Friday, May 24, 2013

The Empathy Question: Theory of Mind, Culture, and Understanding

Nicole Nicholsen
womanwithaspergers.wordpress.com

Rachel Cohen-Rottenberg’s Autism and Empathy website started me thinking about the whole empathy question in regards to autistic people -- again. In my first post about autistics and empathy, I mentioned Theory of Mind issues as one of the possible reasons why there is a perception that autistic people lack empathy. With what I had read about Theory of Mind at the time, I’m now reexamining the concept and wondering if I had gotten it slightly wrong, especially in light of the recent challenges that other autistic writers have made to the prevailing ideas about autistics and Theory of Mind.
The Sally-Anne Test
The Sally-Anne Test

The prevailing idea about autistics and Theory of Mind goes something like this: having good Theory of Mind means that a person is able to determine the contents of both one’s own mind and the minds of others; conversely, autistic people are unable to determine or reflect on the contents of other people’s minds. In short, the idea is that autistic people are unable to understand other people’s minds and know that others think differently than they do. This idea was put forth in Simon Baron-Cohen’s 2001 paper on the subject, and I’m sorry that I didn’t unpack it a little further before writing my first post about empathy and autistics. Now that I have, I again have to say: what a load of bullshit.

Cracks in the Edifice

To me, possessing a Theory of Mind means that one is able to get inside someone else’s head -- and dare I say, heart -- and understand what he or she might be thinking or feeling. This practice can be evident in many applications, both practical and creative. For example, my craft as a poet -- especially one who frequently writes persona pieces in the voices of other individuals -- requires me to get inside someone else’s head in order to write. The words, idioms, and imagery may have been generated by me, but I do this whilst wearing the “skin” of someone else. According to Dr. Baron-Cohen, I should not be able to do this at all, due to an “impaired” Theory of Mind. But I do, and do so frequently. How does one explain this?

It might be easy to explain me away as an anomaly: a possessor of Raven Medicine (if you are into Native American Spirituality), or perhaps someone who has learned how to do this by mimicry. However, I do not believe I am alone in my capabilities to do this. Other autistics are stepping forwarding and speaking about their own perspectives and experiences empathy as well as their abilities to discern what others are thinking or feeling: Cohen-Rottenberg debunked the idea on her Journeys with Autism blog and Yusuf Smith systematically took apart Dr. Baron-Cohen’s ideas on his blog.

Other autistic writers are questioning the very nature of empathy itself. Aspie Rhetor discusses an article by Dennis Lynch, “Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West” which argues that true empathy requires a “bodily displacement” -- in other words, to walk in someone else’s shoes, you literally must remove your feet from your own. Aspie Rhetor also states earlier in her post that “empathy … can only be remotely successful when engaged between people with similar backgrounds, people who occupy similar social stations.” Considering these points, one has to wonder if true empathy is ever possible: how able or willing are we to remove ourselves from our own shoes and truly understand the viewpoint of someone else, especially if they are fundamentally different from us?

Culture Clash

Aspie Rhetor’s statements intrigued me and I started to think about the issues of empathy and culture. The reigning experts on autism may not be taking cultural differences into account with the whole empathy question -- and by culture, I do not simply mean race (which is not a biological truth but a sociological and cultural construct anyway), ethnicity, religion, etc. One must broaden the connotation of the word “culture” when considering this question.

To begin, how do we define “culture”? The World English Dictionary includes the following definitions in its entry for that word:
“1. the total of the inherited ideas, beliefs, values, and knowledge, which constitute the shared bases of social action 2. the total range of activities and ideas of a group of people with shared traditions, which are transmitted and reinforced by members of the group: the Mayan culture”
If we accept this definition as valid, then we must think beyond the general idea of culture and consider non-traditional connotations of the word. Organizations have their own distinct cultures -- for example, I can identify and describe the distinct culture of my place of employment. One could argue that each family has a culture. Both entities fit the second definition’s requirement of having “shared traditions, which are transmitted and reinforced by members of the group.”

