Neurodiversity » Guest

Occupy The DSM (Open Letter and Petition to the DSM-5 Task Force and the APA)

Guest — Tue, 25 Oct 2011 05:07:50 +0000

To the DSM-5 Task Force and the American Psychiatric Association:

As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.

For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.

Overview

Though we admire various efforts of the DSM-5 Task Force, especially efforts to update the manual according to new empirical research, we have substantial reservations about a number of the proposed changes that are presented on www.dsm5.org. As we will detail below, we are concerned about the lowering of diagnostic thresholds for multiple disorder categories, about the introduction of disorders that may lead to inappropriate medical treatment of vulnerable populations, and about specific proposals that appear to lack empirical grounding. In addition, we question proposed changes to the definition(s) of mental disorder that deemphasize sociocultural variation while placing more emphasis on biological theory. In light of the growing empirical evidence that neurobiology does not fully account for the emergence of mental distress, as well as new longitudinal studies revealing long-term hazards of standard neurobiological (psychotropic) treatment, we believe that these changes pose substantial risks to patients/clients, practitioners, and the mental health professions in general.

Given the changes currently taking place in the profession and science of psychiatry, as well as the developing empirical landscape from which psychiatric knowledge is drawn, we believe that it is important to make our opinions known at this particular historical moment. As stated at the conclusion of this letter, we believe that it is time for psychiatry and psychology collaboratively to explore the possibility of developing an alternative approach to the conceptualization of emotional distress. We believe that the risks posed by DSM-5, as outlined below, only highlight the need for a descriptive and empirical approach that is unencumbered by previous deductive and theoretical models.

In more detail, our response to DSM-5 is as follows [these are headings only; for full details and references see original version linked below]:

Advances Made by the DSM-5 Task Force

Lowering of Diagnostic Thresholds

Vulnerable Populations

Sociocultural Variation

Revisions to Existing Disorder Groupings

New Emphasis on Medico-Physiological Theory

Conclusions

In sum, we have serious reservations about the proposed content of the future DSM-5, as we believe that the new proposals pose the risk of exacerbating longstanding problems with the current system. Many of our reservations, including some of the problems described above, have already been articulated in the formal response to DSM-5 issued by the British Psychological Society (BPS, 2011) and in the email communication of the American Counseling Association (ACA) to Allen Frances (Frances, 2011b).

In light of the above-listed reservations concerning DSM-5’s proposed changes, we hereby voice agreement with BPS that:

• “…clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”

• “The putative diagnoses presented in DSM-V are clearly based largely on social norms, with ‘symptoms’ that all rely on subjective judgments, with little confirmatory physical ‘signs’ or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations.”

• “… [taxonomic] systems such as this are based on identifying problems as located within individuals. This misses the relational context of problems and the undeniable social causation of many such problems.”

• There is a need for “a revision of the way mental distress is thought about, starting with recognition of the overwhelming evidence that it is on a spectrum with ‘normal’ experience” and the fact that strongly evidenced causal factors include “psychosocial factors such as poverty, unemployment and trauma.”

• An ideal empirical system for classification would not be based on past theory but rather would “ begin from the bottom up – starting with specific experiences, problems or ‘symptoms’ or ‘complaints’.”

The present DSM-5 development period may provide a unique opportunity to address these dilemmas, especially given the Task Force’s willingness to reconceptualize the general architecture of psychiatric taxonomy. However, we believe that the proposals presented on www.dsm5.org are more likely to exacerbate rather than mitigate these longstanding problems. We share BPS’s hopes for a more inductive, descriptive approach in the future, and we join BPS in offering participation and guidance in the revision process.

***

The above appears in expanded form here, where there is a link to sign the petition in support, and where sponsors are listed as follows:

Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with Society for Community Research and Action: Division of Community Psychology (Division 27 of APA), Society for Group Psychology and Psychotherapy (Division 49 of APA), and The Association for Women in Psychology. We invite mental health professionals and mental health organizations to sign on in support of this petition to the DSM5 Task Force of the American Psychiatric Association.

[image via Flickr/Creative Commons]

Book Review: “Blazing My Trail: Living and Thriving with Autism” by Rachel B. Cohen-Rottenberg

Guest — Sat, 08 Oct 2011 04:59:36 +0000

“Blazing My Trail: Living and Thriving with Autism” by Rachel B. Cohen-Rottenberg is a “sequel” to “The Uncharted Path” which I reviewed here and followed up here.

When we last left Rachel’s story, she had fully accepted her place on the autism spectrum and was making plans to take control of parts of her life. The plans weren’t big plans but every long journey begins with small steps.

At times, it feels like an entirely different person has written this book. This Rachel is capable, confident, assertive (without being nearly so argumentive) and full of promise.

Yes, it is a sequel and indeed in the first chapter or two, it feels like you need to have read the first book – but then it all changes and from then on, whenever it references past events, it provides a handy recap.

I feel that the titles of the books were very well chosen, with “The Uncharted Path” being about taking uncertain steps into unknown territory and Blazing My Trail being about running with full confidence along that path and leaving a trail for others to follow.

I get the feeling that Rachel’s experience with medications had a lot to do with this positive turn of events and she spends a bit of time talking about their effect. Unlike many people, I’m not a “hater” of medications. I’ve seen them doing good under the right conditions. Rachel’s medications however are a good reminder that regardless of how many second opinions you get, not all drugs are suitable and all must be strictly monitored with specific measurable goals in place. Some types of drugs shouldn’t be taken except in the most crucial of situations.

The book provides a lot of practical and ready-to-use advice and insight for adults on the spectrum (and parents of children on the spectrum). In particular, Rachel talks about ways to overcome the sound and spatial sensitivities which are obviously the issues which give her the most trouble. Rachel also covers everyday events such as standing up for your rights as an individual – something that I, and many shy(?) aspies have a great deal of trouble with.

The second half of the book is more of a discussion of “bug bears”. Rachel’s feelings about the social constructs around the autism community and their perception by the wider community in general.

A lot has changed. The “old” Rachel would have written this aggressively like a lone revolutionary out on a crusade but this “new” Rachel is quietly persuasive, tolerant and altogether more worldly. She is not afraid to change her opinions or to challenge the deep seated beliefs of the wider autism community. The result is some pretty engrossing reading.

I also noticed that Rachel uses the word Aspergers more often than Autism in this book. This was strange because it felt like the word “Aspergers” had been purged from her last volume in favor of Autism. I’m sure there’s an interesting story behind the turnaround but sadly it’s not covered in the book, though there seem to be some tantalizing hints.

Rachel raises some absolutely brilliant concepts and covers various subjects including abelism. the puzzle piece metaphor, the theory of mind, the perception of “autism as a sickness” and label-grief.

I enjoyed this book even more than the Uncharted Path, mainly I think because of the positive outlook. This is a brilliant book by one of the most individual writers in the autism community which will have you pondering the issues it raises long after you’ve put it down.

Blazing My Trail is available on Amazon.

Honesty Clause: I was provided with a copy of this book at no charge for review purposes.

Gavin Bollard blogs at Life with Aspergers.

Book Review: “Blazing My Trail: Living and Thriving with Autism” by Rachel B. Cohen-Rottenberg appears here by permission.

Cats, Dogs, and Asperger’s Syndrome

Guest — Tue, 13 Sep 2011 05:57:58 +0000

Imagine for a moment a person who has grown up in a family where they only ever had pet dogs. Their friends and neighbours had pet dogs – all different breeds, colours and temperaments, but still, fundamentally, dogs. They all went to the dog park together every afternoon and always had a raucously good time. They had never, ever, ever seen a cat. Not once.

Then one day they stumble upon an adorable looking creature that is cute, furry, has a black wet nose, four paws and whiskers and for all intents and purposes, looks exactly like the type of friendly, willing to please dog they had known and loved all their lives. Its tail is waving to and fro in what is perceived to be a welcoming gesture so they go over, ruffle up its soft fur and attempt to roll it over to scratch its belly, anticipating their affectionate gesture will be delightfully received. Only it’s not a dog, it’s a cat, and their interaction is interpreted very differently. Lets just say, fur will fly and it will fly furiously.

Welcome to the world of a child with Asperger’s Syndrome. A solitary cat, surviving in a room full of boisterous dogs. Its every move being analysed, interpreted and modified based on the framework of rules, behavioural patterns and ingrained habits of the canine species. And as a result, being disastrously misunderstood.

Dogs wag their tails as a sign of happiness and anticipation of social interaction. Cats swish their tails as a warning to back off and give them much needed space. Dogs always welcome affection in whatever way it is offered to them. Cats will also offer heartfelt affection but it needs to on their terms, at a time that suits them. Sometimes they just need to be left alone. Dogs depend on your approval for their emotional wellbeing. Cats depend on certain things being in place in a routine that they can depend on, and will then reward your reliability with their unwavering friendship.

