Participation List 2012

We're getting ready for Autistic Speaking Day 2013, so before I forget (many times again), here is the participation list for 2012!!

Thank you all for your contributions and to all of our volunteers for helping make ASDay a success!!  


Autistic Contributors

Communication and Me! by Autiemom at Tales from an Autism Family


Flapping To Kalamazoo (a poem for Autistics Speaking Day) by Rebecca Loggenberg on Autistic-Me

The Joy of STRIPES by Paula C. Durbin-Westby on her blog paulacdurbinwestbyautisticblog.  and The Big (and Ableist) Difference between Self-Diagnosed and "Professionally" Diagnosed Autistics

To You, Young Autistic Friend by Amy Sequenzia Trigger Warning for the possibility of ableist comments

Jane Strauss writes Autistics Speaking Day on Facebook Trigger Warning for brief mentions of abuse

Autistics Speaking Day 2012 by Sparrow Jones on Unstrange Mind: Remapping My World

E (The Third Glance) writes Autistics Speaking Day 2012: There's a Flap for That on The Third Glance


Kassiane writes Autistics Speaking Day: This is Why We Need It (lessons learned from talking to Orycon) on Radical Neurodivergence Speaking

Catsidhe writes Independence through reliance upon others on LiveJournal

Leeanne Marshall writes Autistics Speaking Day: On Communication... on OneAutisticPerson tumblr

Lydia at Autistic Hoya writes A Troubling Trend at Sci-Fi Cons Trigger Warning: Ableism, brief cissexist and binarist quote, and descriptions of ableist encounters. 

Cynthia writes This Is My Normal on Musings of an Aspie

Malcolm Mayfield writes Autistic Speaking Day on tumblr

Autism Is Gray by Lori Berkowitz on LoriB.me

Intolerance is Intolerable, and Ignorance is Not to be Ignored by The Autistic Dude on The Autistic Dude in a Neurotypical World

2012, An Anniversary written by Corina Becker at No Stereotypes Here

Alyssa Zisk wrote Autistics Speaking EVERY Day

Andrew Edward Collins writes The Anxiety of Publishing

Rayn writes Autistics Speaking Day 2012! on AcidRayn.com

@xcoffeezombiex writes Autistics Speaking Day on More Than Disorganised

Matt Friedman writes Tiny Island on Dude, I'm An Aspie.

From Elizabeth J. (Ibby) Grace comes Autistics Speaking Day 2012: My Ode to Dapples on Tiny Grace Notes (AKA Ask an Autistic)

Acknowledging Growth by MainJelly at anabellelistic.com

Lucas Scheelk has written a poem Descendant on tumblr

Autistics Communicating Day written by N M Silber on extemporarysanity

chavisory has written Happiness, for Autistics Speaking Day on Chavisory's Notebook

Liam, or @autistliam on Twitter, has written An Unforgettable Smile

Maple writes Autistics Speaking Day: Autism and Spirituality on her tumblr Faeries-Cupboard 

Mahina has written frequently on from aloha to arizona

Louise Parker has a series of posts called Bad Advice on The Cat's Aunt.

My Doggy Personality and 2012 Walk Now For Autism Speaks (Atlanta, GA) by Timotheus "Pharaoh" Gordon on Pharaoh's Principles (via Abilities to the Arts)


Speak Your Mind by Smuggy Bunny on Autistic And Awesome

Autistics Speaking Day 2012: Reclaiming Voice by Ari Ne'eman, ASAN

First Contact by Jessica Banks (@ProfBanks on Twitter) on her blog Jessica Banks schools you.


Ru has written Accepting Herself on tumblr

Standing by Duckie

I am Autistic and I am Tired by Steve Summers on Facebook

Adkyriolexy writes Changing The Odds on Kyriolexy

Autistics Speaking Day, 2012 by Nightengale on Nightengale of Samarkand LiveJournal

Bridget Allen writes No Safe Spaces on It's Bridget's Word   Trigger warning for mentions of hate speech.