Now, let’s expand this out to the idea outward and generalize it a bit more. What if neurotypicals could be considered part of a wider “culture,” and autistics part of another? While I realize I am stretching this a bit, I ask you to consider this idea for a moment. As Aspie Rhetor and others have suggested, neurotypicals may have schemas of what is considered “correct” empathy -- which is an inherited idea by other neurotypical individuals. Those who do not display empathy according to these schemas may be labeled as “lacking empathy.” However, I think of many people who have left comments on my blog who have discussed their own experiences with expressing and possessing empathy, as well as some of the writers on the Autism and Empathy website who describe not only their own empathetic reactions but those of their autistic/Aspie children. Additionally, I think of Laura Nadine’s video, “My Violin Cries” in which she talks about how she dealt with the loss of her violin teacher and mentor, as well as this short video by AspergerSquare8, “Autistic Awareness – Empathy.” All of these individuals attest that at least some of the autistic population possesses empathy.

So, given the above, could it be that what is often misconstrued as a “lack of empathy” is simply the failure of one wider “culture” to understand another? In other words, could the consistent claims of lack of empathy on the part of autistics be the result of neurotypical researchers/scientists/psychologists/etc. judging autistic empathy by neurotypical standards?

Wearing the Other’s Shoes

I recall when the movie Avatar was released that there were many who were critical of the whole premise of the film, which chronicled the desire of a member of a dominant culture wanting to become the “other”: a human becoming a Na’vi and then eventually wanting to join them. Race relations were discussed in light of the film, suggesting “White arrogance” and parallels to Dances with Wolves. After hearing and reading some discussions, and reflecting on these discussions, it is easy to wonder if it is ever possible to wear the shoes of another … especially if it’s someone from a perceived “majority” culture trying to understand someone from a perceived minority. By extension, it’s also easy to wonder if most neurotypicals will be able to understand or empathize with autistic people.

What I might term “dominant culture arrogance” is present in many forms and in many civilizations. For example, one might example caste relations in India and conclude that some arrogance exists on the part of those in higher castes which would stand in the way understanding or empathy -- for example, a Brahmin attempting to see the viewpoint of or empathizing with a Dalit. Or, if I wish to avoid the “majority/minority” dialectic, I might suggest another term: “cross-cultural arrogance.” In this case, it could be defined as the tendency to consider one’s own culture/group/etc. to be universal, natural, or even superior versus that of another. But in either case, the arrogance would exist.

What would cause such arrogance? One might conclude that this arrogance, along with prejudice and biases, were inherited from parents of other family members; unless one choses to reject them, they remain with an individual throughout adulthood. Included with this arrogance would be a natural tendency to look down on those from a different, or perceived “minority” culture (the “other”).

Additionally, another factor which could stand in the way of empathy is simple ignorance -- a lack of knowledge or understanding about the other culture in question. This kind of ignorance may be caused by a lack of exposure to the “other,” possible due to a lack of opportunities (e.g. not actually knowing an autistic person, thus being ignorant of what one would be like). What’s also interesting is that another cause of this kind of ignorance would be the very prejudice and arrogance I spoke of earlier -- such characteristics would cause a person to not want to get to know the “other,” thus the ignorance continues.

The Requirements of Empathy and Understanding: Truth Versus Fiction

It is easy to wonder if one can truly remove oneself from one’s own shoes to truly experience the world through the eyes of another. This, I would think, would require one to leave one’s own culture, upbringing, personal prejudices, mental filters, and even perhaps one’s own identity behind to do this. For many, this is certainly no small task -- it is easier to empathize with someone that you can easily identify with. Yusuf Smith gives the example of the attitudes of French feminists towards Muslim girls who wish to wear veils, stating, “they identify with the girls who do not want to, and insist that their right not to wear the veil comes before the right of those who insist on wearing it to receive an education or, in some cases, employment.” In other words, this would be a form of flawed empathy, and I would imagine it would be very hard for those feminists to imagine themselves wanting to wear a veil. This would require those feminists to leave behind their own ideas, beliefs, and mental filters.