Dogs are inherently social. They are pack animals with deeply entrenched hierarchical rules of canine society and as a result are desperately eager to please, and occasionally challenge, the pack leader. As puppies, they will romp and play delightedly with their littermates until they fall into an exhausted, but happy heap on top of each other at the end of the day. They rarely turn down an offer of affection and will warmly greet their family with furry hugs and sloppy kisses when they get home.

On the surface, cats may seem more aloof, but cat lovers around the world will be quick to tell you they are always keenly observing every detail and will reward those who take the time to understand them with warmth, affection, loyalty and love. Dogs are less discriminating in whom they shower with their boundless love, and this is part of their universal appeal, but it is a trait that cats simply don’t understand or tolerate. Their love needs to be earned.

Dogs enthusiastically learn new tricks and are keen to show them off to gain further approval. Cats have extraordinary agility and mysterious extra-sensory skills, but will only display them when the circumstances dictate they are necessary. They need to be coaxed out and encouraged or will remain hidden forever.

Cats may not always look you in the eye, but they can see straight into your soul and will quietly commune with you while you process the problems of your world. Dogs will sense your unhappiness but may not fully understand it, so will entice you to capture some of their perpetual joy by grabbing their lead and making you take them for a walk to cheer you up. Their destination may be the same, but their journey could not be more different.

If you whistle for a cat to come to you, try to wrangle a leash onto its collar, drag it outside for a walk and hope it will thank you for letting it romp around the dog park then you are both doomed to crumple in a heap of confused despair. Simply said, cats are wired differently to dogs. They are not better or worse. Just different.

So if you want to understand my child with Asperger’s Syndrome, try to think of her as a cat in a room full of dogs, and you will be a lot closer to coaxing out her unique gifts, helping her understand social behavior that she may otherwise find bewildering, and maybe in time her gorgeous, eager to please peers will gain a greater appreciation of the grace, beauty and uniqueness that bestows her, just like her feline doppelgänger.

Cats, Dogs, and Asperger’s Syndrome was an anonymous, explicitly shareable contribution to the blog of Gina Gallagher and Patricia Konjoian, authors of Shut Up About Your Perfect Kid! It surfaced recently in the autism section of social news site Reddit.

[image via Flickr/Creative Commons]

A quicky on the internet and ASD; how something rotten led me to something beautiful

Guest — Fri, 05 Aug 2011 14:00:54 +0000

Because the awareness and (arguably accordingly) the numbers of autism, are on the rise, and yet it still remains mysterious and misunderstood, “autism” is an easy term to toss around when you want to sensationalize your latest cause. Whether its cell-phone towers or immunizations, polluted environments or plastic food containers, why not scare everyone by saying it causes autism, then dare them to disprove it when you haven’t provided proof of your claim in the first place. What a fun game for us all to play. Such a popular game. So I shouldn’t have been surprised to see someone claiming – without any research or explanation to back it up – that autism might be caused by the internet too.

It’s an easy claim for me (or you, or anyone with a few brain cells to rub together), to attack. You could try to point out that the rise in autism numbers has a rather vast number of other far-better-documented-and-explained causes. You could point out that newborns and toddlers with autism haven’t had internet access. You could talk about how autism is present in Amish populations too, and that there are many known genetic causes of autism.

No doubt all such claims can be (will be) met with the reply that “ah, but you see, at least some of autism is being caused by the internet…” (That should sound familiar; you’ll hear the same claims about some autism is being caused by cell-phone towers, plastics exposure, etc blah etc.) You still need proof though. Can they show you a single case where someone who clearly did not have autism, came to have autism after the thing in question, and explain scientifically how that change came about (controlling for correlation versus causation for instance).

Anyway, I thought about writing a lengthy post attacking the claim properly – lots of reading lots of opinions and research – and began with your typical Google search. I waded my way through various off-topic and silly pieces, and then came across something very long, but also very beautiful, about the relationship between autism and the internet. It shared some things I was already aware of, such as how the internet can help autistic people express themselves without the challenges and confusions of facial expressions and body language. But it went well beyond that. It made the eye-opening connection between the way we understand the internet, and the way an autistic mind interacts with and makes sense of the world. It explained how the internet can be viewed like Braille for an autistic person. It shared the wonder and acceptance of many autistic people when they can use the internet to finally connect with others like themselves, gaining a sense of community and enhanced sense of self-worth.

It is a wonderful piece of writing. And I wouldn’t have discovered it if I hadn’t been motivated to do a general search with the aim of exploring the (apparently completely unfounded) claim that the internet can cause autism. And so, though I don’t have time to do a properly researched and better written post about autism and the internet, I can at least direct you towards someone who understands and celebrates – rather than attacks – the beautiful relationship between the internet and autism.

***

The something rotten: Susan Greenfield: Living online is changing our brains

The something beautiful: “Autism and the Internet” or “It’s the Wiring, Stupid”, by Harvey Blume.

A quicky on the internet and ASD; how something rotten led me to something beautiful, originally at Autism and Oughtisms, appears here by permission.

[image via Wikimedia Commons]

Reflections on a Changing World

Guest — Mon, 01 Aug 2011 14:00:51 +0000

The neurodiversity movement got its start in the early 1990s, when a few autistic people got together on mailing lists and dared to imagine a day when they would be seen as equals in society. Their conversations were, at that time, largely unknown to the world. The prevailing stereotypes about autism were so extreme that the very existence of autistic people who were capable of having such conversations was generally thought impossible.

It took another decade, and the advent of blogging, before pro-neurodiversity sites burst onto the Internet in large numbers. Some of these sites had modest aims, looking to dispel the worst of the prejudices by simply showing the public that autistics could indeed write coherent articles and have intelligent conversations. Others had more ambitious goals, posting specific, in-depth criticisms of society’s attitudes toward autistics and setting forth a detailed civil rights agenda. Most fell somewhere in the middle.

How much progress has our society made, since then, toward acceptance of its autistic citizens? While many are still without jobs, we’re seeing more efforts to enforce antidiscrimination laws and to include autistic applicants in diversity hiring programs. Although the schools still have a long way to go, they’re slowly learning how to educate our children in respectful and inclusive ways. There’s not nearly as much of the ugly rhetoric that was commonplace just a few years ago. As with other minority groups that have become integrated into mainstream society, just seeing autistic people on a regular basis — both in online venues and in schools, workplaces, and neighborhoods — has brought about more understanding, while showing up ignorant prejudices for what they really are.

Because so many beneficial changes have taken place in recent years, some neurodiversity sites already are outdated. Aspergian Pride, which was created in 2004 to highlight stories about the accomplishments and positive qualities of autistic people, has become an antiquated reminder of a time when many otherwise reasonable folks thought there weren’t any to be found. Accordingly, the blog is now being closed, although the site will stay up for historical purposes. Many thanks to all who have contributed their time, energy, and wisdom to bring us this far.

Reflections on a Changing World was recently posted on the Aspergian Pride blog and appears here by permission.

Autism Research, Prenatal Testing, and “The Autistic Genocide Clock”

Guest — Tue, 19 Jul 2011 05:00:45 +0000

As originally posted, this page was a response to an article published on MSNBC.com on Feb. 23, 2005, in which Dr. Joseph Buxbaum, a prominent research scientist, predicted that genetic research on autism could lead to a prenatal test within 10 years. A countdown timer posted at the top of this page, entitled “The Autistic Genocide Clock,” kept track of the time remaining in the 10-year period after the date of that article. A discussion of eugenics followed.

The world has changed considerably since then. It seems hard to believe now, upon rewriting this article in July 2011, that just six years ago many influential decision-makers seriously advocated eugenic eradication of the entire Autistic population — a minority group estimated to include more than 60 million human beings worldwide. The mainstream media and the public policy discussions about autism became saturated with imagery straight out of medieval changeling myths. Autistic people were commonly described as empty shells, less than human, devoid of empathy, and incapable of contributing to society. Some public charities intentionally promoted these atrocious stereotypes as a strategy to gain more funding for genetic research.

But two things happened that derailed their plans to develop a prenatal test and to put it into routine use. First, the genetic factors involved in autism proved to be more complex than they had anticipated. Second, and more significantly, the public conversation changed. Autistic self-advocates and others who were concerned about its destructive tone launched efforts to shift the focus of the discourse. Policymakers listened, and the conversation moved into the realm of disability rights. The media became more aware of their ethical obligation to present accurate and respectful information about autism. The discourse began to focus on the actual needs of Autistic people — community services and supports; better health care; and equal opportunity in schools, the workplace, and throughout society.

Although the cultural and political landscape has changed in many ways for the better since this page was created, the history of that time period should not be forgotten. It is a sobering reminder of just how quickly, even in a modern democracy such as the United States, media-driven mass hysteria can push any minority group to the brink of genocide. It also stands as a testament to the determined efforts of the many decent people who put large amounts of time and hard work into pushing back. We would be wise to remember the admonition, often attributed to Thomas Jefferson, that “eternal vigilance is the price of liberty.”

This post appeared recently under the title Autism Research and Prenatal Testing at the Ventura33 Neurodiversity Page. An early snapshot of the page (with the clock intact and still running) can be viewed here.

