Autistic ways of thinking, sensing, expressing emotion, allocating attention and interest, and so on, are the real core elements of autism. When we "evil neurodiverse" advocate against curing autism, it is the latter that we seek to protect from eradication. We have *no problem* with developing and implementing legitimate, caring, humane measures to mitigate the handicaps secondary to autism. That mitigation can be done in a way which empowers and builds self-esteem and comfort and ease with one's own identity, or it can be attempted in ways which run roughshod over those things. We object to the latter, but despite what those who fear our empowerment as encroachment upon their hegemony claim, we *support* the former.

I honestly don't understand the degree of animosity and anger, of black-and-white, false-dichotomous thinking, that goes on in the landscape of autism politics. I think the technical term for the state of autism politics is "Way F*%#ed Up". I wrote about that, more than a dozen years ago, on the *St. John's University Autism Listserv (*click here to read Phil's essay).

Shamiraash: We are both parents of children who are on the spectrum. Please tell me about your children, as well as how you felt when your son was diagnosed. What do your children need most in order to reach maximum potential?

Phil: I think I answered some of this question by going on too long (heh, love me, I'm an Aspie) in answering the previous questions :-).

I think we were *relieved* to learn what we learned, when we finally got reliable, legitimate information about autism, and when we met and became friendly with adult members of the autistic community, whose own personal histories often gave us glimpses of what Jeremy's future -- potential as well as problems -- might be.

Susie had a harder time coming to terms with autism as not being entirely a bad thing. I think she had more solidly formed nonautistic expectations that she had to let go of, than I did. I do sometimes wonder about the greenness of the grass on the other side of the fence, what it would have been like to raise a completely (profoundly - heh) nonautistic son or daughter. (A challenge, in some respects, for a father with an Aspergerian temperament!)

I think the most important thing for Jeremy is to not be underestimated -- because of the autism label, because of the way he interacts socially, because of the areas of social knowledge that remain more foreign to him than to nonautistic age-peers, because his self-confidence can sometimes be vulnerable. For Rachel, it's to become organized and confident enough to use the considerable intellectual talent she has been blessed with.

Shamiraash: What is important to you as an autistic adult?

Phil: Finding and maintaining balance and moderation, in things that overfocus can so easily lead me to become unbalanced in. Being there for my wife and children, sometimes in ways that aren't innate or intuitive for me, but that are important to them.

Shamiraash: How do you involve yourself in bringing about the political change and progression you would like to see for individuals who are on the autism spectrum?

Phil: I do what I can by serving in the lay leadership of a few progressive autism organizations: the Asperger's Association of New England, where I serve as vice-president; the Autism National Committee, where I serve as a board member; Autism Network International, where I serve on the conference program committee. I also serve on the board of my local chapter of the Autism Society of America, in the (some people tell me vain) hope that working within that organization from the bottom up, I can help change it for the better. The ASA is the humongous aircraft carrier among the flotilla of autism organizations. It takes many tugboats to turn an aircraft carrier around. I try to be one of the tugboats pulling the aircraft carrier in the right direction.

Shamiraash: What do you feel is the greatest obstacle toward bringing about these changes?

Phil: That so much of the media, mind-share, and money in autism politics is in non-progressive hands. That the picture the general public gets of autism is still badly distorted. That there is so much misinformation, misconception, myth, and quackery surrounding autism. The history of autism, ever since Kanner and Asperger, has been one senseless frantic chase for silver-bullet "cures" after another. That has to stop. It isn't doing us any good. Too many autistic children age into adulthood without adequate support, without adequate employment, education, housing, access to quality legitimate health care, and opportunities to live fully in their communities as consumers and citizens. That has to change.

Shamiraash: If you could share only one message about autism with the public, what would it be?

Phil: That autism does not *have* to be a tragedy. Stop. Think. *Listen* to autistic people themselves. Read and view what autistic self-advocates have written and filmed. Understand that there are self-advocates at all points on the spectrum, not just so-called "high functioning". Understand the distinction between handicap secondary to autism, and autism per se -- then go forth and mitigate the handicaps, nourish and support the autistic ways of thinking, sensing, feeling, and encountering the world, and help your autistic loved one grow into living fully and capably as an autistic person.

Finally -- speaking as both a parent and a self-advocate -- I urge parents, in particular, to read this short and eloquent essay by Bev Harp (click here). And then to consider how we can become allies.

Check out Phil in the documentary film trailer for Loving Lampposts.