Similarly, it is easy for neurotypicals to imagine a hellish, painful existence as an autistic, basing their assumptions upon their own ideas/beliefs/prejudices. However, in his article, “Don’t Mourn for Us”, Jim Sinclair says that “the tragedy is not that we’re here, but that your world has no place for us to be.” I know this is true from personal experience, as my personal pain related to Asperger Syndrome has nothing to do with the Asperger’s itself but more to do with its encounters in a neurotypical world, which include emotionally painful things such as misunderstandings and prejudice as well as physically painful things such as sensory overload.

However, once prejudice and arrogance has been removed and any “culture clash” I spoke of earlier has begun to melt away, I believe that successful acts of understanding and empathy can occur. First of all, we must remember that the human existence can be summarized by basic needs and desires. I think of Abraham Maslow’s Hierarchy of Needs in which specific needs fall into five categories: physiological (sleep, food, drink), security (financial stability, a safe neighborhood), social needs (belonging, love), esteem needs (self-esteem, personal worth), and self-actualization needs (personal growth and fulfilling one’s potential). While some of these basic needs might manifest differently with each individual, I would argue that these categories are very basic and could encompass many different specific needs and desires. Even beyond these five categories, it might be possible to define the human experience with need and desire as two distinct states of being: the joy, satisfaction, or feeling of security in having one’s needs met versus the pain, sorrow, frustration, or anxiety at either losing something that meets a need or not having a need met at all. I think that the understanding of these two states -- the joy and the sorrow -- is the basis of empathy, unclouded by prejudice, unclouded by personal belief, and unclouded by specific personal desires.

Second, since any act of empathy must begin with the other person in mind, we must attempt to understand the other person with whom we are attempting to empathize -- in other words, trying to find out what he/she wants or needs. This can be as simple as asking a question. Depending on the situation, the question might be, “do you need a hug?” Or, “how are you feeling?,” Or even more basic, “What can I do to help?”

Beyond Theory of Mind

Given what I believe that acts of empathy (at least expressed empathy) require, it would seem to me that Baron-Cohen has incorrectly expressed his idea of what Theory of Mind is. I believe that his “Theory of Mind” should actually read more like this: it is the ability of a person to determine the contents of one’s own mind as well as the ability to correctly assume -- using current beliefs, shared cultural artifacts, and basic cultural assumptions -- what the contents of another person’s mind would be. And according to this definition, this means that anyone -- not just autistics -- would be likely to have impaired Theory of Mind if they are blinded by prejudice, ignorance, incorrect cultural assumptions, and even a lack of respect for the other person.

As documented above, empathy does not require that someone be skilled in this particular “Theory of Mind” and simply requires a desire to understand, put away personal prejudices, and reach out to the other is required. Judging from my own experiences, as well as the experiences of other autistics, I am certain that autistic people are capable of this kind of understanding and empathy. The prevailing definition of “Theory of Mind” be reexamined and considered. Its continued perpetuation will continue to be damaging to autistic people and unfortunately continue to promote the “lack of empathy” myth which continues to plague the autistic community.



A version of this essay was previously published at womanwithaspergers.wordpress.com.

Wednesday, May 22, 2013

"Is Your Son Really That Difficult?"

Shannon Des Roches Rosa
www.squidalicious.com

[mb] Vertical Blinds 3
Photo © Merrick Brown
at Flickr
"Is Your Son Really That Difficult?"

That's what the well-meaning blinds salesperson who just left my house asked me, after I told her I was leery of installing vertical blinds in our family room -- mostly because I was worried Leo would love them to pieces, quite literally.

I launched into kind-but-firm on-the-spot advocacy and acceptance mode. I didn't cry (something I might have done in the past) or get strident (something I am still working on). Instead, I smiled to show how much I love my son, and let her know that she was misunderstanding my concerns.

I told her that I wouldn't call my son difficult, but that his autism means he sometimes has difficulty reining in his impulses. So even if we asked him to please not wrap himself up in or set in motion a great big set of swinging, clanking, flapping blinds, he might not be able to resist. He would likely see them, as he does in most doctors' offices, as more fun than any plaything on this planet. And he might pull them all down, in his enthusiasm.