Happily Clueless writes Why I can't speak as Autistic, yet on Happily Clueless

When Other People Don’t Get It by Danni Brennand on Dannilion.com

Jo’s Autistics Speaking Day Post on tumblr Trigger warning for mentions of suicide

Peter Seebach, aka Seebs, writes Autistics Speaking Day: Predictably relatively quiet on seebs.net 

R. Larkin Taylor-Parker posts Autistic Speaking on tumblr 

Bard writes Nerds in the Bedroom on Prism*Song NSFW Trigger Warning for Adult Content, discussion of sex and sexuality

Alexander Cheezem writes On Autistics Speaking Day on A View From The Boundaries

Mental Tides by Laura/Light It Up Boo on Facebook


Meditations on Behavior Policing by Michael Scott Monje Jr. on Shaping Clay Trigger warning for isolation-related PTSD

My Video Blog for Autistics Speaking Day by Rainbow on Youtube.

Katharine E Annear writes Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking on AUTAP.COM

Kai writes Upon Tomorrow on The Next Ten Words

Lady Ashmire writes Late ASDay post ( or untitled)


Squiditty writes Stories Seldom Seen Trigger warning for ableism, ableist murder, discussion of victims lives


Nickolas D writes My History on Self- Determine and Independent through Autism


J. Gray writes Autistics Speaking Day this year




Allistic Contributors

Autismum has posted Autistics Speaking Day 2012 on Autismum

Kelly at OneQuarterMama has submitted her piece Different is Not Wrong


Media Coverage

Sharon daVanport at the Autism Women's Network has written Autistics Speaking Day 2012: Two Years Since it all Began

Volunteers
Alyssa Zisk
Seebs
Kathryn
Corina

Autistics Speaking Day this year

J. Gray writes Autistics Speaking Day this year

This year for me is very different from Autistics Speaking Day last year.
On the last autistic speaking day I lived about 1,000 miles north from where I do now. I lived with my parents and a sister in a townhouse in a middle-class neighborhood. I had some autistic friends from a local autism group and I didn't have a lot of adult responsibilities to think about then. This year I live in a trailer community, I use the bus for most of my transportation, and live with one other person who is also autistic.

Things have changed over the year though. I attended autreat twice but since then I've missed two autreats and it's unlikely I'll attend any soon do to finance issues. I don't see most of my autistic friends in person anymore, but I have more than ever before online now. Last year I didn't expect much of any of my relationships, and this year I can say I've been happily living with my autistic fiance for over six months.

I've also come to realize though that sometimes being an autistic adult sometimes means it's very difficult or nearly impossible to get married. I live with an autistic man who receives disability. We have no certainty when or if we can ever get married and still afford to pay bills. Even though I get upset by thoughts about being unable to get married, how will I pay for college, or wondering what sort of job would be appropriate for my skills or ability these things are less upsetting than they used to be.

I'm less alone than I used to be on these problems. I've found both autistic and NT friends online with similar issues. I've expanded a lot on including the entire disability community in finding people with common interest as myself. Things are somewhat easier to handle when other people are around to add affirmation to my feelings. My neighbor is not autistic but has some mental health disabilities and the other day out of some unrelated topic just says "I don't think it's right that some people on disability should have restrictions on getting married (okay- these weren't her words, but that's what she meant)". I wish that things like SS restrictions, bullying and abuse in schools and workplaces, exclusion of autistic individuals , etc. didn't exist and I didn't have any message to tell. For now though things like other people's acknowledge and understanding seem like progress compared to the days I was and elementary school or middle school and had people calling me "psycho".

My History

Nickolas D writes My History on Self- Determine and Independent through Autism

 I am Nickolas Duncan, and I have Asperger's Autism. I was born in January during the early 1990's. I currently work at Earth Fare where I am a courtesy for four years, and I had so much fun working with the best co-workers, and meeting new people. Since then, they were cutting my hours due to economic times and I can't work more hours because of it, so that's why I've been job hunting for 15 months with no success. The interviews I had with other grocery stores wasn't accepted, and the job referral didn't work either. The workplaces I applied to, had no experience working with autistic people.

