Friday, June 29, 2012

Autism, Parenting, and Summer: Keeping Busy

Shannon Des Roches Rosa

What do we do when my eleven-year-old autistic son Leo is out of school for the summer? We plan, and we keep very, very busy.

We rely heavily on visual schedules to structure Leo's unstructured days. These can be laminated paper (below) or via iPad apps like First-Then Visual Schedule, Routinely, or ChoiceWorks. These schedules let Leo anticipate what his day will be like, and help reduce any related anxiety. Plus Leo is a visual schedule pro, and can now help put his schedules together.


We figure out what Leo likes to do. We focus on the things he likes to do that we can make happen. Leo likes swimming and hiking. He likes balls, and trampolines. We can make those things happen.


I cut out other activities, and responsibilities. Leo is an energetic, 1:1 kid, and I need to keep up with him. This is not a time for me to take on new projects at home or at work. Especially since I am an introvert, and Leo's two sisters are also on summer break. Extrovert parents may thrive on all the action; I enjoy it but am quickly drained by intense social activities -- even when the people I'm socializing with are my own children. So, I try to be careful about not doing too much. I try to stay in touch with and enjoy the present.


We plan excursions with destinations that have pay offs for Leo. He's willing to go to a new place if it has excellent climbing or hiking potential -- or has ice cream (he and his sisters have recently become acquainted with San Francisco's Humphry Slocombe).


It helps to live in an area undergoing a playground renaissance. Leo loves playgrounds, as do his sisters. He needs physical activity, craves it. As he is an exuberant boy, I choose playgrounds and times of day that are less crowded, to minimize the chance he might accidentally bowl over a toddler or two. Less crowded is also important as he's starting to get irritated with my shadowing him; he wants more freedom, and I want him to have it.

Climbing in Dolores Park

More freedom is easier in the great outdoors, when hiking or bouldering. Though Leo does enjoy company, too. So we hang out with people who get Leo, who enjoy his company, who like to do what he likes to do. It helps to have a built-in set of cousins nearby. 

Clambering!

It's not always easy for Leo to be out of school, and he still gets frustrated from time to time. But for the most part, if we can plan our days so Leo stays active and busy, he's happy and so are we.


What are your own strategies for staying even-keeled during the summer?

Wednesday, June 27, 2012

Aspie Like Me: Jean's Diagnosis Story

Jean Winegardner
www.stimeyland.com

This post is an important one to me, folks. Naturally that means I'm going to do something most people do when they are discussing matters of deep personal introspection. I am going to quote an Adam Sandler movie.

In the movie Punch Drunk Love, Sandler's character is talking about how he doesn't know if he needs to see a psychiatrist.

"I don't know if there is anything wrong," he says, "because I don't know how other people are."

I saw that movie back in 2002 and I barely remember the plot, but I remember that line. It touched something in me that I'd felt for a long time. Something was different about me, but I didn't know if it was real or just me imagining that I felt different than everyone else. How could I know?

For the most part though, what did it matter? I was living my life, I was doing my thing.

Then I had Jack and he was different too. And I started to learn about autism. When I would read books about autism, I would see myself in them. I make notes in margins of books when there is something I want to remember and in these books about autism I would sometimes write "Jack" with an arrow pointing to a passage and I would sometimes write "me" instead.

I would read things written by adult autistic individuals and I would recognize myself.

I would think back to my childhood and my teen years and my young adulthood and I would remember the choices I had made very consciously to adopt ways of being to be like everyone else and I would also remember some of the completely clueless things I had done. I would read about autism in children and young people and recognize thoughts and actions from my own childhood.

I would read about autism in girls and women and nod as I learned how it is different for them.

I read so many times that parents of children with autism were diagnosed after their children. I wondered if I should be one of them. I wondered if it was the power of suggestion or if I really was different. I didn't know, because I didn't know how other people were.

Several years ago, I recognized my sensory processing disorder and very confidently self-diagnosed myself. In this case, I knew how not like everyone else I was. My auditory issues are the most intense, but I have very significant tactile issues and, to a lesser degree, some other sense issues. Learning that my aversions were based on my neurological makeup and not just a result of me being kind of uptight meant a lot to me.

That SPD self-diagnosis was a huge relief. I had spent years thinking something was wrong with me because I could hear -- and was intensely bothered by -- sounds that no one else noticed. I made a lot of people feel bad because I didn't want to be touched or, in certain cases, hugged before I could tell them that there was a real reason. I could go on (trust me, I could go on), but I think you get the point.

I have said, "I could well be on the spectrum myself," more times that I can count. I would toss off that phrase casually, and for a long time that's how it felt. I was fine. I was living my life. I needed to help my kid.

So I did. And I did. And I still do.

But after a while, "I could well be on the spectrum myself," became, "I think I'm on the spectrum," and that casual feeling became less casual and started to feel more like self-knowledge that could help me come to terms with my head space.

I have never been a person who would be comfortable self-diagnosing myself as someone on the spectrum. I respect those who do, but in addition to all the time I spent wondering if I were on the spectrum, I also spent a fair amount of time questioning if I could be. After all, I had adapted so well to the world. People who know me would probably never suggest that I'm on the spectrum. What if I were wrong? I needed something definitive.

Something definitive, however, required saying, "I think I'm on the spectrum," to someone other than myself. I turned to Sharon daVanport of the Autism Women's Network and sent a neurotically long email to her. I will probably save her response forever because it was so very kind and supportive. Her words confirmed what I felt and also gave me a tacit permission to pursue a diagnosis. I will be forever grateful for the time she spent writing back to me.

My next steps meant that I actually had to talk in person to three-dimensional people in my world. After years of casually talking about it, it took me a really long time to be able to get the words out to Alex. I sat on a couch on the opposite side of the living room from him and watched him read on his computer for a long time as I tried to get my mouth to say the words: "Do you think I could really be on the spectrum?"

I didn't tell anyone else. It wasn't something I could say to anyone. I don't know why. I just couldn't. Although to be honest, there are a lot of things that I just don't say to anyone. It's what I do.

I don't know that Alex understood my need for a diagnosis, but he was extremely gracious in accepting that I wanted to spend a fair amount of money to get one. From there, it was a matter of finding someone with the skills and availability to assess me.

I wanted to make sure that I got the right person because I really wanted an answer. I wanted to know if I was on the spectrum, but I also wanted to know if I wasn't. I needed to know if I wasn't, then what was I? Was I like everyone else? Or was there something else going on in my brain?

I was able to find someone after a few weeks and we spent several hours together over two sessions doing the testing. When we met to go over the results, I felt that I already knew most of what she had to say.

I ended up with an Asperger's diagnosis.

I also ended up with diagnoses of dysthymia and anxiety, which will probably surprise no one. Those actually knocked me for way more of a loop than the Asperger's could have. Especially in terms of some things in the report, which I recognize as completely true, but were a little difficult to hear.

For example, I like to look welcoming, but I really have my guard up at all times. Evidently the picture I drew of a house helped her come to this conclusion. I think it might have had something to do with the fact that I drew curtains and a cat in the window, but then I drew what looked like bars over it.

(They were supposed to be window panes, not indicators of my demeanor as a porcupine, which is something Alex has called me for a long time.)

I know that a lot of people I know will be surprised by my Asperger's diagnosis. Even when I tell people about something so common as my social anxiety, people are surprised and say they would never know. I understand this. I have adapted extremely well. I am very good at watching people. I have had nearly 39 years of practice.

I know how to act. And when I don't know how to act, I know how to not act so that people don't know that I don't know how to act. It's a fair amount of work and one of the reasons it is hard for me to be one-on-one with people I don't know well. It is much easier for me to hide in a small group.

I know how I present myself on the outside, but I also know that my inner world is very different. I recently came across this blog post about "hidden Aspies" and saw myself in it. I showed it to Alex and he saw me in it too. Sometimes the inside doesn't match the outside.

I am very grateful to have this new piece of information about myself. I don't consider my diagnosis to be an answer to all my life's problems, nor do I consider it to be a deficit. What I see it as is a new lens to see my behavior through.

I learned that SPD was responsible for me being able to hear that guy playing his stereo six houses down that no one else could hear, and that if I didn't want to have to leave my house completely, I would have to find a way to block it out. That knowledge helped me understand that it was because my brain was wired a certain way and not because I was a mean lady who didn't like anyone else to have fun.