[image: Salvador Dali's The Persistence of Memory]

A Strange Encounter

Guest — Thu, 16 Jun 2011 05:00:32 +0000

A stranger observed the playground. The scene was perfectly normal and just a little bit odd at the same time. It was a bit too quiet for a playground filled with so many children. A nine year old boy walked around the grassy area, away from the jungle gym, his nose buried in a cell phone, uninterested in the play equipment. His four-year-old sister paced across the jungle gym bridge, dragging the toe of her left foot every third step, and stomping quite a bit more than was necessary. Her pounding footsteps and quiet mutterings to herself were the only sound.

An older girl, well, the stranger assumed she was older, as she seemed to possess an inner calm not present in the other children, stood at the bottom of the jungle gym, watching her little sister and occasionally taking a swig from her water bottle. From her position under the play equipment she could clearly hear the younger girl’s mutterings, and she would occasionally smile over at her mother as if the little one had said something particularly cute. The mother was in a swing, a toddler on her lap. No squeals of glee from the baby as the swing went higher and higher, but his little arms flapped up and down occasionally, as if the child was imagining himself a bird about to take flight.

The observing stranger also watched the only other family at the park. A couple sitting on a bench, watching their children play. The stranger noted the tension in their posture. No smiles. They were on full alert, although he couldn’t understand why. Their three children were nowhere near the others. Their oldest little boy, perhaps around age seven or so, was trying to hit a ball off of a tee. His cries of frustration when he missed were soothed by his father’s calming voice. With determination, he would put the ball back on the tee and try again. At their feet sat two younger children. A boy around the age of five, and a girl around three. They were coloring the sidewalk with chalk, and the stranger couldn’t help but notice the intensity of the little boy’s concentration. How he didn’t seem to be aware of anything around him. The stranger might have pondered this intensity, thinking that it seemed strange, but not able to really pinpoint why. He wouldn’t have to wonder for long. In a flash, the little boy emitted a high pitched squeal and ran straight towards the older girl on the playground. Time slowed to a crawl as the parents flew into action, desperately calling the little boy’s name, which he ignored, and running after him, but not in time to stop him from trying to pull the water bottle out of the little girl’s hand.

The stranger thought the parents were incompetent. They didn’t reprimand the little boy. Instead, the mother said, “Time to go!” in a voice that sounded cheerful, if a bit forced. The stranger felt disappointed at the apparent lack of concern for such appalling behavior from a child who was clearly old enough to know better. He felt a trill of anticipation, however, when the mother of the wronged child fairly flew off of the swing and ran towards the departing family–clearly, she intended to instruct the other woman on how to properly instruct her thoughtless child. “WAIT!” she cried, the plea pulled from her almost unwillingly, without premeditated thought.

“Your son…I heard him squeal. Is he…?”
“He’s autistic,” she replied.
“Please don’t leave because of us,” the swing mother said. Inexplicably, her eyes swam with tears. She gestured helplessly to the children on the playground. ”Mine are too.” The stranger watched as the little boy’s mother surveyed the other mother’s little girl and oldest little boy as if seeing them for the first time. He held his breath as her eyes took in the toddler in the mother’s arms, who was staring at a patch of grass off to his mom’s right, completely oblivious to this new woman in front of him. ”I promise, there’s nothing he can do that we would be offended by. It’s really okay!” There was desperation and pleading and reassurance in her voice all at once, as if what mattered most in the world to her was that this mother and child feel welcome and accepted.
“There seems to be more and more of us,” the other mother replied. ”They’ll be okay,” she said, though whether she was talking to herself or the woman in front of her was unclear to the stranger. The two women shared a look that transcended words,and he knew that they were at once strangers and sisters, bound together by a journey that few would understand. Shared experience hung heavily between them for a moment.
“I just don’t want you to think that you have to leave because of us.”
“Oh, no…We’ve been here a while. He must be thirsty.” And with that she walked away. The stranger watched as the remaining mother resolutely refused to look at the other family, the father struggling to buckle the little boy into his carseat. They got enough stares from everyone else.

Tessa Jordan blogs at Apples and Autobots.

A Strange Encounter appears here by permission.

[image via original post]

Normal? No Thanks.

Guest — Tue, 14 Jun 2011 05:00:56 +0000

When we try to push our ASD kids into normal or NT behaviours, what does that mean? After all there’s plenty of NT kids and adults I don’t want my children to act like. Rude, aggressive, selfish, entitled, arrogant and smarmy, Ive met them all in kids as young as 6. Yes to manners, and yes to impulse control, and focus skills, and even shared attention, some non forced eye contact and social awareness. But using ‘normal’ as the benchmark when normal can encapsulate attention seeking or neuroticism or manipulation or extreme extroversion leads me question some of the fundamental aspects of focus in behavioural therapies.

Now don’t get me wrong. I’m not subscribing to the extreme position in the Neurodiversity movement that says therapies for people with Autism are wrong because they do not accept the person as is. Actually I find that to be an appalling approach. I mean NT kids get sent to school to learn the things they will need to one day hopefully gain employment and live independently. Why on earth would I deprive my son of the same opportunites? As I see it, the therapy he is doing now is preparing him for school and life beyond and it would be neglectful of me not to do so.

I also understand the value of children learning to make some eye contact even if minimal, to learn how to interact with others and to learn to manage their stimming behaviours. I know the best chance our kids have of forming a friendship or two is by learning some social graces. I have no problem with any of these life skills being taught. But when the main goal of therapy becomes making my child ‘indistinguishable’, I wonder what type of normal the people who say that have in mind?

I also wonder if the push for normalcy is motivated by a historical legacy of fear of difference. The psychology perspective tends to look at identifying and treating mental illness and it’s also the profession that has gained the most traction within the ASD treatment sphere. While this is understandable since Autism is a behavioural diagnosis, I think it’s time to change some of the pathologising narratives. It’s quite possible to do so, as social work ( a profession I was once part of ) does this well. Acknowledging the challenges that come with any diagnosis yet looking at the individual in context and the multitude of variables that affect outcomes for people rather than seeing the person as a diagnosis to be fixed, full stop.

I don’t care if people can tell my child is different. Deal with it people. I am hoping I can convince him not to care either. I know when he gets older he will have the cognitive awareness to work out he isn’t like the rest of the kids in his class. But what I also want him to know is that all his classmates have their fair share of issues too. There’ll be the kid who is overweight, the boy who cant play sport, the kid that cant keep up with the rest academically, the kid who acts out in class because he lives with violence at home, the kid that is always coming to school late and without lunch. You dont have to have Autism to struggle to make friends, to be picked on, to be different. Essentially we are all a bit strange, just some more than others. And often the more normal the person the more dull in my experience. I want my son to know that not being normal is cool, and he is totally loved and accepted for who he is. This means not expecting ‘normal’ or indistinguishable’ from him. That is an unfair expectation and I wont be party to it.

Sharon Morris blogs at The Tumultuous Truth.

Normal? No Thanks. appears here by permission.

[image via Flickr/Creative Commons]

It Is Never Okay

Guest — Tue, 31 May 2011 06:22:57 +0000

It is never okay to blame the victim for sexual abuse.

Or any other kind of abuse.

It is never okay if the victim-blaming is cloaked in “humor.”

It is never okay if the victim-blaming is cloaked in concern.

It is never okay if the victim-blaming is portrayed as “empowerment.”

It is never okay if the victim-blaming is framed in contrast to another, older form of victim-blaming.

So this? Is never okay.

May she be Beautiful but not Damaged, for it’s the Damage that draws the creepy soccer coach’s eye, not the Beauty.

It doesn’t surprise me that someone would say such a thing. Ignorance and victim-blaming abound whenever child abuse, especially sexual abuse, is discussed. I am, however, slightly appalled at the uncritical praise this essay is receiving all over the internet, with little or no acknowledgement of the deeply offensive nature of this line, which in one sentence summarizes, reinforces, and solidifies the stigma and pain felt by those who have been harmed by childhood sexual abuse, and the fear that can linger in the mind of even the most self-confident survivor: maybe this happened to me because there’s something wrong with me.

This is, after all, how abusers want their victims to feel. It’s how abusers’ defenders want victims to feel. It’s how most members of a rape culture unwilling to honestly face its own corruption want victims to feel. It is, however, a lie.

The writer, Tina Fey, contrasts her form of victim-blaming with the older, traditional, and largely discredited (rightly so) form, in which sexual abuse is thought to be a result of uncontrollable desire brought on by an irresistibly alluring victim. But her view is no less offensive and no less victim-blaming than the one she scorns. Claiming that children attract sexual abuse through their “damage” is no more enlightened, empowering, feminist, or progressive than claiming they attract it through their beauty. The truth is that children do not attract sexual abuse.

In the rest of the essay she lists many common parental fears, most of them exaggerated for comic effect. These other things listed, exaggerated though they may be, are things that actually exist. Damaged people do not. People are flawed, people are vulnerable, people are harmed, but people are never damaged. People never bring abuse upon themselves by their “damage.”