My story began when I turned two years old; at that time when my parents took me to the doctor, and he said I was diagnose with autism. I always have problems communicating with other people and friends while it was very difficult to learn how to read and combine numbers, but I also had anger issues. I always didn't know what proper behavior was until I got older; it was full of bad choices that took awhile to overcome. During that time, I attended three different elementary schools such as Hunter, Foust, and Pilot. Hunter Elementary was a little OK, but when it was nap time I wasn't used to sleeping at all; however I did learn a little bit along with my former classmates, then we had free time; the same thing with Foust Elementary.

When I attended Pilot Elementary School, this was my most challenging school to cooperate with my new classmates, and my childhood friends from my previous school. We mostly got along really well on certain days, however, there always was a difficult time with behaving very well. Next, when I got to the fifth grade I was finally able to learn on my own behavior and make outstanding grades. The fun thing about this school is participating in Special Olympics like Running and Bowling, where I won many ribbons in first, second, and third place where we compete against other autistic children. 

Continuing the story, I attended Allen Middle School my entire sixth grade year, it was full of bad memories where there was no respect in the classrooms I go to except my homeroom and one encore class. Even though I got many outstanding awards during this school year and making new friends, I was still treated so badly by my mean teachers ( not the best learning environment) despite my hard work. I was very glad to leave that school to transfer to Kernodle Middle School where I reunited with my childhood friend and had the best teachers and friends in the world. That's where I become the one of the most popular students in this school which is my most favorite place to go to because it was one of the honor schools of excellence. We also participated in Special Olympics where this time I won medals.

I'm not going much about high school ( I graduated with honors and as a member of National Honor Society), but more about college I attend called Guilford Technical Community College majoring in Computer Information Systems. I've been attending this school for four years where I enjoyed an incredible learning environment where I reunited with most of my childhood friends, and I even met new friends who continue to support me even if have sad moments in my life, so I want to thank them for always encouraging me to reach my goals. 

I also like to thank my parents who have been with me all my life supporting me and helping me accomplish things, I love them with all my heart, and including my family members, my cousins, and my grandma who is a special woman in my life (if she was still here, she would be proud of me) and I will always miss her.

We all need to help raise autism awareness, and let the entire community know that all of us including our allies are helping fight for our rights to have be treated equally as everyone else. 

Stories Seldom Seen

Squiditty writes Stories Seldom Seen

Trigger warning for ableism, ableist murder, discussion of victims lives

I’ve written here once before about the memorial cairn I tend in my backyard, about the small (and yet too large) huddle of stones that mark the lives and deaths of fellow disabled people who have been murdered.   I’m writing once again because it’s the beginning of November, when I hold my yearly vigil, and because it’s the time of Autistics Speaking Day. 

Not all of the stones I had to add this year were for autistic people, though many of them were.  There’s a lot of overlap in the issues faced by the autistic community and those facing the disabled community as a whole, and that’s tended to be particularly true here.  For the past five years I’ve marked the night quietly and alone- but tonight, I’m here to speak  their names for anyone who will listen.

Read More Here

Late ASDay post ( or untitled)

Lady Ashmire writes Late ASDay post ( or untitled)



I've wanted for awhile to participate in Autistics Speaking Day, but have not been able to since it falls around holiday time, which tends to mean that executive function and language access difficulties are through the roof for me( not helpful that my keyboard is currently messed up pretty badly). As it is, this post will be late, comprised at least partly of disjointed jottings from other occasions, and made possible only by indulgence in a venti latte, which I do rarely for fear of building up a tolerance to caffeine and losing access to its extremely helpful benefits.


Fragment I:

Discussions overheard lately, being near Halloween, have now got me questioning to what extent my experience of fear is similar to that of NTs, and from there also wondering whether it's really me that has the problem understanding the nature of emotions after all. First of all, many NTs claim to enjoy experiencing fear. This makes no sense to me. I think this may, however, be partly due to the fact that, as far as I can tell, they experience when visiting a spook alley or watching a horror film something like my normal baseline levels( BTW, I don't find most of that stuff scary anyway, just physically repulsive---this applies to "If I did get scared, however"). They also seem to think handholding and cuddles are both comforting and a benefit to this type of experience. At the point when I would consider myself to be frightened worth mentioning, I'm in full-on fight-or-flight mode, and any zookeeper will tell you, a primate( humans included!) in such a state isn't something good or that you want to try holding hands with! Fear, from an autistic perspective, isn't something you F___ around with for entertainment, but a true force of nature in itself. We always assume that Dr. Banner's transformation to Hulk( which BTW, I see as a pretty good fictionalized representation of an Aspie having a meltdown) is fueled by anger, yet anger without fear to drive it invariably fizzles rapidly. In fact, I do not see how it is possible to experience the two independently. In spite of this, I've frequently had NTs claim I'm lying about my reactions because they "See anger, not fear" in my expression. There is no anger without fear, no fear without anger! Fight-or-flight is ONE thing, not two! Even love, that supposed conqueror of all, is basically only an extension of fear, the expansion or dislocation of one's survival instincts onto to another individual. 