It's not that Leo is difficult -- it's that I know what can be difficult for him. Why would I put him in a challenging situation, when it can be avoided?

But as we also like to give him opportunities to prove himself, we will probably get one tiny trial section of vertical blinds for now. His ever-increasing maturity may mean that blinds-play has become passé. (Also, we have to do something, as all our floors and bookshelves and furniture are getting bleached to hell.)

The salesperson seemed to get it. She nodded, and said that what I told her made sense because "we all make allowances for each other, especially as parents." Indeed.

I wish more people were so easy to reach.



Previously published at www.squidalicious.com.

Monday, May 20, 2013

On the Sad End to the Search for Mikaela Lynch

Kerima Çevik
theautismwars.blogspot.com

Last week the body of Mikaela Lynch, age 9, Autistic, was found in a nearby lake where she apparently drowned. I am sorry to say that when I saw the red flags of a nonspeaking missing child, a nearby body of water, and unfenced backyard leading to woods, I feared the worst while praying for the best.

I'm not going to comment on the article on Mikaela's death in Cafe Mom's The Stir because I don't wish to increase hits on the Examiner article, which vilified the parents without a clear grasp of what happened that day. We weren't there. We don't know what happened. We only know what is reported to us. I will wait for the police to finish their autopsy and investigation, and pass on my sincere condolences to Mikaela's family.

We have been engaged in teaching our son water survival rather than swimming since his school reported him missing and he was found by chance in February of 2010. He was found near a backyard pond, according to his principal's account of events on the phone. We will never know what happened that day.

But there is a much more critical issue here, a dangerous slope we as parent advocates can easily slide down in our fear that our children might be next, and that we might be scrutinized for parental negligence. Let us not fall into the trap of calling for a behavioral code for wandering, and imprisoning our children in the name of protecting them from harm. Instead it is critical that the billions of dollars being allotted to brain research include funding set aside to understand the causes of wandering, and search for solutions that don't imprison our children and try every parent who will spend the rest of their life second guessing the last day of a wandering autistic child's life for neglect in the court of public opinion.

In my own research on wandering, there were cases of drowning in which the victims were wearing tracking devices linked to police emergency centers. This issue was a matter of public outrage in Colorado in the cases of the drowning of Kristina Vlassenko and the wandering incident of Brandon Wells, who was fortunately found despite the failure of his tracking device. In addition, Brandon's mother was later brought up on charges for the device's failure to hold a battery charge.

It is saddest to me that we tend to forget that all children do deadly things daily. When I was growing up, parents were warned about keeping all children away from old refrigerators. Each year typical children fall in bodies of water and drown. They swim in areas of riptides and are carried away. Children who are capable of reading ignore warnings and fall through ice on frozen lakes. When other developmentally disabled children or typical children are the victims of horrible accidents, the parents are allowed to grieve and media coverage occurs in a humane fashion. Nor does anyone lay blame on the pathology of the children.

Two things have to end here. One, we have to see our children as people with degrees of impairments that need to be addressed and managed; NOT as medical nightmares who need to be behavioral controlled but as people who need accommodation and supports for such potentially catastrophic events. Accommodation must be made so that solutions account for autistic people running from abusive placements in both school and institutional settings.

I made the effort to write this in extreme pain because I don't want us to go down that path where we imprison our children in the name of protecting them. It is our job to empower our children and teach them to survive. It is the difference between surviving 15 hours in water by shouting "to infinity and beyond" and locking your child in a cage to keep the child "safe."

In 2012, I asked the Maryland Autism Commission to recommend survival swimming be part of the educational curricula for all Autistic children and adults because the numbers of first time wanderers with developmental disability who die by drowning is frighteningly high. Unfortunately the Commission wasn't able to include this in their final draft.

I have asked my Congresswoman to consider expanding the Maryland Silver Alert system to include missing Autistic children, who are not covered by the Amber Alert System. Please join me in this effort in your States as well.



A version of this post was published at theautismwars.blogspot.com.