The “Damage” lie is comprised of three core assumptions, all of them lies:

1) Painful, harmful, or traumatic experiences cause the survivors of these experiences to become cognitively impaired and to have poor judgment (and, thus, deserve all of the stigma, restrictions, condescension, and dehumanization given to all other cognitively impaired people).

2) The one and only way to be truly healed from this cognitive impairment (and thus regain the status of a nonimpaired person) is to relive (or “process” or “confront”) the painful/harmful/traumatic experience with a trained psychotherapist (for many people, a traumatic experience in itself).

3) Abuse, particularly sexual abuse, is something victims seek out, consciously or unconsciously, as a result of cognitive impairment.

The truth is that the adverse effects of traumatic experiences, while significant, do not include cognitive impairment. The adverse effects that do exist can be healed naturally, without coercion or “processing,” through support for the mind’s own recovery processes. Abusers exploit vulnerabilities, but vulnerabilities do not cause abuse. Abuse is something done to a victim, by an abuser. It is not something a victim seeks out, either actively or passively. It is never something a victim, particularly a child, attracts or draws to herself.

What does this have to do with autistic advocacy? Well, nothing, except in that autistic children are at a higher risk of sexual abuse than neurotypical children (not because they are “damaged” by autism, but because they have greater vulnerabilities). It does, however, have to do with the mental health industry. The more people can be convinced that they or their children are “damaged,” the more psychiatrists and psychotherapists can be employed in correcting this “damage.” There is no money, after all, in accepting people as they are. Just as the lucrative “cure” and “treatment” industries have a vested financial interest in catastrophizing autism, the mental health industry likewise stand to gain from continuing to blame victims of abuse while selling them the services to “correct” their “damage.”

But people deserve to know the truth. Survivors of abuse need to know that You are not damaged. You did not bring this upon yourself. You did not attract it or seek it out in any way. You do not need to be fixed. You are whole, you are perfect, and you are built to survive. No one who says otherwise should be exempted from criticism. Because it is never okay.

adkyriolexy blogs at Kyriolexy.

It Is Never Okay appears here by permission.

[image via Flickr/Creative Commons]

Cohabiting with Autism

Guest — Thu, 19 May 2011 06:44:58 +0000

“Moms living with autism share their stories!” the headline proclaims. I know what it means. I know what it always means. And I know it will provoke some degree of wrath in me, but I click it anyway, because I’m testing my assumption, and because if I don’t keep up my frustration level, I’ll have nothing to blog about.

As usual, “moms living with autism” means “moms of autistic children.” “Autism families” means “families with autistic children.” “Autistic parents” means “parents of autistic children.” “The autism community” means “the parents-of-autistic-children community.” This is problematic on a couple of levels. First, obviously, because it excludes actual autistic people from consideration. The only reason people can say “autistic parents” in the confident understanding that others will know what they mean is because it is near-universally taken for granted that an autistic person cannot be a parent. The exclusion of autistic people from “the autism community” presumes that autistic people cannot be adults or agents of their own lives.

Secondly, the “living with autism” phrasing not only denies autistic people as the subject, it denies them even the status of object. It was the pro-cure movement, after all, which convinced writers and the politically correct that adjectives are insults, but phrases and clauses are sensitive terminology. The straightforward “autistic people” was banished in favor of the clunky “people with autism” or “people who have autism.” It became very important to emphasize that autism was not the autistic person’s primary or sole defining quality; it was, if anything, merely an afterthought. Certainly it was something that could, and should, be removed without affecting one’s fundamental personhood.

So if the purpose of relegating autism to prepositional phrase is to place the person first, why is it so common to drop the person from the sentence altogether? When “moms living with children with autism” is shortened to “moms living with autism,” note who gets dropped. The autistic person, instead of being elevated to a person who happens to have autism, is lowered to merely a personification of an abstract noun. An abstract noun which, according to Autism Speaks (not “People with Autism Speak”) is a child-stealing monster.

This is consistent with the portrayal of autistic people as vacant, their bodies merely shells in which the demon Autism resides. Autism is ugly, we are told, and a kidnapper, and legitimate grounds for murder. Clearly, we can see that, rather than putting the person first, as the convention purports to do, using “autism” exclusively as an abstract noun eliminates the autistic person from the sentence altogether, rendered not only invisible but nonexistent, our real selves “stolen” or “kidnapped” by this demonic abstraction.

I’m not saying anything new here, of course. I never am. All I can do is point out that this is the sort of thing we can easily challenge: autism is not a thing unto itself. One cannot have a jar of autism. The abstract noun exists only in the context of the people it describes. “Autism” can modify us as adjective or phrase or clause, but we are the integral part of the sentence.

adkyriolexy blogs at Kyriolexy.

Cohabiting with Autism appears here by permission.

[image via Flickr/Creative Commons]

You keep using that word …

Guest — Thu, 05 May 2011 05:00:03 +0000

“Bullying” seems to be the word of the week here in the autistosphere, and some much-needed attention is being given the harm done by bullies and their supporters. There seems, however, to be a bit of confusion about the term’s meaning. Allow me to clarify some of this confusion.

Bullying is a repeated pattern of harassment, intimidation, assault, and abuse. It is intentional; it is targeted. It is based upon an inequality of power.

From this understanding, we can also conclude that certain things are NOT bullying. Resistance to oppression is not bullying. Disagreeing with the goals and actions of an organization or individual is not bullying. Calling out bullying is not bullying. Being intolerant of intolerance is not bullying. Openly discussing social inequalities is not bullying. Saying something someone doesn’t like is not bullying. Sending someone a group invitation is not bullying. Recognizing and responding to oppressive power structures is not bullying. The Southern Poverty Law Center is not bullying the KKK.

Autistic and other atypical persons are bullied every day. We are victims of physical, mental, legal, financial, and sexual abuse at the hands of neurotypical “caregivers.” We have hateful rhetoric spewed about us. We are harassed, intimidated, and slandered by those who claim to be advocating for our best interests. We live under the rule of governments who consider our very existence a threat to society. This is bullying.

But perhaps you feel that autistic self-advocates are bullies, too. Perhaps you are offended at being called a hateful, anti-autistic bigot just because you hold the legitimate, equally valid opinion that we are incompetent, brain-damaged burdens to society. Maybe you don’t see why we can’t just agree to disagree about our right to exist. You may feel marginalized at being called a “neurotypical,” as this diminishes your individuality. Maybe an autistic person claimed that autism has evolutionary advantages, and you feel insulted by the implication that someone else may have an evolutionary advantage you don’t have. Perhaps an autistic person even called you a rude name once, after you patiently and without animosity shared your personal feelings about the tragedy of our existence.

I light a candle for your butthurt. But you are not the victim of bullying. You will, in all likelihood, never face a single repercussion for your hateful, bigoted attitudes, no matter how vocally you express them. The disapproval of a vocal contingency of a completely marginalized group will never cause you harm. Your choice of attitudes, actions, and affiliations will never cause you to suffer the oppression we face for our immutable characteristics. You have the option, if you choose to exercise it, of reveling in your neurotypical privilege and ignoring the suffering of the people whose lives your ideology destroys. You do not, however, get to claim victimhood when your bigotry is pointed out. You can coat yourself in the blood of a virgin, but chances are good you’ll only attract wild dogs.

adkyriolexy blogs at Kyriolexy.

You keep using that word … appears here by permission.

[image via Flickr/Creative Commons]

When Is a Disability Not a Disability? Autism Speaks Has the Answer

Guest — Fri, 29 Apr 2011 05:00:36 +0000

When is a disability not a disability? When it is a “disorder.” Geri Dawson of Autism Speaks made that clear yesterday in her report out from the Research and Innovation session at the White House autism event. She noted that her session had featured a lively conversation about the terms “disability” and “disorder,” and then weighed in on the side of “disorder.” She said that autism is a disorder, and went on to state that unless we think of autism as a disorder we will never think of it as a disability. Although that does not seem to make any sense at all, it’s actually quite astute. It’s not just “doublespeak,” either. It is critical to understand why it’s important to Dawson and Autism Speaks (and to those researchers who want to prevent autism). Dawson did bring up prevention more than once in her remarks.

Why quibble about two words, both of which begin with “D”?

When a person has a disability that person is still a person. That person with a disability has a body, and a mind. That person with a disability has needs, concerns, desires, a personal history, a context of family, friends, and community relations. A person who has a disability has all the legal and civil rights of personhood (or should). That person has (or should have) the right to make decisions (sometimes with assistance, sometimes not) about what they want for their life, including, at least during adulthood, the right to accept or refuse treatments, make choices about where to go and who to spend time with, and when. That person with a disability has the right to be treated with respect, to have their deepest dreams and desires taken seriously, even when the person has what is often called a “more severe disability.” There are documents such as the Developmental Disabilities Act (the DD Act) that presume that a person with a developmental disability has the right to self-determination, inclusion in the community, the right to care and treatment that maximizes the potential of that person with a disability. The DD Act specifies that no person with a disability can be subject to a greater risk of harm than to any other person in the general population. The DD Act offers protections via the Protection and Advocacy (P&A) system. Various other pieces of disability legislation protect people with disabilities. Legislation also protects, or attempts to protect, children with disabilities. Although they have fewer choices in terms of what treatments and interventions they might want to accept or not accept, children with disabilities are protected by law.