Fragment II( taken from a comment I made on another blog a year or two ago---the first sentence may sound a little odd without the context but I'm no longer able to find that): 

My opinion is that echolalia really refers to two different if related phenomena. I DO have times when I get a word stuck in a mechanical loop without meaning( sometimes repeating a single word in the middle of a sentence several times, which sounds odd). I do this mainly when fatigued or in pain. But the other kind( used on purpose to communicate) described happens, too, and I think also gets confused with the phenomenon of scripting. 

Scripting is *definitely* intentional communication( well, some of it might be fun play from some children), at least from me and I suspect from many others. There is an old Star Trek: TNG episode where they meet a race that cannot be understood even with their Universal Translator, because these particular aliens speak almost entirely in literary allusions---to literature that humans have never had the opportunity to read. This is almost exactly what I did as a child and even into my early 20s, though because by the time I was in my teens I was using Poe, Shelley, and Shakespeare I just got the reputation of being a dramatic goth kid instead of the real truth, that I couldn't find my own words quickly enough (if ever) so I just used the approximately synonymous phrases of others. (I seem to recall a very early Gary Numan interview where he seems to describe this as actually a part of his creative process, but no NT I've heard that read this was able to understand what he was talking about).

Where it bogs down is if one person gets a totally different message from the text, also I believe some small/more classically autistic kids may associate unrelated emotions to the words due to outside happenings at the time of listening to them, e.g. they quote a movie that they were watching when they last felt the particular emotion they are trying to describe, but that bit of dialogue has no relation to what was happening to them at the time.


Fragment III( from a forum post I made):

I would never have met any of my real-world friends and would have been completely isolated as a teen without online socialization. Being around people physically does not lead to meaningful interaction for me. It's not shyness( though sometimes I can feel shyness if I particularly admire someone or need their approval for external reasons), as I don't really fear rejection or think about it much. I just...can't process in that way. For many years I thought I got hangovers from alcohol or from tobacco allergy or was staying up too late. By process of elimination, however, (i.e., it happens even if I don't drink, no one is smoking and I still get normal sleep time, but does not happen if I drink alcohol by myself or stay up till the wee hours absorbed in a special interest) I discovered that, actually, being forced to socialize in person, especially in a group or without other purpose than socialization itself, directly causes physical pain and exhaustion( symptoms almost identical to what is described for alcoholic hangover) and lowered functioning/increased autistic issues( such as mutism and intensified sensory issues) for the next 1-3 days. Sometimes I do want to see my friends or at least support something they are doing, but it requires a LOT of planning and acceptance of downtime.


Fragment IV: 
I don't think I could ever describe to any NT the soothing rush of sensory happyOMGYAY!! I felt at the sight of this display in the store today:

Edited to add: No idea why the link does not work, but the pic is here:http://www.freeimagehosting.net/sad2l 
I know nothing about this line of toys, but I wish it had been around when I was a kid because I would have gone nuts collecting these! Blue and gray and SOFT! My newborn pics have me in blue instead of the expected pink, not because my parents wanted to buck tradition, but because it was immediately obvious from birth even without ever having heard of sensory aversions that I would cry and freak out self-destructively if wrapped in a pink blanket, yet was as calmed and fascinated by blue things as I was distraught by pink. I did get somewhat desensitized over the years (won't get far in life if you can't stand the sight of your own skin), but still often have to leave an area of a store with Valentine or Breast Cancer displays due to overload---it feels almost like the achiness of oncoming fever, and still feel so, so blissful with pronounced amounts of cool blue tones around me!