I hope that my Asperger's diagnosis will do the same. I hope that it will let me continue to try to be the person I want to be while being able to adjust my expectations of what I can do. Understanding that my neurology is responsible for some of my difficulties might help me go easy on myself for having them. They are not character defects, they are a result of the way I am wired.

I am not a different person than I was just because I have a diagnosis. But maybe my perception of myself will be. It will be interesting to continue down this new path in my personal journey. As always, I hope you come along.

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This essay was previously published at www.stimeyland.com.

Monday, June 25, 2012

Business-NOS: A Standard of Professionalism

Zoe Gross 
illusionofcompetence.blogspot.com

There's a new girl in the office and her brain is weird.

One of the labels my weird brain has acquired is Pervasive Developmental Disorder Not Otherwise Specified -- PDD-NOS, for short. This is an outdated term for autism, but I still harbor fondness for it because it includes the word "pervasive." My disability is indeed pervasive, affecting all areas of my daily life -- including my work life, and including [my current] internship. Being Autistic changes the way I interact with the professional world, in ways that have been -- until now -- Not Otherwise Specified.

I actually really like working in a formal setting. I like my Senate staff ID badge. I like suits and pleats and zippers. I like taking the metro to work, I like leather shoes, I like taking my belt off and before I go through the metal detector and putting it on afterwards. I like going places where only staffers can go. I like feeling important, or at least feeling like I am a part of something that’s important.

I like the actual work that I do most of all, but due to some things in my office being classified I can’t really blog about that in great detail, so instead I’m going to discuss the aesthetic that surrounds the work that I do, which I believe is called professionalism. On the whole, I like professionalism. I am working to get professionalism to like me.

When I was in eighth grade I was told that I would not be respected in high school, in college, or in the workplace if I couldn’t sit up straight and look someone in the eye. I was told that I’d better master “attentive classroom posture” before I moved on to advanced literary analysis or interesting job placements. Since then, I have utterly failed to overcome my autism and associated hypotonia, repetitive behaviors, and non-standard communication -- through sheer force of will. I am an intern with the United States government, but I still do not display appropriate “classroom posture.”

As I explore my career options I am trying to figure out what my Autistic professionalism looks like. I’m working toward a new standard of professional behavior -- not a lax standard, but an accessible one. You’ve heard of business casual; this is business-NOS.

Business-NOS is when your stim toy matches your suit.

Business-NOS is elbows on the table, head in your hands.

Business-NOS is being floppy at work because you’re going to be floppy anyway and you may as well get some work done.

Business-NOS is flats only because you don’t have the gross motor skills to walk in heels. It’s trying heels anyway because you believe in the dignity of risk.

Business-NOS is networking using only scripts and echolalia.

Business-NOS is stimming and spinning in the Senate building, flapping in meetings, rocking in hearings, headphones everywhere.

Business-NOS is a standard of professionalism which does not require eye contact, stillness, or median abdominal strength. Business-NOS means putting your passion and energy into your work, not into trying to look normal. Business-NOS is knowing you do good work, and not buying into the lie that someone like you couldn’t possibly do the good work that you are doing.

This is what my professionalism looks like. How about you?

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A version of this essay was originally published at AAPD's Power Grid blog.

Friday, June 22, 2012

Busting Myths About Autistic Girls and Women

...One Unicorn at a Time.

Carol Greenburg
aspieadvocate-ascd.blogspot.com


We Unicorns seldom have a chance to gather in the magical wild lands of Manhattan, but thanks to a press pass arranged by Sharon daVanport, president of Autism Women's Network, I got to meet another of my species at a panel entitled Autistic and Female: They say That's Rare and so Many Other Things at the Disability Studies in Education conference at Hunter College, on May 27: Dr. Elizabeth "Ibby" Grace.

With a generous dollop of the whimsy autistic people are alleged to lack, Dr. Grace, an assistant Professor with the Diversity in Learning and Teaching Department and research methodologist at Louis University in Chicago, used her unicorn analogy to expose the myth behind the assumption that females with autism are rare. In fact, Dr. Grace maintains, autistic girls and women like her, and like me, are everywhere, but vastly under-identified and under-served. In a critique of theories, like Dr. Simon Baron-Cohen's suggesting "extreme male minds" and lack of empathy in autism, she noted both logistical and political underpinnings of the assumption of our rarity. She included in her overview of these theories comments on gender, class, race, and other biases that can block autistic girls and women from being recognized and accessing what they need.

It was in these comments that Dr. Grace's true unicorn nature began to shine through. She is rare, not so much as an autistic woman, or as a female scientist, but as a female autistic research methodologist, who undoubtedly has a unique perspective on the methodology behind the research of such widely discussed theories. Dr. Grace and her colleagues from Louis University, Dr. Linnea Rademaker and PhD candidate Jason C. Osmolak, were thoughtful and generous in their interaction with the audience about topics ranging from empowering parents to challenge educational norms to the importance of co-research in building trust between autistics and scientists studying our experiences. But oh, for a bit of unicorn or other magic to stop time and discuss at length Dr. Grace's unique view of how Dr. Baron-Cohen's information-gathering techniques may or may not have informed his findings!

Sometime soon, I hope Ibby Grace and I will meet again and chat over tea and cookies about that subject to our hearts content. You know, just standard girl-talk, one unicorn to another.

----

A version of this essay was previously published at www.autismwomensnetwork.com.

Wednesday, June 20, 2012

The Dangers of Misrepresentation

Lydia Brown
autistichoya.blogspot.com

Anders Behring Breivik, the Norwegian terrorist gunman who killed seventy-seven people in one day last summer, appeared in court yesterday morning as a psychiatrist declared that he likely "suffers" from Asperger syndrome and Tourette syndrome. One news article claimed that "Asperger's is a developmental disorder on the autistic spectrum that often is characterized by a lack of empathy."1 Another article paraphrased the psychiatrist and wrote that "Norwegian mass killer Anders Breivik has a rare, high-functioning form of Asperger's that has left him incapable of empathy or real friendship."2

Although even a peer-reviewed paper published as early as 19913 found no evidence for any correlation between violence and Asperger Syndrome -- further finding that the incidence of violent behavior in those with Asperger's is lower than the incidence in the total population -- the media has continually and repeatedly conflated being Autistic with a propensity toward violent or criminal behavior. The fallacious and damaging assumptions still widely held today that Autistics lack empathy, do not recognize that other people have minds, and are incapable of expressing emotions -- especially concern for others -- make it very easy for the uninformed journalist to hear "autism spectrum disorder" in reference to a criminal defendant and jump to the unfortunate conclusion that serial killers, murderers, rapists, and terrorists must be Autistic because of their apparent lack of empathy for others or any other traits that fit neatly onto a checklist of Stereotypes about Autistics.

Of course Autistic people are capable of committing violent crime, but it is in no way a reflection of their identity any more than when Jews, Blacks, or Muslims commit violent crimes. The neurology of an accused criminal defendant generally has little to do with the actual meat of the accusation and everything to do with ableist attitudes and legal defense strategies. When journalists write with obvious fascination and perverse curiosity about accused violent criminals, and when those same journalists attribute every known characteristic of the accused to autism, they are painting a very clear picture for the public:  Autistic people are dangerous. Autistic people are violent offenders waiting to happen. Autistic people are the psychopathic murderers of horror movies who are completely incapable of recognizing that other people have lives and minds, and who are therefore capable of committing heinous crimes that any good, sensible, non-disabled person could not possibly commit.

This troubling trend exists not merely in the mainstream contemporary media whenever a particularly egregious case of murder or rape comes to trial, but also in the scientifically questionable practice of posthumously diagnosing prominent historical figures as Autistic. A number of historical criminals, mass murderers, and serial killers have been speculated to have been Autistic for many of the same reasons given when journalists speculate about contemporary criminals, including reasons that lack any basis in reality, such as false stereotypes and misconceptions about Autistic people.

This concept is not new to autism nor is it new to the present age. All marginalized and underrepresented groups have been subjected to the cruel process of 'othering,' much of which is defined by the lengths to which a society will go to demarcate a marginalized group as an Other, not worthy of the same life, not worthy of the same rights as those who can fit into the privileged mainstream. Privilege is everywhere in journalism; it is a hallmark of the successful, well-read news media, and always has been. Most privilege is subtle and unrecognized by those who possess it, but its insidious influence taints journalistic objectivity with the cultural baggage of 'isms' that demonize and dehumanize.