World Autism Interviews: Norah vd Stel/ Netherlands

2009-03-09T10:42:00.001-07:00

Netherlander ducks
Domtower
Utrecht Centraal

Interview with Norah vd Stel

Norah is diagnosed with Asperger's. She graduated from Universiteit Utrecht where she obtained a Bachelor of Arts in Translation. Unfortunately, she sadly failed to obtain her Master's degree due to lack of services and supports.

Though she has a wide range of interests, her special interests (or 'perseverations') are autism, language and languages, PC gaming, reading and story creation, and Japan.

Norah does online activism for autism, as well as other things how and where she can. She has plans to try and improve, in her own way, the situation for autistic people in her own country in 'real life'. If you are interested, her blog can be found here.

Shamiraash: Tell me about your life in the Netherlands. How old were you when you received an Autism Spectrum Disorder diagnosis?

Norah: I found out I was autistic when I was about 11, and got a diagnosis of Asperger's at 24.

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

Norah: My mother and one of my brothers are also diagnosed, and I have many other family members I suspect are on the spectrum and would be diagnosed if they went in for diagnosis, but will not elaborate because they may not know or care, or may even be averse to the idea.

Shamiraash: What city do you live in and what is the housing situation like for autistic people? Also, what type of housing do you inhabit?

Norah: I live in Leiden, sort of a medium-sized city over here, but it is more like an overgrown village. In this town, the housing situation for anyone who needs social housing is extremely bad. If you are autistic, but do not live in some sort of special accommodation (and if you are not rich enough to get a loan to buy a house or rent expensive housing), you will be in the same situation as the others who need social housing. My partner and I live in an apartment building, also social housing. We were lucky to get this place, because the waiting line for social housing in this town is 10 years (if you are looking for your first ever place to live on your own, and our other apartment didn't count since it was University property) and we were only halfway through that line. However, for some reason no one wanted this place so it got rejected 44 times and then it was our turn to choose. Since we were about to be thrown out of our old place, we said yes (but we also saw nothing wrong with the apartment or the neighbourhood: I still don't know why all those people rejected it).

Shamiraash: Does the Netherlands provide adequate services for autistic people?

Norah: No. But right now the Netherlands doesn't provide adequate services for any kind of disability group (or other groups that need them, like the elderly), so it's not like we're a special exception. It actually used to be somewhat better, before a series of bad governments kept cutting funds from the care sector. It might get better again from now on, if we protest hard.

Shamiraash: Where is the most improvement needed, for autistics, in the Netherlands?

Norah: That is a hard question to answer. I guess it all depends on where you're at in life. If you're of school age, the biggest problem might be school or transportation to school (or wherever you spend your day). In my case, and I'm guessing many other adults are here as well, it's better job accommodations and better housing situations and better services in and out of the house that are needed.

Shamiraash: What services, for autistics, are run efficiently (if any)?

Norah: A few positive points: we have Autism Centres throughout the country, usually one is nearby, if not in town, then the next town over (and this is a small country). They have a lot of knowledge and can advise us, and usually also provide certain services. MEE also offers good and practical service for the short term (though some people have bad experiences, that usually has to do with the individuals they meet there, the service itself is good). And although it needs work and can be an unpleasant process to go through, it's not too hard to get disability income (Wajong) if you're autistic and need it.

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

Norah: I guess I am, since I participate online.

Shamiraash: Tell me about the Autistic Community in the Netherlands.

Norah: I'm more a part of the international Autistic Community than anything specific to the Netherlands. I used to participate in Dutch forums and such as well, but I dropped out after a while due to the (and I will probably offend some people if they read this) whiny and depressing atmosphere there. There was just too much nonsense going around. There is that too in the international community, but since it is so much larger there is also a larger part to be found that I can be a part of (or feel comfortable with). So by now I'm pretty out of touch with any larger Dutch Autistic Community, though I do follow the blogs of a few Dutch autistics and am a member of some Dutch autism groups on Hyves (a networking tool like Facebook).

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

Norah: The fact that it is so large: I can find people who are like me or who have interesting insights to offer so easily over the internet. Seeing people who disagree and their reasons is also educational (and it's not such a limited group as in just one small country). People can offer advice and tell you about how they do certain things in their countries. The internet also makes it possible to more easily connect to other autistics: in real life, support groups or groups that get together are largely for and by parents (or they do stuff I don't find even remotely interesting :D).

Shamiraash: If you could spread one main message to the public about autism, what would it be?

Norah: I honestly can't think of one single thing I would want them to know over anything else. I could give them a list of books to read...