Upon Tomorrow

Kai writes Upon Tomorrow on The Next Ten Words

I am a triad of impairments.

My early years were happy ones as there was so much joy to be found and experienced in the quiet of life. Moments were captured and as the film developed, I learnt to interpret the world through my senses. I could happily spend hours absorbing the frames of life, searching out patterns and being sure to feel every detail. Ever longing for information, I would seek out more and more until I exceeded an ever changing threshold and would end up sobbing and exhausted in my mother’s arms.

What a marvelous life. How lucky are we who get to experience this?

But I was not considered to be the lucky one. I didn’t understand that others were not sharing the same experience as me. It seemed silly to say out loud the things which I found so obvious. Why look someone in the eye when there were many more things to look at which resulted in me feeling considerably less ill?

I did not think to join in the games of others. As I grew older, I have vague memories of being herded towards different groups of children and told to “play” with them, that they were my “friends.” If only the memories of the merciless teasing or being drawn into talking about my interests only to be mocked about them later were the vague ones.

It’s lucky that I was smart. I soon learnt that I could make alienation happen on my terms. Life becomes much more calmer when you can control the hate that is directed at you.

High school revealed that I was more than just introverted. I had a brain that would latch on to an interest and treasure it to an extent that I still do not have the words to describe. In fact sometimes there are no words to describe a concept and only a flap of the hands will suffice. The rule based dance that sent words back and forth between people alluded me. I found the conversation of others to be a thing of wonder.

I now realised that I was not as they.

Later I would read that there were words for people who demonstrated traits such as mine.

I displayed a qualitative impairment in social interaction.

I displayed a qualitative impairment in communication.

I displayed restricted, repetitive and stereotyped patterns of behaviour, interests and activities.

I was Autistic. I am Autistic.

This is okay.

It is true that I often have to try significantly harder to complete tasks or engage in activities that others can do subconsciously.  There are some opportunities that will not be open to me.  This does not mean that I am less likely to be happy than those who fall within the norm.

Knowing that there were people on my side helped greatly. Understanding and accepting family, friends and professionals can make a world of difference to those on the spectrum who at times can feel so alone. I now strive to be that someone.

The word that encompasses the triad of impairments fits me well.

I am not ashamed to be Autistic.

I am not ashamed to be me.

Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking

Katharine E Annear writes Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking on AUTAP.COM


Introduction
This paper will explore two issues in disability that of cure and that of acceptance. Particular attention will be paid to the area of Neurodiversity, that is the idea that people diagnosed with autism and related conditions form a neurodiverse population that forms part of the human spectrum of diversity.

The idea of a cure for permanent impairing conditions has been a principal focus of medicine for centuries and for decades many public resources have been injected into finding cures for specific conditions. Shakespeare (2006) proposes that the representation of people with impairment as ‘needing a cure’ is a powerful mechanism for attracting funding to charities and from government. On the other hand some groups of people with impairments (mostly excluding those with life-threatening and degenerative conditions) are willing to forego the idea of a cure in favour of personal and public acceptance of their difference and diversity (Baker, 2011; Shakespeare, 2006). One such group is the Neurodiverse – encapsulating people with autism.

Autism is a condition that is neurobiological in origin and manifests itself in a spectrum of disorders as described by modern psychiatry. These disorders include autistic disorder, Asperger disorder and Pervasive Developmental Disorder Not Otherwise Specified (APA, 1994). Each of these disorders is characterised to an extent by communication difficulties, social deficits, and restricted and repetitive behaviours. There are a number of documented treatments for autism including behavioural therapies, psychological therapies, pharmacological therapies and biomedical therapies, all with varying degrees of success and validity (Herbert, Sharp, Gaudiano, 2002). It must be noted that there is at present no scientifically validated cure for autism (Autism Science Foundation, 2012).
Neurodiversity and Acceptance