Those who report the news have a duty to report the facts, to make every effort to educate themselves about the dangers of misrepresentation, and to represent the subjects of their writing fairly. Until our journalists learn that their language can have significant and severe repercussions for the lives of the people whom their language maligns and misrepresents, we will continue to face attitudinal barriers across all spheres of society that have been reinforced by the imagery and language used to describe us and construct perceptions of who we are and what our disability means. We will continue to suffer the consequences of dangerous words.

For as long as journalists conclude that every violent criminal must be "an Asperger's sufferer" or "autistic and incapable of empathy," we will be viewed through the lens of aberrations to the moral fabric of society, potential mass murderers and rapists waiting to be unleashed on an unsuspecting public. For as long as journalists conclude that every parent or caregiver who killed an Autistic family member was a loving, caring individual who "snapped" in the heat of the moment because of the stress of caring for a disabled person, we will be viewed as tragedies and burdens to society whose lives are expendable and subject to the caprice of those who are "heroic" enough to tackle the "burden" of taking care of a poor, helpless individual.

For as long as journalists unquestioningly accept untrue and dangerous stereotypes as truths, we will be seen as less than people, less than human, our lives not worth living or protecting, our very existence a barely tolerated abomination. And that is unacceptable.

_________________________________________
  1. "Expert says Norway gunman has Asperger's, Tourette's" ninemsn. 9 June 2012.
  2. "Mass killer Breivik may have rare forms of Aspergers and Tourette’s syndromes, says Norway's leading psychiatrist" Daily Mail. 8 June 2012.
  3. Ghaziuddin, M., Luke Tsai, and N. Ghaziuddin. "Brief Report: Violence in Asperger Syndrome, a Critique." Journal of Autism and Developmental Disorders 21.3 (1991): 349-54. Print.
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A version of this essay was previously published at autistichoya.blogspot.com

Monday, June 18, 2012

The Social Benefits of Inclusion

Meg Evans
megevans.com

It’s June again -- that time of year when we wake early to birdsong and a bright sunrise, our days are long and pleasant, and summer camps are getting underway for school-age children. For parents who have an autistic child, a major consideration in choosing a camp is how well it can meet the child’s needs. Many families choose an inclusive camp, where children with and without disabilities participate equally and often are paired as buddies to encourage them to spend time together and develop friendships. The games and activities in such programs generally are cooperative rather than competitive, so that all of the campers can have fun regardless of their skill levels, and no kids are left sitting on the sidelines. Inclusive camps often are promoted as having educational value for autistic children, in that they provide an opportunity to interact with non-autistic peers and develop social skills.

There’s no doubt a child can benefit from interacting with peers who have different backgrounds and abilities. I would say, however, that the social skills involved have a much broader scope than is often recognized. When children take part in a camp or other activity without exclusion or discrimination based on disability, they learn skills of vital importance in today’s multicultural world -- to appreciate one another’s diversity, to understand and accommodate differences, and to develop friendships based on genuine respect and equality.

When I was a child in the mid-1970s, my sister and I spent a week at a summer camp in the mountains. It wasn't a camp designed for inclusion of children with disabilities. Back in those days, such programs were few and far between. The main concern at that time was racial integration. Camp staff, in assigning tent mates, made sure to pair each black girl with a white girl. Many of the games and activities were chosen to promote social interaction among all of the campers. Charitable groups raised funds to provide camp scholarships for low-income minority children, in the belief that developing friendships with their white peers would help them to learn the ways of the mainstream culture and to become more productive citizens.

But as it turned out, that belief soon came to be seen as reflecting an outdated and patronizing attitude. Although there were some melting-pot effects, the benefit of racial integration wasn’t that minorities learned how to talk and act more like white people. Rather, mainstream society itself changed. Ethnic accents and cultural differences became part of the fabric of everyday life. We realized that it wasn't necessary, after all, for everyone to speak and socialize in exactly the same way before they could be productive citizens. Our collective concepts of Us and The Other shifted, such that more people could be welcome on the Us side of the line.

A similar shift is taking place with regard to autism and disability. Although our culture once took for granted that social exclusion was natural and inevitable for certain kinds of people, we’re now discovering that just as in other civil rights contexts, integration expands society’s comfort zone. When people of many different neurological types regularly interact as equals -- at camp, in school, and in the workplace -- they are seen as within the ordinary range of human variation, rather than as a strange and frightening Other.

So if you are a parent who has chosen an inclusive summer camp for your child this year, kudos to you. Valuable social skills are sure to be gained from the experience -- whether or not your child is autistic.

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A version of this essay was previously published at autisticadvocacy.org

Friday, June 15, 2012

For Autistic Teens Feeling Doomed or Broken

You are not alone. Many teens who receive an autism diagnosis feel broken, and suffer from pain of acceptance -- even to the point of suicidal thoughts. And the resources you need are not easy to find.

So we asked several adult autistics who were once autistic teens themselves: If you were in this headspace, how would you feel, what would you want people to say to you, what could possibly help? These are their replies.

Karla Fisher
I was angry the day I received my diagnosis. At first it just made me feel “broken.” People tried to tell me that I was the same person I was before. But those words did not make me feel better. Reaching “acceptance” of my label took me around eighteen months. There is very little written about this process that pertains to autistic people as our emotions do not neatly lineup in the way that Neurotypical people do (e.g., stages of grief).

As you go through this processing time, know you are not alone. Know that the prevalence for autism now is 1 in 88. That means almost anywhere you go, there will be others. We are here and we are a strong and capable people. We can easily be found online and perhaps even in your own community. Know that Neurotypical people (even the professional ones) make a lot of mistakes when trying to understand us. These misunderstandings are things that cause us to feel broken. Know that social skills are not the answers to a successful life. Seek Autistic Role Models and accept advice from those who support you as you are. 



Be patient with your own self during this time. It is okay to go through these feelings. It is okay to seek help. During this time you may go through a period of anger. You may wish that you could be fixed. But one day you will understand that autism is not a disease and that you do not need to be fixed. You will learn that advocacy empowers you to be the best person you can be. You will confidently accept your neurology and your place in the community as a whole and complete person.

Kassiane Sibley
I'd want to hear that I am not broken, and that those who think I am are so, so, so wrong. That anyone justifying poor treatment based on being different is a sack of shit (and yes, profanity did help). I would want to know about the autistic community. I would want to meet other autistics. I would want someone who mattered to me to tell me that all that BS in the media about autistics not having empathy, being burdens, being worse than getting struck by lightning is BS, and that the people promoting it are wrong,wrong,wrong.

When I was a teenager, autistics.org literally saved me. Essays by people like me, for people like me. People who were demonstrative about unquestioningly loving me. People who demonstratively loved me because of autism, not in spite of autism. Exposure to lots of autistic perspectives would have made me feel so much less alone.



Lydia Brown from her essay You Are Not a Burden
Your neurology is divergent from the accepted "norm" of human neurologies, but that's not a bad thing. You are okay the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations, or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members, or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won't face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another's life a little bit better, another's worries a little bit less daunting and frightening.

Emma Apple
Being a teenager is such a difficult time anyway when it comes to self identity. I struggled immensely as a teen due to social pressures, I disconnected from many of my friends and went on a journey of self discovery, through my art, books and specifically a search for religion. It both consumed me (which was a good thing, for me, at the time) and helped me to the other side of that difficult time, but it was also very personal, so I can't say "do that."

The very best thing right now is to exposure to the amazing autistic community of powerful, whole, strong, supportive self-advocates. Even if you come from a neurodiverse family, the support system often needs to be outside the family and the family needs to accept that and work towards getting it for you in every way possible.

Carol Greenburg
I would want people to tell me the truth that autism is a way of being, not a disease; and that while it can cause difficulties, it is also probably the wellspring of my greatest strengths. I would want people to point me toward The Autistic Self-Advocacy Network (ASAN), and other sites where I can "find my tribe" (if I want a tribe, that is), and I would tell myself as many times as necessary that anyone who defines me as sick or broken is running their own agenda, whether they know it or not. I would give myself constant permission to set my own priorities and walk away from anyone who tries to undermine my power.