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

Norah: There are some special schools for children in general who have learning difficulties, behavioral difficulties, or both, and there are a few schools especially for autistic children, but mostly children will have to try to struggle through regular schools. Some government some time back decided that being segregated wasn't good for kids, so they should go to regular schools with some help. Unfortunately, they were too dense and/or cheap to realise that their system for helping these kids go through regular schools was painfully inadequate. Children are supposed to go to regular schools and receive any special help they need through what they call a 'rugzakje' (diminutive form of backpack), which is: funds to pay for the help. It's not working. Which has resulted in many autistic kids just sitting at home doing nothing, sometimes for months and months (despite school being compulsory until 16), because the rugzakje doesn't work, and there are now fewer special schools and the ones that exist are often already filled beyond capacity. (Keep in mind that I have no personal experience here: when I went to school the system was different and I have no kids of my own. My information comes from our country's National Autism Society. I trust it is accurate.)

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

Norah: I guess it is a mix of the two. As far as I'm concerned, of course, still way too little understanding and openness. A lot of people will be able to 'blissfully' go through life never even having to think about it until they turn elderly and might need some extra care (or their parents do). A lot of people I have told my diagnosis, at least, seemed sort of uncomfortable, sad, or both, but they come around easily when I do not accept this. I think there are a lot of people whose general opinions have not yet been formed (at least concerning autism).

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

Norah: The NVA (our national autism society) offers a relatively balanced view, focusing mostly on the need for more and better services, and also research somewhat. I am not dissatisfied with their actions, though I feel they need to include autistics more, and there are a few instances where they still tend to slip into the whole 'suffering, woe and pity' thing. There may be more, but I have either not heard of them, or do not like them.

Shamiraash: Just for fun, what is something about the Netherlands you think other people would be interested in knowing?

Norah: Not so long ago, someone from another country asked me why we call ourselves the Netherlands. His thought ran something like this: "Who would want to call themselves low? Are you all depressed or self-loathing?" I had to laugh and told him that it refers to the actual land: it's low. We sink, quite rapidly in some spots :D. Large parts of the country lie below sea level. We're mostly flat, apart from a few spots way in the east of the country. Also very watery. But apparently, a lot of people who are not from here have no idea. I wonder how many other people walk around with similar ideas :D.

Shamiraash: Are there any Netherland myths you would like to correct (lay people over here in America may think you wear clogs, build water wheels, yodel, and drive Volvos)? Please set us straight.

Norah: Maybe you could tell me some more common myths about Dutch people that exist in other countries. Then I could dispel them (or not :D). While some people drive Volvos, the car brands are very varied here ;). Yodelling is even the whole wrong country: that's for mountainous regions in the alps. Clogs hurt your feet: try it sometime, plenty are still around in tourist-trap shops in the centre of Amsterdam. I prefer regular boots and shoes, thanks. Water wheels are a bit redundant in this day and age, don't you think? Granted, they look pretty :P.

I would like to extend a hearty thank you to Norah. It is a magnificent treat to be in touch with someone outside of America. What an honor it is to receive news from a distance.

World Autism Interviews: Phoebe Loomis/Portland, Oregon

2009-03-09T10:32:00.001-07:00

Semiotics: the study of sign processes.
Phoebe and her daughter Raven.
Phoebe in first grade on Grandparent's Day.

Interview with Phoebe Loomis

Phoebe Loomis lives in Portland, Oregon. She is a self-diagnosed Asperger's autistic. Her oldest daughter, Raven, is autistic. Phoebe co-directs Portland Autistic Self Advocacy Network (PDX ASAN). She aspires to write and publish a graphic novel. Click here for her MySpace link.

Shamiraash: Tell me about how you ventured into the world of autism.

Phoebe: That's hard to pinpoint. I think I had an abstract concept of what
autism was when my mother worked as a custodian at an elementary school
with an extensive program for children on the spectrum. She would come
home and tell horror stories of cleaning the bathrooms. I think we all
were exposed to Jenny McCarthy's crusade against autism with Autism
Speaks but I never had an educated view until my daughter was diagnosed
and I immersed myself in books on the subject.

Shamiraash: Your oldest daughter, Raven, is autistic. When did you first suspect that there is something unique about Raven?

Phoebe: I think I knew there was something lagging with her communication at
about 6 months of age. It was always hard for me to say something was
"off" about her when I saw so many similarities with myself. How do you
notice someones lack of eye contact when you don't meet their gaze? The
first real red flag was when she got into the habit of hitting her head
against the wall. Seemingly unprovoked she would launch herself full
force against the walls. If I was holding her she would hit her head against
me. She would even grab anything nearby that was hard enough to hit
against her head. When I heard Michael Savage's despicable words about
autism being fabricated 90% of the time I broke into tears and knew it
was time to get Raven diagnosed.