Friday, May 17, 2013

Puberty Resources: The Girls' Guide to Growing Up

We get frequent requests for puberty and sexuality resources and information. While in general, good frank resources are good frank resources -- witness the UU Our Whole Lives Lifespan Sexuality Education Curricula -- specific guides can be helpful too, such as The Girls' Guide to Growing Up.

This book takes girls through all the aspects of puberty: changing bodies, privacy, menstruation, masturbation, etc. It is also written with even more frankness than most puberty guides; I've never seen a photographic guide to understanding when it might be time to change a sanitary pad, for instance. And it reassures girls that while some people have crushes, others don't (since many autistic people are asexual, this casual reassurance during such a foundational time is important). It also tends to use "person" instead of "boy" when discussing sexual feelings, which reflects reality. The tone overall is very friendly and comforting.

It is written for a third grade reading level, with plenty of photographs and illustrations. This tone could be helpful for a girl who needs a more direct approach to understanding what the heck is happening to her feelings and her body (as I will admit I could have used), or a girl with developmental or intellectual disability. But I've also been told that the tone feels too young for girls who are used to reading at a teen level, which is something to consider if you are buying the book for someone else.

If you know of other puberty and sexuality resources that are appropriate for our community, or if you have an opinion on The Girls' Guide to Growing Up, please do leave a comment. -SR

Wednesday, May 15, 2013

Parenting in the Park

arbitrary
I took both of my children to the park the other day. It shouldn't be some sort of big announcement that a mom takes her kids to the park, but I was by myself with my two children, who have very different, needs, wants, and abilities, and I am a chicken. There. I said it. I am a scaredy-cat when it comes to taking my kids out into open, uncontrolled situations by myself, unless Jack is buckled into his wheelchair. He has escaped my grasp so many times, wrenching my shoulder as he goes; there are dangerous situations around every corner, and he is fast. And as mature and amazing Katie is at 5, she really is still a small child who deserves to be looked after on a busy street, or a park... but it is summer, and my children are convincing, so I took them.

Katie providing high direction, high support
Katie was very excited about playing in the cool water fountains that are shaped like Crayons. She got to learn the word "arbitrary" when I remembered that the Park and Rec. department turns off the sprinkler fountains between 12pm and 1pm, and again from 3pm to 4pm. Because, apparently we cannot decide for ourselves when our children should have lunch, and a snack. It worked out fine because she got to play in the water puddle that had already been created, and managed to put together an engineering plan to create a dam that rivals the Hoover. She had no problem hiring the one of the unnamed boys near her to hold 'on' the foot sprayer nozzles to collect water, and the other to bring the bucket to her building site. She seemed like a decent overlord boss.

Meandering with Purpose
Then there was Jack. Precious boy who I forgot to put in bright orange before we left the house; I am rather particular about this. When he goes on a field trip, to camp, into the woods, into a crowd, okay, when he goes almost anywhere I put him in yellow, but more often, orange, actually, bright orange. He has his own hunter-safety-orange cozy jacket for camping trips. The afternoon we "lost" him in dappled sunlight when he was only 6 feet away from us was the last time I let him get near any vegetation without an easy way to spot him.
Can you see him? Yeah, Neither can I.

So of course the first thing he does is head for the only corner of the top portion of this park where I would not be able to see him. I didn't worry a bit because the chain link fence runs the entire way around the park. But wait, I couldn't actually see that corner post, and what if the fence were made by two brothers who got in a fight half way through the project and so there are really two corner posts, and a gap between them which leads STRAIGHT OUT TO THE STREET. I was only about 40 feet from him, but if that corner was open, which I knew it wasn't, but if it was, he was only 20 feet from cars pretending to drive 30 miles per hour.

myBoy in urban camo
I ran. I ran as fast as I could, and I lost a shoe on the way because I am an idiot and had thought, "Oh I can just wear my sandals because I am going to sit and watch my children play, and I will put my toes in the warm sand." I ran across the tan bark that my son loves so much with one open-toed sandal and one bare foot, and there he was, in the corner, where the fence was perfectly closed and built to code etc. I tried to give him some space, but it was very hard for me to not be able to see him, even if I knew there was no way out except past me.. because maybe today was going to be the day when he gains that fence climbing skill? We just never know. And if you are wondering if he laughed a little bit when he saw me plucking tan bark out of my sandal, the answer is, "yes." I let him play in the corner until he was done, and it may be my imagination, but as soon as I stopped being riled up about it he stopped going back there.