Tarrant Figlio
I would want to hear that I am loved -- no matter who I am, how broken I am, how horrible I think everything is, and how much trouble I think I am to my family. And to make sure I understand that I don't need to know WHO I am or who I think I should be, to be loved. And I don't need to UNDERSTAND that love or the "whys."

Lynne Soraya
In my case, I basically had to find my own way through it. But when I think about that time in my life, when I think about what I felt, I felt profoundly alone ... and deeply confused as to what to think or believe about myself. So, I guess the first thing I'd say is that people need to LISTEN. 



The people around me would often try to talk me out of my feelings, which to me only further blocked me from working them out. To meet this need, I eventually turned to writing. A piece of paper didn't interrupt, or judge me for my feelings. It didn't try to tell me why my feelings were wrong. When you see someone so close to you in pain, there's the impulse to step in, to try to reason it away. To try to make it stop. Sometimes though, pain can't be reasoned away. It has to be heard, talked through, often with questions. 



It all goes back to what I've written about before -- asking "Why"? What is the root behind it? Is it what they've heard? From whom? Or is it something they thought about themselves? 



Another theme in my journal I saw was a troubling one -- the tendency to compare myself to others and find myself lacking. I discounted my strengths, and amplified my weaknesses. The word "stupid" appears a disturbing number of times, and I don't think I was even aware of how deeply entrenched my negative self-talk had become. So, emphasizing strengths, I think, is very important. Finding ways to help the person use those strengths in productive ways that help others; that they can then point to and say, "I did that." Provide them concrete evidence that their self-talk is invalid.

One thing I can say definitely NOT to do, is to make light, or think that you can cajole them into feeling differently. In practice, it feels manipulative.



Medication can help, but has to be treated very carefully; and with awareness of the ways people on the spectrum react to such drugs -- which can be idiosyncratic. That only comes with a professional who is clued in and aware. It should not be handled lightly, but presented with a teen in crisis there may be too quick a response in that area.



Another very important point that I think needs to be covered is understanding what in their current life is making them feel most anxious. A lot of the times that I've gotten depressed, has been when I found myself up against some of the difficulties of being on the spectrum, and couldn't figure out how to address them on my own. The feeling of helplessness that comes with feeling that you don't have the skills to handle a situation that is critical for success can really drive some dark thoughts. If you can find constructive ways to coach them in order to give them the skills to address those challenges, it can take a lot of the fear away, and reduce the hopelessness.


A lot of my depression dealt with my desire to connect with others, and my inability to achieve that due to lacking the tools. I took all the rejection personally, and felt that it made me unlovable. The hopelessness of feeling that I was unlovable, and not knowing how to "fix" that had a great deal to do with the despair. When I finally accepted I was on the spectrum, I had a very dark period of depression, because I thought that the fact that the traits that had caused me the trouble were neurological (and therefore wouldn't change), meant that I'd be stuck forever. Until then, I'd always held out the hope that there would be some miracle treatment or counseling technique that would "fix" me and people wouldn't reject me anymore, and I wouldn't have to be afraid anymore. I though Asperger's meant it was the end of the line. It was anything but. Understanding Asperger's actually provided me tools to fix a lot of the challenges I was facing. It wasn't the neurology, it was not understanding how to relate to other people, or how they related to me.

Corina Lynn Becker
Suicidal thoughts come from being in so much pain that you don't know how to make it stop, you just want it to STOP.

What you need is to realize is that 1) people care about you and 2) You are not alone. You are not alone being a suicidal autistic. You need to know that it's worth it to be alive. You need to be actively trying to get better. Until you do, other people can push all the doctors and books at you that they want, and you'll just push it all and them away for being nosy busybodies. 


Paula C. Durbin-Westby
I will say one thing I would have wanted as a teen and that would be for people to NOT talk about my "issues" all the time. It would have made me feel even more like I was "broken." I would want a careful balance of showing support and caring and encouragement without referring to "my problems" and also showing me examples of Autistic/Asperger's/whatever my official diagnosis is people who are just real people. So, in that case, real TEENS, and NOT real 60 year olds who are successes, or real 25 year olds who are successes, but Autistic teens who are living their lives the best they can. Some of whom can be found online. People who can sensibly, Autistically, lead teens in support groups that have a a careful balance of showing support and caring and encouragement AND talking about issues with each other, if they want to, with just listening and not having to TALK being a legitimate option.

----

If you are having suicidal thoughts: that is an emergency, and you need to get to a safe place. If you do not feel comfortable reaching out to the people in your life, resources such as Samaritans (samaritanshope.org) have hotlines for teens contemplating suicide for any reason. You are worth that call. You are not alone.

For context, this post evolved from the needs of a very real person, a teenage girl in crisis, who was recently diagnosed and needed support. The replies above are all from females because that is who responded to this call for help. Their responses were so thoughtful we decided to share their words and advice more widely. It is extremely critical that young men also have role models and resources, and we are actively seeking more male contributions for TPGA readers. 

Monday, June 11, 2012

IMFAR 2012: Androgens and Autism

Emily Willingham
www.emilywillinghamphd.com

Much of what I saw at IMFAR (self-selected, obviously) focused on assessing sex hormone differences or the presumed outcomes of such differences in autistic vs non-autistic populations. As the Father of the Extreme Male Brain Hypothesis that androgen levels relate to autism, Simon Baron-Cohen appeared as senior author on several posters in this subject area and also gave a talk on the same topic. While he is possibly best known in a negative light in autism circles for his tautological “autistic people do poorly on my empathy test ergo autistic people lack empathy” ideas, what I discuss below is not related to that, at all. It’s all about the steroid hormones during development in the womb, and I found it fascinating -- again, self selection as someone whose research focus was hormones during development. I’m not the only TGPA editor to have an interest in the link between steroid hormones and autism; editor Carol Greenburg has described her personal connection to it, as well.

If you’re not familiar with the androgen hypothesis of autism, a brief explainer is in order. Some endpoints of exposure to androgen in the womb appear to be more frequent among autistic people. In addition, there is a presumed bias to males in the autistic population (although I’ll continue to argue that autistic girls and women are likely to be overlooked far more often than autistic boys and men). Among these endpoints are traits like a “masculinized” digit ratio, in which the ring or fourth finger is longer than the index or second finger. The lower this ratio (longer ring finger), the more masculinized the hand in question is. The average of this ratio among women is near 0.97, and for men, it is 0.947. My own digit ratio is a whoppingly low 0.93 (yes, I have masculinized hands). Some researchers have found that digit ratios in autistic people are lower -- more masculinized -- than they are in non-autistic people, although results on that are mixed.


Source: Government Image
Given this and some other features related to androgen exposure in the womb, Baron-Cohen’s research group has focused on assessing exactly what that exposure might have been for people who are autistic compared to people who are not. It’s not easy to gain access, especially in retrospect, to conditions in the womb, but thanks to the Danes and their obsession with tracking their population’s health parameters, just such access is possible. They happen to maintain a biobank of amniotic fluid samples acquired from amniocentesis. Thanks to their tracking, they also know whether the children resulting from those pregnancies later were diagnosed with autism.

For this study, the researchers had 62 samples pregnancies that resulted in children later diagnosed with “classic” autism or Asperger syndrome and 231 samples from children who were later not diagnosed with anything, so who were presumably neurotypical. Using sensitive techniques, the investigators analyzed the samples for a series of hormones, several from the pathway that ultimately leads to production of testosterone. The androgen pathway starts with a hormone called progesterone. Thanks to the activity of enzymes, this pathway then steps through two other hormones before finally ending with production of testosterone. They used cortisol, the “stress hormone,” as a control hormone that’s made from progesterone via a different pathway.

Baron-Cohen’s team found higher concentrations of all four hormones in the androgen pathway among samples associated with autistic people compared to those associated with non-autistic people. They did not find differences in cortisol levels between the two groups -- leading me to wonder, does this point away from the “stress” hypothesis of autism? So many hypotheses, so little time.