Shamiraash: How did you feel when she was diagnosed?

Phoebe: I felt like I was finally taking the right steps for her. She had been
having the issues with self-injury I mentioned and it was known within
my circle of friends and family that something needed to be done. I
think the word "autism" was in the air for at least a year before she
had the appointment for diagnosis.

Shamiraash: How do you feel about the current services she is receiving?

Phoebe: I am so thankful to have all resources available to her that are. She
goes to neurosensory therapy once a week in Oregon City. I noticed a
huge drop in her self-injurious behavior after only a handful of visits.
She is in an integrated classroom with about 14 students. Half are
typically developing and the other half are children who fall into the
category of "special needs" like Raven. There are a number of teachers
and a speech therapist who comes in weekly.

Shamiraash: When do you disclose your daughter's diagnosis to others?

Phoebe: It depends on the context. With anyone who was already a part of our lives it was almost a celebratory announcement. When other young
children ask me why she's ignoring them I'll give the simpler
explanation that she has trouble with sensory issues and relating to
others.

Shamiraash: How do you handle ignorant public comments?

Phoebe: With children especially you never know what you are going to hear. If Raven is having a meltdown in public it's not uncommon for another young
child to ask me if she's okay or what's "wrong" with her. I don't have a
terrible time with type of innocent ignorance but I do have trouble with
adults who have already made up their mind what the word "autism" means.
I get a lot of NT people spouting Curebie nonsense who don't even know
they are doing it. I guess it's convenient to be Asperger's autistic
myself since my lack of eye contact tends to keep most people from
starting unsolicited conversation with me.

Shamiraash: What do you feel your daughter needs most in order to reach her maximum potential?

Phoebe: I think she needs the type of understanding and supportive environment that she is receiving from school and therapy. Visual schedules have proven to work amazingly well for her. I think communication between
myself and any teachers or therapists is essential. Now that I have a
clearer understanding how my own brain functions I have no problem
asking for everything important to be given to me in writing.

Shamiraash: After Raven's diagnosis, it came to your realization that you are also on the spectrum. Learning that you are on the spectrum, later in life, does not change who you are and what you have always felt inside. How would you explain this key point to others?

Phoebe: The way I have explained it is that I haven't learned anything new about myself but I have learned so much about how a typical mind works. I had
always been told, and assumed it to be accurate, that I just wasn't
trying hard enough in life. I scored very highly in aptitude tests but
couldn't seem to do things that were so very simple for most people.
Things such as reading non-verbal cues and facial expressions were logic
based rather than instinctive. I hadn't realized the energy I put into
things that are natural for the majority. One of the greatest epiphanies
I had was in discovering it wasn't all that uncommon for Aspies to
experience "Wrong Planet Syndrome". From the youngest age I can remember I had an elaborate mythology built around Plutonian origins.

Shamiraash: As an adult on the spectrum, what services and accommodations--that you need most--are currently lacking?

Phoebe: Right now I am having a difficult time getting a formal diagnosis. I
honestly don't even know what my options are. I would like get back into school for Fashion Design and perhaps get the option to be away from any fluorescent lighting.

Shamiraash: What would you like to share with people who have a hard time
recognizing that Autism Spectrum Disorders are not a one-size-fits-all
package?

Phoebe: I think it's crucial that people don't overlook the word SPECTRUM. Many people have already formed what they think the word "autism" means.
Within the Autism Community there even seems to be a line drawn firmly
between the terms "autism" and "Asperger's Syndrome" as if there is
something so terrifying about the term. I refer to myself as being
Asperger's autistic.

Shamiraash: What advice do you have for parents of newly diagnosed autistic
children?

Phoebe: I would definitely say read everything you can get your hands on but
don't let anyone else make up your mind. Research is crucial.

Shamiraash: Please share something you think is extremely important for the
public to know about autism.

Phoebe: Autism is not a disease to be caught or cured. For many people it is
necessary to get treatment for co-morbid symptoms such as anxiety or
obsessive compulsive disorders. I am not against any one person getting
proper therapy or, if need be, pharmaceuticals but I think the medical
community is too apt to prescribing medication at young people without
really delving into what their core issues are. It wasn't so long ago
that exorcisms were held on autistics who were believed to be possessed.

Phoebe would like me to include a link about semiotics, which is the study of sign processes (semiosis). Click here to read more.

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

2009-03-15T12:06:00.000-07:00

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

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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).

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.

Shamiraash: 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.