A disorder is not a person. A disorder is a collection of “symptoms” or “undesirable” conditions or traits. A disorder doesn’t have a body. A disorder doesn’t have a mind of its own. A disorder can’t be a child, perhaps a child in need of protection. As such, a disorder does not have any rights under the DD Act or any other act. Only people do. A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner that researchers and others see fit. Autism Speaks has a habit of depersonalizing autism (remember the infamous “I… Am… Autism…” video with the creepy disembodied voice?) in order to justify eradication and prevention.

There is one problem with all this, and is the reason I think Geri Dawson’s comments are concerning and also very telling of Autism Speaks’ continued focus in eradicating autism. Those disembodied disorders? They are actually part and parcel of people, people with bodies, with brains and minds, people with disabilities. Every “cure,” “treatment,” and other intervention is not actually carried out against a disorder. It is carried out on and sometimes in, the bodies of real people, including children. Disability is embodied. It cannot be separated from the person who has it. Every attempt to eradicate a disorder has to be balanced against the fact that the disorder is carried within a person. Not so disembodied after all, creepy voices or tragic rhetoric notwithstanding.

Dawson made her comments during the report-out from each of the four breakout session groups. In the Education and Employment group which I attended, we had a productive and encouraging meeting, with much thoughtful and sensitive input from advocates and self-advocates. I heard similar comments from participants in the other sessions on Community-Based Services and Public Health and Healthcare. People were putting their heads together- exploring creative solutions, collaborating, with Administration officials asking thoughtful questions and being responsive.

When Dawson got up to speak, the effect was a big let-down. Here we were all moving ahead, getting ideas, making plans. The “disorder” comment was like a return to the past, a past where the only option was “cure the disorder so that society won’t be burdened with these people.” Dawson’s pronouncement was the only really discordant and almost irrelevant note in the proceedings, most of which seemed to be focused on the things that really matter – services, supports, creating more infrastructure for those services and supports, meeting people’s needs in terms of education, health care, employment. I am hoping that Administration officials, at least in some departments, will move ahead with forward-thinking programs and initiatives that will really help people on the autism spectrum, our families, friends, and communities. I hope less focus will be put on finding causes and cures and more on helping people to live to their fullest potential.

Thank you to the Obama Administration for hosting the event and to the Administration officials who listened and asked provocative and important questions.

Paula C. Durbin-Westby blogs at the eponymous Autistic Advocacy Blog.

When Is a Disability Not a Disability? Autism Speaks Has the Answer appears here with her permission.

[image via Flickr/Creative Commons; click on image for explanation]

Recovery from JSD–My family’s journey

Guest — Tue, 26 Apr 2011 05:00:26 +0000

When my husband and I were about to become new parents, we were typically excited, and also typically naive. We fantasized about our new family and the life our daughter, Serenity Grace, would have. As healthy, able-bodied people ourselves, we had no reason to consider that we could become what was euphemistically called a “special-needs” family.

I realized something was wrong a moment after she was born. She wailed and flexed her hands, her head flopped back. Except for the odd twitching and the primitive animalistic noises she made, she could have been comatose. I spoke to her, and she didn’t respond. Placed on the floor, she could not walk, or even stand. Even in a chair, she could not sit up. She was limp, weak, completely nonverbal and nonresponsive. Her doctor told us this was normal and that she would grow out of it. I knew better. Something was horribly wrong, and I needed answers. I took Serenity Grace to an alternative health practitioner, who, after carefully observing her in his office, gave us the news that would change our lives forever.

He diagnosed her with Infancy Syndrome (IS), the most profoundly disabling category of Juvenile Spectrum Disorders (JSDs). Like most healthy people, I had never heard of Infancy Syndrome, but I soon learned that up to 100 in 100 births involved some form of JSD, making it the largest epidemic in history. IS sufferers are very small and physically weak. They cannot walk, talk, stand, bathe or toilet themselves, or even chew food independently. They are so severely handicapped that intelligence testing is difficult and sketchy, but they are generally considered to be profoundly intellectually impaired. They frequently scream, and often sleep only in short spurts (stories of being kept awake all night by an IS sufferer are common among caregivers). It is impossible for people with IS to live independently; all of them require round-the-clock care. Caring full-time for an IS sufferer is one of the most trying tasks of anyone’s life. Doctors are not sure what causes JSDs, but it is suspected to be a combination of genetic and environmental factors. There is no known cure for JSDs.

My heart sank as I learned these facts. My daughter was profoundly ill and no one knew why. Because JSDs are so little-known, in spite of their prevalence, adequate research on treatment options has not been done. Our doctors cautioned us that all treatments were considered experimental, and there was no guarantee of results. But I was willing to try anything to give my girl a chance at some semblance of a normal life. We started with behavior modification, the most established and widely-used treatment (there is evidence of its use in the treatment of what are now recognized as JSDs throughout human history), but because of the severity of Serenity’s IS, it was of little use. I turned to the internet for answers. There I learned about a new alternative treatment from a group called Defeat Infancy Now. It involved multivitamins, herbal supplements, frequent colon cleanses, and a powerful all-natural medicine called hydrogen hydroxide.

Almost immediately, we noticed improvements. Within weeks of beginning the DIN regimen, Serenity began holding her head up, making eye contact, and smiling. She began screaming less and sleeping for longer stretches. I wept with joy and gratitude the day she sat up on her own. A cascade of milestones followed—crawling, babbling, standing, eventually taking first steps on her own and tentatively speaking real words. The DIN protocols brought truly miraculous recovery. A year after we had begun treatment, Serenity’s doctor upgraded her diagnosis from IS to Childhood Syndrome, a milder, higher-functioning form of JSD. People with CS, though still significantly impaired, are often able to walk, talk, and, with proper supervision and assistance, manage basic self-care. When we learned that Serenity might have hope of having conversations with us, being toilet-trained, even reading and spelling, I knew that our DIN specialists were truly angels doing the work of the Divine.

Our journey was still not an easy one. As Serenity Grace progressed, her behavior problems worsened. Her doctors told us this was a natural response to her body’s purging itself of toxins. We had to intensify her behavior modification regimen to 12 hours a day, add supplements of lavender essence and moondrops, and triple her dosage of hydrogen hydroxide. She became obsessed with imitating the behaviors of healthy people, even carrying around a replica of a person and pretending it was an IS sufferer, miming caring for it. It was heartbreaking to watch, but her therapist told us it was her way of processing the trauma of her own IS recovery. Her doctors urged patience, diligence, and hope. Some days she progressed more than we ever thought possible. Some days there were setbacks. We prayed every day for a full recovery, and never gave up hope.

Today, more than a decade after that first fateful day, Serenity Grace is a changed person. She is reading, writing, even cooking. In conversations, an untrained person can scarcely detect that she is handicapped. Her doctors believe that if she continues to recover, her diagnosis may soon be upgraded to Adolescence Syndrome, the mildest and highest-functioning form of JSD. They tell us that people with AS are sometimes, with proper treatment, able to lose their JSD diagnosis altogether. Some are even capable of employment. However, our fight is far from over. We have sold our house and all our assets to pay for Serenity’s treatments, and we are now on the brink of bankruptcy. Hydrogen hydroxide can cost over $15 an ounce, which, because JSDs are not recognized disorders, is not covered at all by our insurance. The care and treatment of people with JSDs can often plunge a family into dire poverty.

In spite of these clear hardships, JSDs remain controversial diagnoses. Some claim that JSDs are not disorders at all, but are normal phases of life that all healthy people go through. There are even JSD sufferers (or “kids” as their community has taken to self-identifying) who say that they are happy as they are and do not wish to be changed. Their claims may, I suppose, have some merit in the cases of very high-functioning sufferers of Adolescence Syndrome (a few of whom are nearly indistinguishable from healthy people, except for certain propensities to impulsivity and sullenness). However, these assertions could never be reasonably made about people suffering with severe Infancy Syndrome, as Serenity Grace was before we began treatment. No one could look at her as she was—limp, helpless, nonverbal, immobile, soiling herself, completely dependent—and call that a “normal, healthy stage of life.”

Juvenile Spectrum Disorders are treatable if caught early. But families need help. We need funding, care options, research, better treatments, and most of all we need a cure. We will not stop fighting until no families have to suffer as we have. Daily progesterone supplements are believed to prevent new JSD cases with over 99% efficacy, but millions of new JSD sufferers are born every day. Please pledge your support to your local chapter of Infancy Speaks, and march with us as we demand answers in our annual Walk For Juveniles. With hope, all things are possible.

adkyriolexy blogs at Kyriolexy.

Recovery from JSD–My family’s journey appears here by permission.