ooooh so close to escape.
Our visit to this little neighborhood playground, it wasn't all bad, or scary. On the busy street I had to parallel park between two cars that were over their little hash lines into my space, but we did get the safest spot, right next to the path that leads to the park. And every single family that went through the gate on that path, closed it behind them. The weather was beautiful, and Katie was a good listener the entire time, which was pretty remarkable all by itself. When it was time to go, she left the park without complaint or stomping of the feet.

And while we were there, Jack got to work on those motor skills that are so important. He practiced "jumping off", which is different than "walking off" of something. I got to practice letting my son be outside of my grasp, which feels a lot like being "thrown off" of something. I did put my toes in the sand for a moment, and the kids had a great time playing.


There will be a day when my children don't want to go to the park, not like this at least. An afternoon will come that my daughter doesn't ask me, even one time, to play with her. It's possible that Jack will live somewhere without me when he's older. I want my kids to remember playing and running around. I want the smell of sunblock to remind them of all those days of being in the sunshine in our beautiful park-filled city. I'm trying to remember that these are the days when we should paint, or make lemonade.. or do as Katie has asked and have a lemonade stand with a painted sign.

And I am trying to get over my fears that by myself, out there, in a park, or on a walk downtown, that I won't be able to keep both of my children safe. I know I am perfectly capable, but there are so many ways things can go wrong, and I've thought of them all. My brain hurts quite often with all the "choose your own adventure" stories in my head. However, I'm aware that emotion does not make fact, nor does a lively imagination, so the truth of it is, that most of the time, everything goes just fine. Everything will be okay, or it won't, but fear has very rarely led to anything good in this world, and it certainly has kept me from some beautiful days in the park.

----
 
A version of this essay was originally posted at jennyalice.com

Monday, May 13, 2013

Imagine

David M. Davison
fightingforhope.wordpress.com
  • Imagine needing order in a disorderly world.
  • Imagine creating order, and being laughed at for doing so.
  • Imagine needing precision in an imprecise world.
  • Imagine being precise, and being told it is often unnecessary.
  • Imagine needing structure in an unstructured world.
  • Imagine creating structure, only for people to tear it apart.
  • Imagine needing words to have their literal meaning.
  • Imagine taking words literally, only for people to consider you stupid.
    ----
  • Imagine order is innate, and you have to work out when order is not required.
  • Imagine precision is innate, and you have to work out when precision is not required.
  • Imagine structure is innate, and you have to work out when structure is not required.
  • Imagine taking words literally is innate, and you have to work out when the meaning is not literal.
    ----
  • Imagine becoming anxious when you see the 'Random' button on your CD player.
  • Imagine becoming anxious because someone gives you £10 when they owe £9.60.
  • Imagine becoming anxious when you see fiction and non-fiction books mingled.
  • Imagine becoming anxious when you are told to wait 10 minutes and it is 11 minutes and counting.
    ----
If you can imagine this, then you can begin to imagine my world.
Welcome to my Asperger’s world.

Friday, May 10, 2013

Alternative Autism Science: Don't Believe the Hype!

Shannon Des Roches Rosa
www.squidalicious.com

My son has had a challenging few months. We have been scrambling, hard, to figure out the best ways to support him, help him feel comfortable and settled. Medical treatments have helped, as has a forensic approach to figuring out stressors in his environment, as has looking back through his daily record for patterns in sleep, illness, exercise, and routine. But when he's still unhappy or dysregulated despite all our best efforts plus the efforts of his extended team of doctors, educators, and therapists, I feel like I'd do anything to help him.