The Neurodiversity Movement provides a challenge to modern conceptualisations of autism and puts forward the idea that autism is naturally occurring, not a disease, and should not be the subject of medicalisation and subsequent treatment or cure (Ortega, 2009; McGann & Hutson, 2011). The Neurodiversity Movement relies on strategic essentialism (Garland-Thomson, 1997) in the formation of a minority group with a particular set of characteristics. To this end the Autistic Self Advocacy Network (ASAN) (2012), the largest proponent and organizer of the Neurodiversity Movement, refers to Autistic Community and Autistic Identity as signifiers of this minority group. Bagatell (2010) observes that the discourse of this autistic community provides an interpretation of what it is to be autistic that is in direct contrast to the descriptions in the biomedical paradigm. Her research suggests that people within the neurodiversity movement want many behavioural aspects of autism to be accepted as difference and that autism be treated as a fundamental part of who they are, feeling that without autism they would not be the same person.

Baker (2011) highlights a continuum of understandings of disability from essentialist through to constructivist, the former locating disability within the person and the latter locating disability in the social and political infrastructures surrounding the person with impairment. This continuum of understanding disability has some correlations with the understanding of the perspectives along the continuum between cure and acceptance, however, facets of essentialism and constructivism cut across this continuum. As highlighted previously The Neurodiversity Movement relies on strategic essentialism but it also draws heavily on constructivism, placing the disability associated with autism within the realms of social construction, and arguing that much of the disability could be ameliorated if society were to accommodate and accept neurodiverse individuals, making difference relative. (Garland-Thomson, 1997; Bound, 2008; Baker, 2011). Baker (2011) argues that those engaged in neurodiversty activism consciously employ the theories, language and tactics of previous proponents of diversity in the twentieth century. The wider disability rights movement, the gay rights movement, black power and feminism have all influenced neurodiversity activism.

Within the Neurodiversity Movement there is a specific focus on acceptance of diversity and celebration of difference (Baker, 2011; Robertson, 2010). ASAN (2012) argue that:
“Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society, thus allowing all people to live up to their potential.” (n.p.)

Estee Klar, (parent of a child with autism), founded The Autism Acceptance Project, which has generated such projects as Autism Acceptance Day, Autism Acceptance Month and Autistic Pride Day. Klar delivered a series of lectures entitled The Joy of Autism: Redefining Ability And Quality of Life, which have been acknowledged both by ASAN and the United Nations as being definitive of autism acceptance (ASAN, 2012). Through her blog Klar (2012) explores the challenges of raising a son in the face of society’s ableism, believing that teaching the world to accept her son’s autism will increase his quality of life.

At an international level The United Nations, through World Autism Awareness Day, promotes acceptance of people with autism and their families through upholding their rights. According to the secretary general of the United Nations (2012) World Autism Awareness Day “should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face”….. and…. “people with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

This came after submissions to the United Nations such as the one from Nelson (2004):
“We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured. (Nelson 2004, cited in Davidson, 2008: pp799)
Critics of the Neurodiversity Movement say that this approach does not accept that some people may desire a cure for themselves or their children who are affected by neurological conditions. Initiatives, such as Defeat Autism Now, have sprung up around the notion of cure and recovering children from autism (Rocque, 2010).

The Cure
Contextualised by the essentialist medical model of disability the reflexive desire for a cure is often the first line of response for those confronting a diagnosis of autism (Baker, 2011). This is hardly surprising as within western society there is a message, both overt and covert, that anything outside of normal is unacceptable and normalcy is habitually expected. (Posavad, 2009; Baker, 2011) From Posavad’s (2009) study of the lived experience of mothers of children with autism highlights the feelings of parents:
“Loss of control seems obvious out of sadness for what her child is and might never become. Pressure to ‘help’ her child creates feelings of frustration and disappointment”(pp. 52)

In the context of the stress of parenting a child with autism many families seek or at least hope for a cure for autism. Many parents see their child’s autism as something that masks the real child and prevents them from living a productive life, furthermore, causing the children emotional and physical suffering (Bagatell, 2010)

In America, the National Alliance for Autism Research (NAAR), founded in 1994, and the Cure Autism Now Foundation (CAN) were the comtemporary forerunners in the search for a cure in America and have since merged into the organization Autism Speaks (Ortega, 2009). Autism Speaks, heavily situated within the medical model of disability, has clinical programs such as the Autism Treatment Network, The Autism Genetic Resource Exchange, The Autism Tissue Program and a clinical trials network. In Australia the Mindd Foundation has been set up in order to offer treatments that recover children from autism (Mindd, 2012) and with the proliferation of information via the internet many organizations such as Autism Speaks have global reach into Australia.