[image via Flickr/Creative Commons]

Autism Acceptance for Autism Awareness Month

Guest — Fri, 15 Apr 2011 12:30:33 +0000

Well, Shakers and public, it is April, and that can only mean one thing to this autistic blogger: Autism Awareness Month is here for another 30 days, and without a time machine, there’s no escaping it.

Autism Awareness Month has been a thorn in my side for as long as I’ve been an adult. I am at heart an attention-seeker, so you would think having an entire month devoted to people like me would be a joy to behold. But that’s the problem behind Autism Awareness Month. It isn’t about me. It’s not about me—the autistic person. The entire conception of Autism Awareness Month doesn’t even revolve around autism, not the kind I have or the kind that anyone I know lives with. The ‘autism’ of Autism Awareness Month is a mysterious, esoteric, silent force, which magically swoops into the homes of unsuspecting families, and replaces regular, darling children with empty husks, ala the Changelings of ancient myths.

It’s not even entirely about the children who are these so-called “empty shells.” The entire focus of Autism Awareness Month seems to be divided between what sad, pathetic existences they must lead, and the potential for a real, neurotypical, normal child that lies just around the corner in the next type of chelation, cure, or therapy. Rather than shedding light on what autism is, Autism Awareness Month has served to cloud autism further in lies, half-truths, pity, and the tyranny of low expectations.

I’ve watched as a series of Autism Awareness Months have gone by, and nothing seems to have changed in the public eye. I’ve seen promoted and have attended various Autism Awareness Events over the years, and the funny thing is, they almost universally don’t bother to think of how autistic people might function at these events. There is usually loud music, so loud that those with sensory processing disorder may be forced to not attend. The crowds are often suffocating, whether the event takes place at a conference hall, hotel, or outdoors, with no regard given to how someone who functions poorly in large crowds may feel about being squeezed in with so many people. There are usually no rules restricting the use of perfume, and I can remember coughing through clouds of it once and deciding I’d rather leave than have my sense of smell continuously assaulted.

There’s something deeply problematic about an event centered around autism which doesn’t consider the needs of autistic people in order for them to equally participate.

That’s not even getting to the genuine content of the events. Typically, they will consist of speakers, usually doctors, or parents, or on a vanishingly rare occasion, an actual autistic person. But usually this autistic person is verbal, articulate, and, even while promoting themselves as an autistic person worth listening to, they sometimes fail include all autistic people under their umbrella of acceptance. Often, they will promote the notion that those with special gifts and talents, who can more or less live independently, like themselves, should be given the option of living with their autism. But they will often promote, in a swirl of cognitive dissonance, the idea that those not like them, without these special gifts and large vocabularies, well, who cares, cure them. The doctor speakers usually only consider autism within the confines of the medical model of disability, and usually don’t speak about autistic people as individuals, but singular entities with a shared host of problems which we need to research, and usually don’t talk about the experience of autism as a teenager or adult.

Parents will usually be a bit more personal and intimate, but their speeches can range from “I love my son/daughter dearly and want to do everything I can to make sure they’re happy and successful” to “My child was stolen away from me and replaced with this screaming, in-affectionate demon!”

These alienating incidents aren’t necessarily always the case, but they are frequent enough for me to not be surprised when I feel like an unwelcome stranger at an event about my own disability—which certainly isn’t (or shouldn’t be) the goal.

It doesn’t have to be this way, though. The only thing standing between the truth and the current situation is the concept of Autism Awareness itself. It’s time for a new idea, one that seems to be heresy to the people pushing Autism Awareness, but has been the crowning point of the disability community at large for 20+ years now: “Nothing About Us Without Us.” Or, to put it more succinctly, it’s time to throw away Autism Awareness, and replace it with Autism Acceptance.

The fundamental difference I see between the two is that Autism Acceptance is being spearheaded by autistic people themselves. People from all walks of life and in all corners on the spectrum are coming forth and working to tear down these myths established by the Autism Awareness contingent and the Medical Model of Disability. It’s a collaborative effort meant to showcase that, during this month, which is ostensibly all about our disability, we have a right to talk about what our disability means to us, and what public attitudes towards it mean for us.

Plus, Autism Acceptance isn’t confined to April. For me, Autism Acceptance is every day. It took me years to understand the harm disablist rhetoric did to my self-esteem, my perception of my own talents and passions, and how I handled my limitations. It’s a powerful thing for an autistic person to learn how to love themselves. It will also be powerful for non-autistic folk to take a moment to see past the puzzle ribbons and the grim statistics meant to show how autism affects more people than diabetes, cancer, and HIV.

Look past all that garbage foisted onto you by those who neither know nor truly respect autism and autistic people, and you will see that what we need from you most is not a month set aside for the purposes of degrading and pitying our existences and experiences, but constant, unwavering support, the patience to listen to our side of the story, and the power for you to put aside your own ideas about who should be listened to, based on what credentials, and to give those of us with the disability as a constant presence in our lives a chance to speak. Just because someone can’t talk (in your language of words and verbal dialogue) doesn’t mean they have nothing to say.

If you want to look for the signs of an Autism Acceptance/Neurodiverse-friendly event, then I recommend looking to the example of Autreat, which pledges to make it a sensory-friendly environment for autistic people, respects our personal space, allows flexible scheduling for those who feel overwhelmed, and is run by autistic people for autistic people. Autreat strives to be the pinnacle of an autism-friendly event.

If you are interested in improving a local event, try to think about what sensory issues I listed above, and think, “How can I address this?”

Look for autistic speakers to book, from all ends on the spectrum. The autism blogosphere is a great place to start, or you could find a local person with autism who may want to share their story. Sometimes, the best way to make your event autism-friendly is to just engage with autistic people to see what they would like to see at their local autism event. Since it’s about their disability, they’re best qualified to tell you what will attract those with autism to participate in these events. And really, isn’t that the best thing you could hope for at your own Autism event?

You can find more information on Autism Acceptance events here.

Leah Jane blogs at The Quixotic Autistic.

Autism Acceptance for Autism Awareness Month appeared first at Shakesville, and is reproduced here by permission.

[image via Flickr/Creative Commons]

Because Screaming Gets Boring After a While

Guest — Fri, 08 Apr 2011 05:00:48 +0000

I’d been on something of a hiatus from online autism advocacy, because I’ve had a real life, and because even my perseverant spirit can occasionally be worn down by circular arguments upon circular arguments upon weird unquestioned prejudices. I do try to understand, however. I do understand that the autism acceptance movement is relatively small, new, and unknown, and that many people are unfamiliar with it. I can deal with that. I do understand that the movement is highly unpopular, going against nearly all mainstream thought on the subject, and that many people disagree with it. I can deal with that.

What has me driven to distraction is the combination of the two, those who know nothing of the movement, and little of autistic adults at all, yet are adamantly convinced that we are wrong, if we even exist. This tempts me to acts of violence. But, rather than screeching in rage and cursing the souls of the ignorant, I will attempt to outline some basic concepts of which I’d challenge my critics to be aware before they begin railing.

1. Reasonably intelligent, articulate autistic adults are not the exception to the rule. Assuming that we are is usually a good indicator of lack of experience on the matter, but that doesn’t stop anyone from clinging to the assumption. While I would like to be flattered by the backhanded compliment that I am the most articulate autistic person you’ve ever encountered, I know that all this means is that I am probably one of the few (if not the only) autistic persons above age 13 you have ever met, read, or encountered, because there are some exceptionally brilliantly articulate autistic people in the public sphere.

2. Autistic adults are not autistic children. Autistic children grow, develop, mature, learn, and over the course of 18 or so years, become autistic adults. This is a point which would seem to be self-evident, yet many people are under the impression that autistic people are apparently frozen in some early childhood stage, and that the abilities of a young child can be used to accurately predict the abilities of the future adult. They cannot.

3. We aren’t against teaching skills. While the autism acceptance movement is far from monolithic, and there is much disagreement within it about what sorts of “interventions” may be beneficial to autistic children, it is safe to say that virtually no one holds philosophic opposition to teaching skills—including but not limited to speaking, reading, writing, math functions, soap making, academic research, self-care, housekeeping, budgeting, ballet dancing, cooking, typing, makeup application, child care, driving, suitcase packing, or list compiling—to children, including autistic ones.

4. Mental disorder is a social construct, not an objective scientific reality. That autism spectrum conditions are defined as disorders is no more evidence of an objective reality than that hysteria was once defined as a disorder.

These points are not obscure facts or controversial partisan assertions; they’re basics that people who voice strong opinions on autism-related topics should really know already. Willful ignorance is not a valid point of view.

adkyriolexy blogs at Kyriolexy.

Because Screaming Gets Boring After a While appears here by permission.

[image via Flickr/Creative Commons]

Autistics Speaking Day

Guest — Tue, 05 Apr 2011 05:00:36 +0000

Being autistic is being set up to fail again and again, and having your inevitable failure attributed to your disordered brain.

Being autistic is being set up to fail again and again, and succeeding anyway and having your success attributed to treatments.