In presenting these data, Baron-Cohen was careful to stress that replication would be needed to confirm the findings. Indeed, the design does have issues, likely constrained by how difficult it is to find amniotic fluid samples that are well stored and that can be linked to post-natal outcomes. One of the most glaring problems is that the samples came from pregnancies between 10 and 20 weeks of gestation. That’s a huge range that entails changes in hormone levels throughout that time period. That said, the lack of difference in cortisol levels between the groups does help to mitigate that limitation somewhat. The cortisol results lead, however, to my other concern, which is that cortisol can interact with the hormones in the androgen pathway and vice versa, so why wouldn’t cortisol differ between the groups?

The hormone party didn’t end with Baron-Cohen, however. A Swedish group led by S. Bejerot presented a poster asserting that “many adults with ASD appear androgynous, youngish for their age, and ambiguous in sexual preferences.” I didn’t get the references from this poster and cannot say what they’ve used to confirm this information. The paper appears to be published now in the British Journal of Psychiatry but lies behind a paywall.

At any rate, using this presumed androgyny as a springboard, they evaluated testosterone levels in autistic and non-autistic adults, men and women. For endpoints of masculinization, the authors measured digit ratios and head/wrist/chest/waist/hip circumferences, and recorded each participant reading a short story. Then they tested for testosterone levels and used independent observers to rate participant images and voices in terms of stereotypical sex-hormone-based characteristics, such as a low voice (androgenized) or eyes far apart (estrogenized).

They found that autistic women had bigger heads, less feminine facial features, and higher levels of testosterone compared to non-autistic women. Autistic men, on the other hand, were assessed as having less masculine body characteristics and voices, and less masculine digit ratios, even though their testosterone levels didn’t differ from levels in the non-autistic men. Finally, the subjective measure of “androgynous facial features” correlated “strongly and positively” with autistic traits in both sexes. The authors conclude that autism may be a “gender defiant disorder,” which makes it sounds strangely rebellious and slightly dangerous, like one of the Wild Bunch or James Dean.

These findings might seem like a disconnect from what Baron-Cohen’s group reported, but what happens in the womb doesn’t necessarily parallel what happens in the child or adult after birth. All of this is hazy and interesting and hormonal, but it doesn’t nail down anything unequivocally.

Speaking of the womb, I come around now to tying this all up, not with a neat little bow but into a shabby, incoherent package of little hints for where to look next. You may recall the recent, famous twin study that found a good-sized contribution of the womb environment to autism. A lot of people who think “environment” means “toxins” took that as evidence that toxins cause autism. But the “environment” in genetics means a lot of other things, including the natural “hormonal milieu” that results from maternal and fetal hormone production. And that takes me to my last presentation from IMFAR that I’d like to discuss as part of this “parade of hormones” entry about the conference.

It’s a small study, one that looked at identical twins who either shared a chorionic sac during development or who did not. The implication is that a shared sac meant a highly shared environment, while two separate sacs suggest less sharing of environmental inputs. This study, by L. Meyer and H.H. Goldsmith from the University of Wisconsin, Madison, evaluated 54 pairs of identical twins. At least one member of each pair was autistic. They found that the identical twins were 69% concordant (compared to 23% for fraternal twins), and that sharing a chorionic sac didn’t make it more or less likely that both twins would be autistic. They concluded that non-shared environmental factors appeared to have no influence on autism. In other words, whatever the twins experienced in separate sacs -- presumably including hormonal interaction between mother and child -- didn’t differ from what they experienced when they shared a sac.

Altogether, these findings make hormones and the womb environment an interesting place to look if your thing is genetics, causes of autism, and “where did I come from, why am I like this?” Nothing here is definitive. It’s just suggestive. But as I consider my own low digit ratio, androgynous face, low voice, and large head, I can’t help but relate and feel that information like this can increase at least a little what I know about myself.

Friday, June 8, 2012

Sensory Issues vs. Behaviors: On the Recent AAP Policy Statement

Brenda Rothman
mamabegood.blogspot.com

Last week, the American Academy of Pediatrics (AAP) released a policy statement (1) on sensory integration therapies. The AAP recommended that pediatricians should not diagnose sensory processing disorder as a stand-alone diagnosis, but should refer children for an evaluation for other possibilities, like autism, ADHD, motor, or anxiety disorders. AAP also advised pediatricians to inform parents of the limited amount of research for sensory therapy and to help them set up a program to determine its effectiveness.

Stating that we should monitor and judge the effectiveness of sensory therapy seems straight-forward and logical. However, the pediatricians' statements about the policy reveal an underlying problem. Their argument that sensory issues may actually be behavioral is not untenable. But it also has the potential to cause harm. Given the discomfort, the related issues like emotions, relationships, brain science, parenting, and the risks of treating sensory issues as behavioral, we need more from our doctors. We need common-sense, evidence-based "monitor-and-evaluate" advice, but also need to consider the whole context. Consider adult autistics as a valid resource. Address the pain, emotions, and related problems of sensory issues, not just behaviors. Evaluate the whole person. Think beyond "we can't tell for sure what it is" to the science we do know about the amygdala and brain chemicals. Acknowledge research about sensory overload and genetic hard-wiring in the brain (2).

My son Jack, diagnosed with autism at 3 1/2, has received sensory-based therapy for most of his life. Jack was born seriously ill and spent his first six weeks in the NICU. In week five, he was moved to a bassinet by the NICU door. Every time the door banged, he startled awake. How I hated that door.

Today, Jack's system reacts strongly to certain sounds (zipping, clapping, for example), visuals (cloth flapping in the wind, for one), and anything wet or sticky on his hands. He also has difficulty with balance and with figuring out where his body is compared to objects outside his body. He experiences anxiety from trying to manage his environment of constant sensory input, and as a result often feels overwhelmed and exhausted. Sensory approaches like swinging are a huge source of relief for him. Other sensory approaches seem to help a little, like weighted blankets and jumping. But I couldn't see results from spinning or listening therapy, so we didn't keep these in our repertoire. So, in my experience it seems logical that parents should judge the effectiveness of sensory therapy for themselves since the current studies are insufficient.

But then a HealthDay report (3) suggested that sensory issues were, in fact, behavioral problems:
No one disputes that children with conditions such as autism can have abnormalities in their responses to sensory stimuli, including sight, taste, touch and sound. For example, autistic children may have aversions to loud noises, to certain food textures or to being touched unexpectedly, Zimmer said.

But that doesn't necessarily mean the problem is with their brain pathways for processing sensory information, as the term "sensory processing disorder" implies.

Instead, some other issue could underlie their reactions to stimuli, such as a behavioral issue, said Dr. Susan Hyman, chair of the American Academy of Pediatrics subcommittee on autism and an associate professor of pediatrics at University of Rochester Medical Center, in Rochester, N.Y.
When asked by phone about this issue, Dr. Susan Hyman explained her position. While sensory issues exist and are biologically based, she says, we cannot disentangle sensory from behavior. While a child's reaction to a fire alarm truly does have a biological basis, anxiety builds up around the event, so we have to teach them ways to soothe their anxiety, such as earplugs. Since we don't have evidence that an sensory solution like auditory integration training works, we have to have a complex treatment plan, and the main component should be behavior therapy.

As another example, Dr Hyman continued, Pica, or eating non-food items, may be a result of sensory-seeking or it might also be a developmental delay, since mouthing is a way that younger children explore the world. However, she added, it might also be a perseveration as a result of autism. She suggested, we could give the child an appropriate object to chew. (Maybe the line between sensory and behavioral has blurred, but ear plugs and chewy toys are standard sensory tools.)

Pressing forward. When Dr. Hyman noted that the sensory/behavior issue hasn't been resolved yet by neurobiology, I asked her whether we've talked to autistic adults about their experiences. She noted that some case studies have been done with adults and that some autistics, like Temple Grandin and Donna Williams, have reported their sensory experiences, so it is important to look at the biological basis.

Still, her conclusion remains the same. Though sensory issues are real, they might not continue after the original sensory experience, so subsequent experiences may be behavioral. Since we can't tell sensory experiences from behavioral presentations, the treatment may include sensory therapy, but the main treatment should be behavioral.

Dr. Hyman was quick to assure me that "behavioral" does not mean "volitional," but the general understanding of the first term is fuzzier. People often use "behavioral" to mean "misbehavior." Applied behavior analysis uses rewards and consequences to identify and change problematic behaviors, so, on some level, "behaviors" must involve choice, like choosing to avoid a negative or to get a positive.