These more modern organizations follow in the wake of predecessors such as Bruno Bettelheim (1967) who in the 1960’s claimed to have found the cause of autism; cold and detached mothers who caused a defensive reaction in their children. Bettelheim claimed that the cure for these children was a ‘parentectomy’ – extended periods of time without their parents, he also claimed an 85 percent cure rate at his school (Herbert, Sharp, Gaudiano, 2002). Bettelheim was later found to be a ‘self styled’ child specialist with no formal training in psychoanalysis, his theories were subsequently discredited (Grinker, 2007).

According to Shakespeare (2006) from a critical realist perspective we cannot discount the role of biomedical and psychological intervention for people with disabilities. Shakespeare highlights autism as a ‘difficult case’ as within the spectrum of autism there is a hierarchy of impairment from quite functional, yet different, people to people with significant intellectual and speech and language impairments. Shakespeare feels that the goal of promoting acceptance should not distract from mitigating the effects of impairment. However he comments that denigrating or misrepresenting the lives of people with disabilities, in the search for cures, cannot be justified.

The Tensions
Scientific research agendas, fuelled by the hopes of parents for a cure, have propelled autism into the media spotlight. Celebrities have flocked to campaigns to find a cure for autism with Oprah Winfrey hosting television programs, ex model and actress Jenny McCarthy, parent of a child with autism, and her then partner Jim Carey walking for a cure.

These celebrities begin to blur the lines between science and subjectivity, particularly McCarthy who claims her son has been cured of autism, and has written two books on healing autism and has founded an organisation named ‘Generation Rescue’. McCarthy relies on anecdotal evidence to support her work claiming her son is her science (Belkin, 2010). McCarthy (cited in Roque, 2010) fuels the negative emotions associated with autism to mobilize support for a cure:
“Autism, as I see it, steals the soul from a child; then, if allowed, it relentlessly sucks life’s marrow out of the family members, one by one” (n.p.)

Actor Lou Diamond Phillips also led a parade of children, ‘recovered’ from autism, during an opening event for an autism treatment organisation. Citing the work of Garland-Thomson, Roque (2010) argues that this is an example of the ‘freak discourse’ of the 19th century alive and well today. The parade, he argues, is an example of the reversal of the freak, a parade of reclaimed or recovered normalcy aimed at enticing the audience to purchase the treatment products.

In Australia the organisation Autism Awareness (2008) ran a community service announcement that claims that autism is “stealing the minds and personalities of the generation of Australian children” and further claims “30,000 Aussie kids have been kidnapped by autism”. This community service announcement is recorded by a number of prominent Australian actors and TV personalities.

A case that further demonstrates misrepresentation and the tension between those seeking a cure, and those seeking acceptance, is that of the “Ransom Notes”. Kras (2010) and Bagatell (2010) outline the case in which the New York University’s Child Studies Centre placed ‘medical advertisements’ highlighting the psychiatric disorders they treat. The advertisment for autism read as follows:
Autism
We have your son.
We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.
This is only the beginning.

ASAN organised a grass-roots internet protest including an online petition and letter writing initiative against this campaign. Due to overwhelming pressure and objection from the autism and disability communities, on the grounds that the campaign further stigmatized people with disabilities, the ads were pulled by the agency. In his critique of the Ransom notes campaign Kras (2010) says the following:
“These ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents’ — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. (n.p.)

Here the medical model of disability is confronted with the social constructivist model of disability with the activists using the latter to claim that the attitudes promoted in the ads further disable the individual diagnosed with the condition.