Being autistic is succeeding anyway, and being told that your success doesn’t matter because you still aren’t what your parents wanted.

Being autistic is having strangers pity your parents because of you.

Being autistic is having strangers express their pity in your hearing, because you obviously can’t understand them.

Being autistic is being bullied and abused every day and being sent to therapy for it, because you’re the one whose social skills are considered lacking.

Being autistic is expressing what you think, feel, and desire, and being told that you are in denial.

Being autistic is having other people dictate how you really feel.

Being autistic is being denied the things you enjoy “for your own good.”

Being autistic is being told so many times that your pain is pleasure and your pleasure is pain that you come to believe it.

Being autistic is being driven to extreme frustration every day, and being autistic is having the frustration inflicted on you blamed on your autism.

When I thought about what to write for Autistics Speaking Day, I considered what a cruel bind autistic self-advocates are put in when we discuss our struggles. Frankly acknowledging the hardships we face is interpreted by anti-autistic factions as evidence of the inferiority of our condition, proof that autism is suffering and we would be better off cured. Emphasizing, instead, the benefits, strengths, and exceptional abilities of autism, though, brings charges that we are whitewashing the disadvantages, or that we are so minimally impaired as to be not really autistic. This conveniently absolves pro-cure neurotypicals of the role they and their pathologizing attitudes play in autistic hardship.

My father always told me that I had an exceptional mind. This was why I could read adult books and decipher arithmetic and follow his wandering lectures on various topics at barely four years old. He didn’t mind that I was unable to speak to my peers; it only reduced my vulnerability to being corrupted by them. While he undeniably overestimated my superiority, his unconditional support was a lifesaving counterbalance to the relentless messages to the contrary from teachers, therapists, relatives, peers, and strangers.

A few of my earliest memories involve being introduced at a family gathering and discussed. Why doesn’t she talk? What’s wrong with her? I’m so sorry…. School was worse, with its buzzing lights and pushing crowds and devious people my size hellbent on poking, kicking, grabbing, and beating me into submission. The teachers occasionally intervened, but mostly allowed it in the hopes that I would learn to assert myself. I didn’t.

I was sent to doctors and therapists who claimed that my idiosyncrasies were the result of emotional dysfunction, trauma, or low self-esteem. After prolonged indoctrination, I began to half-accept their premises. I didn’t start out believing that my sensory seeking and social awkwardness was based on a desire to punish myself, but after being told this so many times, I couldn’t help but doubt myself. Their propaganda became self-fulfilling as I began to believe that I was dysfunctional and deserving of punishment. In any other context, this would be called severe emotional abuse, but for neurodivergent children, it is considered necessary treatment.

As I got older and more articulate, the discrimination I faced for being autistic changed forms. Because I appeared intelligent, people could not fathom that I would have difficulty understanding basic things like figures of speech, subtext, visual-spacial perceptions, and pop culture references. I could not, in their minds, have legitimate difficulties, so I must have been rude, or lazy, or intentionally obtuse. The slightest mistake would undo my hard-earned status of hyper-competent and instantly reduce me to my childhood status of “insane.” As I was so intimidated by the prospect of being outed, I learned to nod along and feign understanding. Appearing competent became much more important than being competent, which led to some of the most devastating poor decision-making of my life.

When I became a parent, however, the illusion of normalcy was stripped away. My firstborn inherited my autism, and I had to invent my own way of helping her. Institutional support for parents of autistic children, focused on treatments and cures and the obsessive quest to make children as normal as possible, was repugnant to me, and I refused to let my daughter suffer the way I had. What we lacked was a model for support and learning that was not based on a disorder-treatment model. This is what the neurodiversity movement is trying to build through the personal stories of autistic people, in their own words. Personal stories in which the very real pain and suffering and struggles and obstacles faced by autistic people are not arguments against autism, but arguments against the oppressive model into which autistic people are painfully forced. Autistics are speaking out and will not be silenced. We do not want a cure. We do not want to be made normal. We do not want to prevent future autistic children. We want radical social restructuring such that future autistic children are accepted, nurtured, and supported, and we won’t need silence campaigns for our voices to be heard.

adkyriolexy‘s Autistics Speaking Day originally appeared on November 1, 2010 as the inaugural post at Kyriolexy, and is republished here by permission.

[image via Flickr/Creative Commons]

Dispelling Ten Myths About Introverts

Guest — Mon, 04 Apr 2011 05:05:43 +0000

As most SVP readers know far too well from first hand experience, the myths about introverts abound. If you get tired of being misunderstood by friends, family, and coworkers, consider printing this list out and handing it to them next time they insist you really do want to attend that company picnic or huge party.

1. We are not all shy.

Shyness is actually a trait that is quite separate from being an introvert, and while some introverts are shy, there are also some very confident introverts, just as there are many shy extroverts. Shy involves being nervous or timid about social situations, or having a fear of being humiliated or in the spotlight. Introvert means that we draw our emotional and psychic energy from solitude. VERY different things.

2. We are not anti-social.

Quite the contrary! We have many close, dear friends, but we also recognize that being with people just for its own sake does nothing for us and, in fact, drains our batteries right quick. We love to connect with people, but not just mingle with hordes of people for its own sake.

3. Introversion is not a mental health issue.

In spite of the American Psychiatric Association’s current inclination to view it that way, introversion is a temperament, a way of being in the world, it is most decidedly not a mental health issue. Unfortunately, as our psychiatric profession puts more and more emphasis on medication and external behavioral therapies, and total conforming behavior, that distinction is getting lost. I think the argument could very easily be made that the drawbacks they often attribute to being an introvert come from introversion being MISUNDERSTOOD, rather than introversion itself.

4. We don’t not like people.

We DO like people! In fact, we love quite a lot of them. We just like to do it on our own terms. In fact, part of our desire to recharge is so that we may connect with those we love in a more meaningful way.

5. We do contribute to society.

Puh-lease! Artists, writers, philosophers, therapists, the sciences—all these fields are dominated by introverts. There are also introverts in just about every field you can name, from the clergy to teachers to nurses to pilots and engineers. Well, maybe not salesmen, although I bet there are some introverts out there who have had very successful sales careers. The thing is, the very thing that makes us introverts—that inward focus and desire to surf the world of ideas as if it were one giant wave is what makes our contribution to society so valuable.

6. Introversion is not a weakness that must be overcome.

It is not something we need to be cured of, or coaxed out of, or shamed from. Just FYI, many of the traits we introverts have are (or at least were) considered virtues and the signs of a contemplative mind.

7. We do not have intimacy issues.

In fact, introverts have some of the closest, most in depth, intimately connected relationships on the planet. Mostly because they do not look for connecting for its own sake, or collect acquaintances like baseball cards, but because when they do spend the time and energy to have a relationship, it will be a deeply meaningful one.

8. We are not broken extroverts.

Really. We’re not. Stop trying to fix us already. Remember how years ago they used to try to ‘fix’ left handed people so that they would become right handed? Yeah, that didn’t work out so well either and created LOTS of problems.

9. Introversion is not the same as social anxiety.

Introversion is simply the need to recharge in solitude, we simply get our energy from solitude. Being around people does not make us anxious, although it can make us bored, annoyed, overwhelmed, and just plain tired. And again, a lot of social anxiety can be traced to trying to force introverts to do something that does not come naturally for them. Sort of like putting an extrovert in solitary confinement. We don’t claim they have solitude phobias, do we? (Although, come to think of it, perhaps we should.)

10. Introverts are not self-absorbed.

We are self aware, which is an entirely different thing. The thing is, when we are alone, we’re not just thinking of ourselves and our feelings, we’re thinking of you and your feelings, the human condition, society, spiritual matters, in general, pondering deep thoughts. Sometimes those include our selves and many times they emphatically do not.

R.L. LaFevers is a writer and student of human nature, as well as co-proprietor of Shrinking Violet Promotions.

Dispelling Ten Myths About Introverts appears here by permission.

[image via Flickr/Creative Commons]

To Old Friends and Family

Guest — Fri, 01 Apr 2011 05:27:50 +0000

When I speak of Autism, please know I love your support and understanding.

When I speak of my Autistic children, please know I understand them very well because I’ve been diagnosed myself.

When I speak of the current state of things, please know I am happy with my life and my children, but know there’s already room for improvement.

I love that you are interested in what is going on in my life. It’s been a long time since many of us have spoken. Our lives diverged and this little thing we call the internet has connected them once again. It seems we now have something in common. You may teach in a Special Education classroom. You may be a Speech, Occupational or Physical Therapist. Maybe you are just in education. Whatever it is, it’s amazing to see how our worlds collide once again. But this time, we are not peers or relatives, we are on opposite sides of the same quest. To make life for those with Special Needs fulfilling, independent and happy.

This doesn’t mean we’re fighting against each other.

It means we have two unique perspectives.

Would you like to reconnect?

I know I can always use more friends, but what I know more is my children need more allies. More people who understand and accept them as they are. You once accepted me for who I was. Many of you even helped build me up. You supported me through school with your friendship and kindness and faith in me. You supported me when I had my ups and downs and I became the person I am today because you were around.