Even without resolving the willfulness problem, though, the AAP's sensory/behavioral position still raises questions. We have to ask about 1) the physical pain behind sensory issues, 2) the interrelated issues, 3) the risks of treating sensory as behavioral.

1. The Physical Pain of Sensory Issue

I am not autistic, but I have a highly active alarm system. I startle more often than other people. Loud noises or unexpected events, like seeing someone I didn't expect, startle me. It's a physical reaction. I jump, my heart pounds, my breathing stops. It isn't an anxiety problem around those particular issues. I don't avoid loud noises or unexpected events. I don't think about them any more than other people. I don't think about them at all. I just get startled.

Psychologist Jerome Kagan (4) would say I was born with a "high-reactive temperament" due to an inherited, genetically-wired, low-threshold, highly sensitive amygdala (5), the part of the brain and sympathetic nervous system that takes sensory input in and processes emotions out. The amygdala pulls in sensory information and figures out the basic emotional responses: fight, flight, or freeze. We can't change our amygdalas. They are inherited and hard-wired. We can learn tools to cope with our individual amygdalas, but it causes unnecessary stress to suggest it can change. That startle I get from loud noises or unexpected events? It is a physical jolt. My body flinches and my heart jumps. It's painful.

My son, who is autistic, has a high-reactive amygdala, too. He startles easily and he has a high-reactive sensory processing system. For example, when Jack eats or has his teeth brushed, he manages sensations that are painful, strong, and unpredictable. He describes the sensations as worse than a headache but not as bad as falling down on his knees. So, it's more than a dull ache and less than a sharp pain. It's painful.

Lynne Soraya, a writer with Asperger's, describes being hit by a car when she was nineteen while crossing a busy street. She was already experiencing overload from an earlier argument as she waited for the walk signal and stepped into the crosswalk. Unable to process her environment, she didn't see a car turning into her path until it was too late. The car hit her, causing permanent hearing damage. Lynne asks, "What is the behavior that needed to be managed there?" The problem is not crosswalk safety. Lynne followed all the rules; the driver did not. The problem with a behavioral approach is that we ignore the context of the individual and his sensory issues. As Lynne says, "just ignoring the pain, discomfort, and danger that can come with sensory integration issues is simply not acceptable." We have to consider the issue of pain behind sensory issues. To do otherwise, Lynne notes, "is inhumane."

2. The Interrelated Issues

Not only does the amygdala process sensory input, it also processes emotions. As Lynne puts it, "Emotional upset and sensory integration issues, for me, go hand in hand -- the energy it takes to deal with one will vastly affect my ability to manage the other." Because the amygdala is busy attaching emotional meaning to the sensory input it receives, it makes sense that once Lynne had depleted her emotional energy, she no longer had the energy to process the visual signal of a car coming into her path.

But there's also the emotions a person feels upon experiencing a sensory overload. The fear and helplessness (6) a child feels during a sensory overload is genuine. We need our pediatricians to consider the whole child, not just sensory or behavioral, but the stress and emotions that come with it. When we talk about a child's sensory distress, we should hear doctors validating that distress and offering ways to help our child. Not just to be empathetic, but to help us understand the brain's complex relationship between emotions and sensory processing. For example, when we provide safety, comfort, and reassurance, our calmness releases helpful chemicals (7), like oxytocin (8) and opioids, in our own brains and our child's, calming the overactive amygdala. If we ignore or walk away from a child in distress, as some parenting techniques may suggest, those chemicals are not released. The same is true if we treat the distress as a discipline issue.

It's not merely an "either sensory or behavioral" choice as the AAP position would suggest. As parent Alysia Butler reports about her son's experience, "his inability to process his world is his biggest issue" and drives his other challenges, like "social skills issues, his hyper-focus, his sleep troubles." His sensory issues are intertwined with other aspects of life.

Sensory issues, emotions, brain science, relationships, parenting - these things don't happen in a vacuum. They are interrelated, affecting and dependent on one another.

3. The Risks

Let's consider this: What if it is sensory and not behavioral? What if autistics are telling us that and we're just not listening? What will constitute proof? How would you feel if someone was trying to modify your behaviors without addressing your emotions or pain?  What about the exhaustion when your sensory processing is constantly working harder?

Dr. Hyman believes that sensory-based therapies have more risk. She equates sensory therapies to a hammer and nails. "If all you see are nails, you'll always use a hammer," she explains. In other words, if all you see is sensory, you'll always use sensory therapies, and they're not always effective. So the downside to sensory therapy is that it isn't always effective, so we might be wasting time, energy, and money.

What's the risk of seeing only behavioral nails and using a behavioral hammer? From Matt Young, an autistic adult: "A reductionist approach where everything comes down to behavior fundamentally dehumanizes us in a profound way." It reduces an individual, with his own sensory, emotional, and contextual experiences to a set of behaviors. It means we risk not believing his experiences. It means we risk dismissing his emotions.

One tool that a sensory-based approach gives us is the opportunity to take the person's or child's unique perspective. It connects us to them, encouraging us to see things from their individual viewpoint. That connection encourages compassion, and a compassionate response allows a contextual, creative approach to the whole person. Sensory-based therapy means we don't ignore or walk away from sensory stress. It encourages us to acknowledge the genuine distress.

The AAP's position, on the other hand, questions that distress. It says we cannot believe an autistic's experiences. It means we might lose faith in the autistic individual, in our child, and he might lose faith that anyone would believe or understand him.

And that's a loss we can't risk. 

We know pediatricians are overwhelmed (9) by lack of information about autism and autism therapies. We encourage the AAP to partner with adult autistics, parents, and autism professionals, like occupational therapists, to consider the whole child, not just individual therapies. The pain, emotions, parenting issues, and risks of treating sensory as behavioral are too real. We need more from our the AAP and our pediatricians.

----

Sources:

Phone interview with Dr. Susan Hyman, May 30, 2012.
Email interview with Alysia Krasnow, May 31, 2012.
Email interview with Lynne Soraya, June 2, 2012.
Email interview with Matt Young, June 2, 2012.

Footnotes:

  1. http://pediatrics.aappublications.org/content/early/2012/05/23/peds.2012-0876.full.pdf+htm
  2. http://www.sciencedaily.com/releases/2012/01/120131175627.htm
  3. http://consumer.healthday.com/Article.asp?AID=665121
  4. http://necsi.edu/faculty/kagan.html
  5. http://en.wikipedia.org/wiki/Amygdala
  6. http://www.deepdyve.com/lp/psycarticles-reg/effects-of-accurate-expectations-about-sensations-on-the-sensory-and-s8gvC9lBCg
  7. http://www.mendeley.com/research/brain-substrates-of-infantmother-attachment-contributions-of-opioids-oxytocin-and-norepinephrine/
  8. http://www.sciencedaily.com/releases/2012/05/120519213236.htm
  9. http://www.ncbi.nlm.nih.gov/pubmed/19255027

Wednesday, June 6, 2012

Dangerous Interventions: MMS and Autism

Emily Willingham
biologyfiles.fieldofscience.com

Last week we became aware that a protocol for "treating" autism, called MMS (Miracle Mineral Solution), was presented at the most recent AutismOne conference. The convoluted science behind this "solution" would be enough to turn many people off, but the actual "treatment" is so abhorrent we wanted to make sure that people know the background of MMS. Warning: the links in this post may be a trigger because many of them point to communities that equate autism with damaged goods. -JBM

AutismOne has a history of providing a platform for dubious “practioners” to showcase potentially harmful wares to a willing audience. The peddlers at this conference are no different from any other pseudoscience-pusher, including the fact that they are more than willing to take advantage of the pop culture fascination with autism, and induce a gullible audience to part ways with their money, regardless of how ineffectual, or dangerous, their products may be.

The autism community is a vulnerable one for many reasons, but none are more vulnerable than the autistic children on whom parents experiment with these “treatments.” We’ve seen extreme examples before, including chelation, chemical castration, and hyperbaric oxygen treatments, all featured at AutismOne. All unproven as therapies for autism and potentially damaging, even deadly. It’s certainly a cognitive disconnect to blame autism on safety-tested medical interventions, that are enormously effective and have no scientific link to autism, but then to turn to flatly dangerous and even deadly interventions that have undergone no testing of any kind--and experiment with them in children.