It is interesting to note that people may move along the continuum of attitudes toward cure and acceptance, dependent on their individual circumstances, environmental factors, and the social and political climate. Many parents like Estee Klar stand for the acceptance of their children, but started their journeys with autism, by looking for treatments and possible cures, and to this day use the treatments they have found effective. Even among people with autism themselves there are a variety of attitudes toward cure. Sue Rubin, a woman with autism, (cited in Ortega, 2009) says she belongs to the ‘cure group’, and thinks a cure for autism would be wonderful. Reflecting another point on the continuum, John Elder Robison (2009), a man also on the autism spectrum, believes that a cure should not be a focus but rather there should be a focus on treating the parts of autism that cause the most distress. And Ari Ne’eman from ASAN (2012) states ‘for many of us, the prospect of cure and normalization denies essential aspects of our identity.” (n.p.) This may seem as though he is rejecting any treatment or intervention, but that is far from the case, as he promotes the use of supports that enable the individual with autism to function more effectively in the world, without the need to remove their autism (ASAN, 2012).
Baker (2011) asserts that for society to respond effectively to these issues, through policy innovation, it must embrace multiple understandings of disability including responses to the problem such as cure and acceptance, and despite the obvious tension between the responses, there is value in discontent, as without such interest from passionate proponents issues fall away from public and systemic agendas.


Conclusion
Neurodiversity is a newer concept within disability studies and provides a counterpoint to the medical model of disability. Neurodiversity uses both strategic essentialism and social constructivism to argue for the acceptance of people with autism. Many people with autism have their condition framed by the medical model, which asserts that, the desirable state of being is ‘normal’ functioning of the physical and psychological body, and that a return to this state, via treatment and ultimately cure, is desirable. There are many tensions between these two agendas that have been played out publically with families, organisations and celebrities promoting the elusive cure, and neurodiversty activists promoting acceptance, on the grounds that difference from the norm is a part of the human spectrum. Attitudes toward cure and acceptance are not fixed and cannot be ascribed as belonging to one group or another. What we can do is aim to understand how strong public discourse on these matters fuels policy agendas.
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http://www.youtube.com/watch?feature=player_embedded&v=_7IFs3cIRak Accessed 7/6/12
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http://autisticadvocacy.org/2012/03/autism-acceptance-events-and-their-history/ Accessed 7/6/12
Autistic Self Advocacy Network. (2012). Position statements.
http://autisticadvocacy.org/policy-advocacy/position-statements Accessed 7/6/12
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My Video Blog for Autistics Speaking Day

My Video Blog for Autistics Speaking Day by Rainbow on Youtube.

Meditations on Behavior Policing

Meditations on Behavior Policing by Michael Scott Monje Jr. on Shaping Clay

Trigger warning for isolation-related PTSD


Growing up, I might not have had an autism diagnosis, but that does not mean that my parents were oblivious to the differences between my behavior and typical behavior. Sure, when I was very young, they made their mistakes. For instance, my mother thought that the fact that I would sit for hours, focused on my own thoughts, made me an "easy" child. In some ways it did, because that meant that she could leave me unattended and run downstairs to change the laundry without worrying that I'd wander off. To a nineteen year old with a toddler, I'm sure that that had to seem like a blessing at times.

Similarly, when I was two or three and I started to get obsessed with organizing and arranging things, that made my parents' lives easier. After all, a child that can be kept busy sorting a pile of sticks from longest to shortest, then from thickest to thinnest, then from darkest to lightest is not a child who is likely to notice if you can't afford to get him a new toy every time he wants one. He's not as demanding.

Read more of this post here. 

Mental Tides

Mental Tides by Laura/Light It Up Boo on Facebook

Today is Autistics Speaking Day. 

One thing that just came to my mind was that the autistic mind is like an ocean, in that we have high and low tides. This does not mean "functioning level". It means sometimes it takes a lot more effort for me to do something like remember to eat or bathe. Sometimes it's easier to do these things, and sometimes it's harder. Being autistic means it's never automatic for me to do these things. My energy levels, or tides, change over various lengths of time. It is affected by things like my mood, what activity I am currently doing and how much energy it takes, how my physical body is feeling, who I am interacting with and how, and what my surroundings are. These affect tidal levels in my mental ocean. Sometimes a storm arrives and makes it harder for the tides to stay where I expect them. This week I had one of those unexpected storms and it has been hard on my executive functioning. I am hoping this storm will clear up soon because I have other tasks that I can't neglect.