I’m here if you have any questions.

To Old Friends and Family appeared originally at AS Parenting, and is republished here by permission.

[image via Flickr/Creative Commons]

Review: All Cats Have Asperger Syndrome

Guest — Thu, 31 Mar 2011 06:00:21 +0000

Both my children are on the autism spectrum. Since my son Nicholas is almost twelve and higher functioning professionals who meet him for the first time always assume he has Asperger Syndrome. This is not the case because Nicholas had a vocabulary of under ten words at the age of three. The main difference between the two diagnoses is the lack of speech or a speech delay for those with autism. This might be why a good percentage of those diagnosed with Asperger Syndrome, also known as AS, are diagnosed later in life — either as teens or young adults.

Since Nicholas is a big cat lover I went ahead and purchased All Cats Have Asperger Syndrome. Just like there are people who refer to someone as either having autism or being autistic, there are some that use the term Asperger’s Syndrome, which is how I usually spell it out. The book uses the singular term.

The author, Kathy Hoopmann is the author of a continuing “Asperger Adventure” series for young children with titles like Blue Bottle Mystery, Of Mice and Aliens and Lisa and the Lacemaker. All these books are published by Jessica Kingsley Publishers. Most likely I will be getting one of these to peruse at some point in time.

All Cats Have Asperger Syndrome is a great addition for the coffee table for any residence. I would also suggest this for therapist, doctor and school offices. The audience will gain insights into Asperger Syndrome through the delightful photographs of cats and kittens in various forms of play and vivid times of distress, alone time and funny mishaps along the way.

The captions are above and below the photographs, capturing the uniqueness of each image with how it relates to Asperger Syndrome. The book begins by showing the first signs of Asperger Syndrome through a kitten sleeping, indicating someone can be very young in the process of diagnosis and awareness.

The photographs go on to show how an Asperger child has their own way of looking at things and sometimes they just want to be left alone and not held by another person. The kittens are snuggling in a blanket and with a toy, indicating how someone can seek out their own comfort through various attachments.

There is a photo of a cat walking around in an area that is clearly not safe. This image portrays a child or adult with no real sense of danger. There are also pictures showing how they might be startled and have a heightened sense of hearing or be sensitive to various materials or certain smells. The look on the faces of the cats puts it all into another perspective to see how sensory issues affect children and adults with Asperger syndrome.

A cat sits in the middle of the snow and does not seem to be bothered by the coldness of it while another cat places their whole head inside a cooking pot due to being a fussy eater. These photos assist in getting the message across to the reader on other differences among those with Asperger syndrome.

Then there is an image showing a cat wanting to drink the milk in the same cup each day, basically sticking to the same routine. There are photographs depicting cats playing together and then doing things that other cats might not want to do. These teach that sometimes it is easy to make friends and then a child or adult might enjoy doing something that is not typical of their age group, but still okay to take part in.

A cat will play with string for hours on end, which is true for someone with Asperger syndrome who might want to watch the same movie all daylong. Other photographs show a cat being bored, having a tantrum, language and vocabulary being mixed up and a funny one with a cat in a bag as an example of how someone with Asperger syndrome do not always get idioms and sayings that are funny to others. Those with Asperger syndrome may have a tendency to take things very literally, which is why the cat is inside the bag next to the actual saying to showcase this.

Those with Asperger syndrome seek answers in places others might not think to look and some may think he is a genius. Another personality trait of those with Asperger syndrome is not being able to tell a lie and being totally honest, which can cause embarrassment to many.

To pinpoint how someone with Asperger syndrome chooses their friends differently there are photographs of a cat with a mouse, a tortoise and lying around with a gerbil. There is one image my son Nicholas did not really like and upon looking it at several times I also felt it was disturbing since it can be confusing if someone is pushing the pages fast and not realizing it is the hands of an old person petting the head of a kitten who is wrapped in a blanket. This one did catch us off guard and Nicholas likes to bypass it each read through.

All Cats Have Asperger Syndrome ends on a positive side showing how those with Asperger syndrome have amazing powers of concentration and can reach the top of their chosen field. The images and captions state a business tycoon, judge and cat professor. The end result is that an Asperger child is just like any other child that will need love, encouragement, advice and space to be themselves.

It is my opinion that All Cats Have Asperger Syndrome is suited for both children and adults, professionals to help siblings understand Asperger syndrome, as well as a book to help explain their own diagnosis to those who have Asperger syndrome. An adult with AS can share the book with their own children, children of their friends, relatives and coworkers.

A child entering a new school who has Asperger syndrome might want to share this book with their classmates, a parent might want to give a copy to a new teacher or read it to the class the first day of school. This is a nice, gentle way to teach awareness to a wide range of audiences, both young and old who need to comprehend that Asperger syndrome is not the end of the world.

Consider getting a copy for an Easter Basket, Mother’s Day, Father’s Day or graduation day present for someone to remember what Asperger syndrome is all about. Newly diagnosed families will have examples through these pages to share with family members when explaining about social skills, and the traits those with asperger syndrome have. This also highlights the highs and lows, what makes someone different and gives a basic understanding of what living with Asperger syndrome is all about.

For those that have a family member with Asperger syndrome you might want to look into the Wright & Wong mystery book series. I have the first book in this series, The Case of the Prank that Stank. The character in these books is a boy in middle school who has Asperger syndrome. These books are geared to the young reader.

Bonnie Sayers is Bella Online‘s Autism Spectrum Disorders Editor.

Her review of All Cats Have Asperger Syndrome appears here by permission.

Theories of Autism: Lessons from Dr. House

Guest — Fri, 25 Mar 2011 06:00:39 +0000

I’ve just been watching House. I say watching. To be honest, the details of this week’s plot passed me by as I was trying to follow it whilst simultaneously eating my dinner and having a conversation-slash-argument about of all things carbon taxing. Trust me, House was way more interesting.

Anyway, the plot is pretty much the same each week: patient shows up in the hospital with a weird combination of symptoms; House and team conduct various ethically dubious tests; initial diagnosis is disconfirmed, usually by some new symptom; finally House ends up with the correct diagnosis and a single cause that explains all of the symptoms. The patient this week had some extremely rare syndrome that gave her photographic memory and kidney failure.

So here’s the question I found myself asking: what lessons does House’s anarchic approach to medicine have for autism research? I’m not talking of course about his dodgy ethics, the lack of informed consent or the disregard for proper procedures. We’ve had enough of that recently thank you very much.

The crucial point is that for House the cause he ultimately identifies has to explain everything.

In case you missed Autism 101, autism is defined in terms of impaired social and communication skills, co-occurring with repetitive behaviours and/or restricted interests. But it’s oh so much more than that. Associated features include intellectual disability, epilepsy, sensory hypersensitivity, motor coordination problems, memory difficulties, face processing impairment, and so on. Autism is also associated with certain strengths, particularly in perceptual processing, and a disproportionate (but still rare) incidence of savant skills including amazing feats of artistry, musicianship, and calculation. None of these affect everyone with an autism diagnosis but they all co-occur with autism to an extent that can’t just be down to blind chance.

All of this demands an explanation and it’s perhaps not too surprising that people can’t help but find autism fascinating. If House could explain autism, it would be the best episode ever.

The genius behind House (and yes I do realise he’s a fictional character) is the premise that, although there are many potential explanations for a given individual symptom, start looking at combinations of symptoms and suddenly the plausible underlying causes are reduced drastically.

I do wonder whether autism researchers may be missing a trick by not doing this as much as they could. Social difficulties on their own could have multiple causes. But social difficulties combined with motor discoordination and epilepsy? Suddenly the possibilities are no longer endless.

But here comes the big “however.” House is dealing with a single patient. He knows that all of the symptoms affect that one patient. With autism, on the other hand, we’re dealing with a group of people who, in a very general sense, have some things in common, but as individuals are all different from one another. We know, for example, that people with an autism diagnosis tend to have issues of social anxiety and also that many are hypersensitive to sound. But we don’t know if it’s the same individuals in both cases. So should we be thinking in terms of a common mechanism that could neatly account for both features, or would this be trying to explain the co-occurrence of two things that never actually co-occur?

Over the years, a number of grand unifying theories of autism have been proposed that try and link together different symptoms (my first ever paper, speculative as it was, arguably falls into this category). But they are all theories of autism, assuming that autism is a single entity.

I’m not suggesting that we need a completely new theory for every individual. But I do genuinely believe that if we’re ever going to make sense of autism, we need to recognise the fact that the core symptoms that define autism can come about by a number of different means. Any given theory probably won’t apply to everyone.

The lesson from House is that looking at all the ‘symptoms’ might help identify these different causal pathways.

As ever, I’d love to hear your thoughts.

Jon Brock is a research fellow at the Macquarie Centre for Cognitive Science in Sydney, Australia. He blogs at Cracking the enigma.

Theories of Autism: Lessons from Dr. House appears here by permission.