With the appearance of “chemical castration” or fatal chelation, one would think that we’ve already hit the nadir of experimental “curatives” for autism, but there’s yet another, lower point. Now we have a cadre of three people who seem to have determined that autism is The Next Big Thing for their “curative” of choice, a solution that is essentially industrial-strength bleach. This year’s AutismOne conference featured a presenter who told the audience that she has directed parents to use bleach in the bodies of autistic children.

Before you read on, I have to warn you that what I describe here is child abuse and tantamount to torture of autistic children. It is harrowing and horrifying.

Before you read further or when you’ve finished reading, I encourage you to please click over and sign this Change.org petition that TPGA co-editor and co-founder Jennifer Byde Myers and I started, asking the FDA to issue cease-and-desist orders against those shilling this bleach solution as an “autism cure” in the United States. We also have included the Federal Trade Commission in the petition, as they have some jurisdiction over trans-border sales, and at least one of their group resides in Mexico, where she peddles to local families.

First, a brief history: A man named Jim Humble seems to have realized that if you cynically and wantonly make the right false promises, you can sell anything to almost anyone, especially when a hot-button disorder or disease is involved. So, he decided that he would sell a bleach solution to people to “treat” a host of unrelated conditions, from malaria to flu, and now, autism. He’s reasonably effective as a salesman, but he didn’t stop there. Humble actually has a church (“non-religious” !), all centered around shilling bleach solution as a cure-all the world over. His sweep is international, and his acolytes who go forth and share the Word of Humble appear to number in the hundreds.

The church--dubbed Genesis 2--focuses on proselytizing use of Humble’s bleach solution, initially called Miracle Mineral Solution but now dubbed MMS. The Genesis 2 church “ordains” people at different levels of the church hierarchy, including as “ministers of health.” And it seems that in the last year or so, Humble has joined forces with two other people in this “church” to target the autism community, hawking this bleach solution as a cure for autism. Joining Archbishop Humble (I’m not making that up) in his goal to bleach the insides and outsides of autistic children everywhere are Bishop Kerri Rivera (a DAN! adherent, as well) and sidekick the Reverend Doctor Janet Henshaw-Hedlund, featured here in a video with Humble. The three have held a workshop in Puerto Vallarta, Mexico where the threesome provide direction to “treat” autistic children by having them ingest bleach to the point of vomiting and diarrhea, if not worse.

You can read about the claims they make about their solution at Science-Based Medicine, where Orac has taken apart a presentation that Bishop Rivera herself made at AutismOne 2012. Introduced by a woman wearing an “MMS Rocks!” t-shirt, Rivera gave her misleading, anti-scientific, bleach-shilling talk (video here; viewer beware) to what appeared to be a room that contained not a single dissenter, not one person who stood up to ask, “Really? You’re recommending that we use a bleach solution as an enema in autistic children? As a bath? As an oral ‘treatment’?”

You read that correctly. Bleach enemas to cure autism. The protocols the members of this trio recommend for the MMS treatment are just… traumatizing even to read. One calls for a “treatment” every two hours for 72 hours, “every possible weekend.” Humble writes of overcoming the “nausea barrier” to up the dosage. Evidently, a “therapy” that induces nausea and vomiting and fever and diarrhea is a “good” thing. And if you make up a “baby bottle” of it, that makes it seem even more innocuous--or insidious, depending on your perspective.

Any child who is subjected to this abusive and torturous treatment would find it more than insidious. Orac quotes a parent who writes about her non-speaking autistic teen that the boy can’t tell her how he feels as she doses him with the bleach solution. He vomits and has diarrhea “all day”; she writes that he generally has a “sensitive” gut. Another mother set up a blog to describe trying MMS on both her autistic son and herself, a sufferer of rheumatoid arthritis. It’s heartbreaking but also enraging to read her posts as they reveal more than she seems to see: Her son develops a sudden extreme fear of the bathtub, and she can’t seem to understand why, even though six days earlier, she wrote that they were about to try an “MMS bath” (i.e., a bleach solution bath; PDF of Humble’s protocol for that here) on him. Then suddenly, the blog ends with, “I cannot continue this blog. Sorry.” 

Yet even as that parent presumably ended her experimentation on herself and her child, others crow about MMS and its “curative” effects for autism and claim “miracles.” The reach of the marketing of MMS has been extremely effective in a very short amount of time in disseminating their claims through the autism community. But nowhere have they been as effective as they were in scoring a presentation at AutismOne, where they had an in-person audience and an online audience able to watch their live-streamed presentation.   

AutismOne, you should immediately take steps to publicly renounce your association with these people, particularly Kerri Rivera, and the use of MMS as a therapy for autism. Not to do so is tacit endorsement of child abuse and experimentation on children that no society should tolerate. You have allowed a cult that exists solely to shill bleach solution to vulnerable people to hawk their wares and exploit you and your conference attendees for their own ends. Do the right thing, do it publicly, and do it now.

In the meantime, we are working to make the FDA aware of all US-based sellers of MMS and associated claims, asking them to issue cease-and-desists to these vendors. Sellers are particularly careful -- or they try to be -- to claim that they’re shilling MMS as a water purifier (a legitimate use of the solution). However, they’ve made the mistake of mentioning Jim Humble (e.g., “Jim Humble approved!” and “health enhancements” at Amazon.com) along with their otherwise careful wording. It’s the virtual equivalent of putting MMS solution on display next to Jim Humble’s books about MMS as a “cure-all,” so that the latter constitutes labeling of the former. Humble is aware of the FDA and its power and that the FDA is aware of Humble and MMS.

So, help us urge the FDA to do more here than the previous 2010 consumer warnings that they issued about MMS, before these snake-oil-peddling charlatans turned their greedy eyes toward the autism community. Why? Because now, these people have moved beyond targeting consenting adults. They’ve moved into the realm of child abuse and child endangerment, and that demands our involvement. Please sign the petition asking the FDA to issue cease-and-desists to people selling this product as “Jim Humble approved.” Please help make it extremely difficult for parents to acquire and use this product on their children.

Tuesday, June 5, 2012

How the DSM-5 Draft Autism Criteria Will Affect Law, Policy and Service Provision

The Autistic Self-Advocacy Network's Ari Ne'eman and Steven Kapp have released a policy brief: What Are the Stakes? An Analysis of the Impact of the DSM-5 Draft Autism Criteria on Law, Policy and Service Provision [PDF].

The full PDF brief can be found at bit.ly/DSM-5, and "...summarizes the legal and policy details of the program under discussion and attempts to identify the likely implications of the DSM-5’s outlined changes in the criteria for Autism Spectrum Disorder on eligibility, benefits, and access to services and legal rights."

The legal and policy areas in question are described, then followed by analyses of the proposed DSM-5 changes' implications:

  • Individuals with Disabilities Education Act (eligibility criteria)
  • Impact of DSM-5 Shifts on Students with Disabilities Receiving Services Under IDEA
  • ADA/504 Accommodations (guaranteeing non-discrimination re: disability in schools and in the workplace)
  • Impact of DSM-5 Shifts on ADA/504 Protections
  • Medicaid-Funded Developmental Disability Services
  • Impact of the DSM-5 on Individuals Receiving Medicaid-financed I/DD [Intellectually /Developmentally Disabled] Services
  • Supplemental Security Income and Social Security Disability Insurance (income support)
  • Impact of DSM-5 Shifts on SSI/SSDI Applicants and Medicaid Buy In Program Participants
Ne'eman and Kapp outline why you should be concerned [emphases below added -SR]:
Our analysis suggests that DSM-5’s proposed shifts to the definition of the autism spectrum will have both positive and negative implications for children and adults seeking to access services, supports and accommodations. 
With respect to IDEA-mandated special education and related services, ID/DD service provision financed through the Medicaid HCBS waiver program, and possibly the income support and public health insurance offered through the SSI and SSDI programs, the DSM-5’s proposed unification of the major ASD diagnoses into a single diagnosis has the potential to improve access to services. 
The shift of individuals off the autism spectrum into other non-ASD diagnoses, such as the new Social Communication Disorder, or to no diagnosis at all, will likely diminish access to IDEA-mandated services, ADA/504 legal protections, the SSI and SSDI programs and their associated public health insurance, and Medicaid Home and Community Based Services waiver services. These concerns are serious and would have practical consequences to children and adults on the autism spectrum, their families and the professionals who serve them. 
At the same time, it is our belief that the potential problems we have outlined above are by no means inevitable and can be addressed through changes that nonetheless retain the basic structure proposed for the DSM-5. 
We hope readers will submit constructive comments to the DSM-5 working group. Instructions for doing so can be found at AutisticAdvocacy.org's ASAN Talking Points on DSM-5. Comments will be accepted through June 15, 2012. 

Ne'eman and Kapp also noted the following, so stay tuned to AutisticAdvocacy.org for more autism-specific DSM-5 information, recommendations, and action items:
This brief is the first of two focusing on the DSM-5. Our second brief will outline ASAN’s recommendations regarding the draft criteria and proposed severity scale.

Monday, June 4, 2012

Fifteen Ways to Accept Autism Every Day

Emma Apple
emmaapple.com

The month of Autism Awareness and Acceptance -- April -- is more than a month past, but the campaigns continue. There's Autism Acceptance Year, all those Facebook "Every Day is Autism Awareness Day at Our House" images that go around (which I love!), and there's the ongoing efforts of self-advocates, parents, and allies who want you to be aware and -- more importantly -- accepting and understanding of what autism is and what it means for autistic individuals and their families.
So, aside from Blue Hijab Day, here's my contribution this year for Autism Acceptance.

Five Ways to Accept Autistic Kids
  1. Be Patient. This really goes for kids of any variety. They have as much right as you to be out in the world and to take part fully in a world that will soon be theirs. Kids in general -- but often especially kids with special needs -- are learning appropriate social behavior, they might not be quiet in the library (but they might be loudly loving books, and who can be annoyed at that?), they might not sit still next to you on the plane, they might cry for that chocolate bar in the supermarket checkout line (chances are, you want it that much too, but have learned to want it in a more socially appropriate manner). No doubt we've all behaved badly at one point (or many) in our lives, and if we're lucky, the adults around us were patient and gentle when we needed them to be, even when we weren't.
  2. Ask and Listen. My son talks. For that we are blessed and have all worked hard. What he says is usually full of meaning though sometimes only he knows it -- and of fascinating perspective. My son also talks very, very slowly, often repeats parts of sentences, and talks in a quiet monotone with little facial expression, little gesture, and little eye contact. If you stop, and you kneel, and you listen to him, give him time, let him speak he does have something to say. He's taught me so much and I've learned to believe him -- even if I think a pink cement truck sounds wild and imaginary, he did see it, and it happens to live at a construction vehicle lot just down the road.
  3. Talk About Their Interests. A quote from Temple Grandin recently got me thinking about kids and their own awareness of their autism -- are some of us inadvertently creating too much focus on it? I think while it's important we adults are understanding, these kids are far, far more than the sum of their diagnosis, deficits, and neurological differences. I think that's the point of 'acceptance' over 'awareness' that many are campaigning for, to accept is to truly say something is OK and to allow it to be a part of your world and your life -- it doesn't need special focus all the time, it just is. Many kids on the spectrum have fascinating interests or interests that fascinate them, these can be things that give them balance or calm, or things that they are experts on that could lead to amazing careers if nurtured correctly. Ask my daughter about condors and you'll be in for a long -- and very informative -- conversation, and I have no doubt you'll enjoy it just as much as she does. Join my son while he's raining the hand fulls of little stones at the park; it's quite relaxing and you'll have an instant bond that you wouldn't get just by speaking to him.
  4. Communicate With Them and Accept Their Communication With You. Most kids on the spectrum struggle with communication in some way, whether significantly or almost unnoticeably. If a child is non-speaking and has no way of communicating, you can look at their behavior, what they are doing, what they seem to enjoy -- and communicate that way, or simply be comfortable in their presence without conventional communication; that alone is a big step for many. Admittedly, I don't have a lot of experience with non-speaking kids but I do know that behavior is communication -- and that accepting them and being comfortable in their presence is a form of communication in and of itself that can be liberating for both of you. Kids who can speak also have communication differences, so with them, we just have to understand we aren't going to get some parts of stereotypical communication (i.e., eye contact in many cases), and expect to interpret language differently. See point 2.
  5. Love Them. Because what do kids need more than love and acceptance? (Aside from oxygen, food, water and shelter, but you know what I mean.)
Five Ways to Accept Autistic Adults
  1. Show Some Respect. Whether someone is obviously disabled or not, whether you're struggling to communicate or not, every person deserves to be treated with respect and dignity. I don't think I need to elaborate on that, but I do think we all need to give it some serious thought.
  2. Communicate. Whether someone is using an iPad, a computer, texting, typing, or speaking when they communicate with you: listen to them, ask them questions, and listen to their answers. Autistic individuals are the authority on their own experiences and everyone else has an immense amount to learn from them. Many adults on the spectrum are working hard to share their perspectives with others and provide the necessary insights to accept autism as a part of our world -- whether it's Carly's new book, Temple Grandin's biopic, or the witty cartoons of Dude, I'm an Aspie!
  3. Look Inwards. You know that weird thing you do when no one's looking? The way you interrupt people sometimes? The way you bob your leg or tap your fingers on the desk when you're nervous or bored? We all engage in self-stimulating or -regulatory behavior. Autistic behaviors can just be a bit more noticeable or a bit more stereotyped or a bit more intense. We also all make the occasional (or regular) social faux pas and some of us are downright obnoxious. Everyone break the unspoken social rules sometimes.
  4. "Make Excuses." As Muslims, this is an important part of my family's every day life (or should be). Some complain that people on the spectrum can be rude or obnoxious, but if we know someone is autistic -- or even if we don't -- we should "make excuses" for their actions or behaviors before dismissing them. Someone might seem obnoxious; as John Elder Robison describes in his book Be Different, they might switch the channel without taking any notice of other people in the room. But did they do so out of malicious intent? Or were they genuinely not aware the others in the room were watching something or were even there?
  5. Lose The Pity. To pity is to feel sorry for someone, to assume their misfortune and feel superior in your fortune. You might pity someone who has lost a relative, who has been diagnosed with cancer, whose home was destroyed in a hurricane -- these are things they are powerless to control. But to pity someone because their mind or body developed differently than yours is to consider them powerless, to assume they suffer for it rather than just get on and make use or make do with the abilities, the strengths, and the power that they do have. To pity is counter to acceptance -- just don't do it.
Five Ways to Accept Parents of Autistic People
  1. Stop Using Devastating Language. It's dangerous. We can control how we respond and how we communicate with parents, and the media holds much of the responsibility here. Don't pity, don't say you're sorry, because parents are taking despairing attitudes to heart and children have been killed because of them! [Ed. note: to quote self-advocate Lydia Brown, "Don't let your children grow up in a world where society devalues their lives."]
  2. Be There. This is one sure way you can help. If parents are stressed or fatigued, listen to what they have to say. Offer to bring some meals, do the dishes, give respite. And see point 1.
  3. Don't Judge or "Know Better." "I heard about this diet/theory/study/cure," "You know Jenny McCarthy..." "I'm sure they'll grow out of it," "You definitely have to be more consistent," -- You mean well, we get it, it's just that we've heard it all before, it's just that it's based on media hype, it's just that it's rooted in parent blame. I've learned to ask questions instead of offering advice or opinion on something I don't understand: "What sorts of therapies are you looking at?" "I'd definitely bring that up to the doctor/teacher/therapist, just to see what they think. Keep me posted!" or just simply "I wish I had some helpful advice for you. Let me know if you want to talk, I have a good listening ear."
  4. Invite Them. That party that you know will be overwhelming for their special needs kid? Invite them anyway. Really want them to come, ask early in the planning stages and work with the parents -- and the child when possible -- to figure out what can be done to make the party more accessible, more sensory friendly, safer, gentler, more welcoming and accepting. It might be hard for you to plan around a child's needs you don't fully understand, but it will mean a lot to a family who really doesn't get to go to many Eid parties (for example).
  5. Give Them a Break. Come for coffee and be prepared to wipe up if it's spilled. Go for a walk and be prepared to grab a child who may run past you into the road. Have a chat and be prepared to talk around loud stimming. Go shopping with them, because four hands are better than two. Accept that your friend/family member has an autistic child, accept the autism, get comfortable with it and enjoy the company of it -- it definitely makes life interesting!