An autism parent at such a loss is in a potentially dangerous spot. Their autistic child more so. Because if mainstream medicine and legitimate therapies and approaches can't provide answers, that's when parents tend to look elsewhere. That's when they risk exposing their child to therapies that can cause physical harm (e.g., chelation), mental harm (claiming to "cure" autism and so teaching an autistic child that they and their neurology are unacceptable), or use up funds that could be put towards legitimate autism therapies and supports.

Bannack Days 2008-snake oil
Photo ©VirtualReality/Flickr
It's enticing, hearing from other autism parents about seemingly miraculous approaches or therapies. But too many "autism doctors" -- legitimate MDs even -- use their medical credentials, combined with a soothing bedside manner and sciencey terms to convince questioning parents that they understand them, they can help them, they can give them the answers mainstream science can't. It's a ruse, and parents need to be extremely cautious about putting their faith in such people, or giving them money -- or letting them have any influence over their autstic children's welfare.

Parents need to be especially careful when case studies are used as evidence to support alternative autism therapies. Most non-scientists don't realize case studies can explore or set the foundation for a hypothesis, but do not prove anything unless the studies' results are confirmed and replicated. And not all published science is created equal -- there's a lot of pseudoscience and half-baked science out there that looks just like real science. We need to approach doing our own research with caution, advises Gina Kolata:
"…researchers are now raising the alarm about what they see as the proliferation of online [science] journals that will print seemingly anything for a fee. They warn that nonexperts doing online research will have trouble distinguishing credible research from junk."
This is why I always contact scientists when I have questions about autism research -- they tell me about the pros and cons, not just the pros. And their only interest is in whether theories are valid and supported by sufficient evidence. They are not interested in 'balance,' and, as Curtis Brainard writes, understand...
"…the problem of 'objectivity' in stories for which a preponderance of evidence is on one side of a 'debate.' In such cases, “balanced” coverage can be irresponsible, because it suggests a controversy where none really exists. (Think climate change, and how such he-said-she-said coverage helped sustain the illusion of a genuine debate within the science community.)"
Parents need to be very careful about alternative autism approaches and testimonials. Very careful. Usually when an alternative approach "works," there is something else going on -- natural development, the very real placebo response, the fact that families seek alternative approaches when in crisis and the fact that they're coming together and paying attention and focusing can help a lot, etc. The problem is that the success or development is then attributed to the alternative approach.

It gives me no to pleasure to point out how alternative autism practitioners take advantage of parents' frustration and desperation to help their kids. Autistic people and their families deserve better and legitimate resources, but as of now there are too few of those resources, plus they are not always easy to find -- and certainly not easy to fund. But we have to stay strong, we have to decry those slippery autism hucksters and their "science" whenever they start targeting us -- and our pocketbooks.

Wednesday, May 8, 2013

Autism Is Not Just An American Thing

Emily Willingham
emilywillinghamphd.com

You’ve heard of autism, right? Thanks to ubiquitous blue puzzle pieces, TV shows and movies, and daily headlines in English-language news media, a lot of people in the United States have some awareness about autism, even if it’s a caricatured version presented to gain donations, viewers, or readers. In fact, in the US, many autistic people and their allies have sought to move on from awareness and talk more about acceptance.

In non-USian parts of the world, though, autism doesn’t necessarily get this level of attention, much less acceptance, despite the fact that autistic people are everywhere. One of the largest epidemiological studies of autism identified it in 2.64%% of South Korean schoolchildren, and anecdotal assertions to the contrary, autism does exist in countries like Cambodia. Autistic people also live in Yemen, where a lack of awareness can seriously affect outcomes. As Yemeni mother Fam Um Ahmed said in an interview with Sadeq Al-Wesabi, writing for the Yemen Times:
Although I’m educated, I had no idea about autism, and what I’d heard about it was that it’s a horrible and destroying thing. I didn’t realize at that time that my child was suffering from autism until the doctor told me,” she said.

“Autism is not an easy thing for parents. It’s a shocking  thing,” she added. 
Um Ahmed advises mothers to take action if they notice their child is very introverted and doesn’t seem to be able to keep up with others in their age group. 
“They shouldn’t listen to their friends or neighbors who advise them not to take their children to the autism center at an early age,” she said, adding that there is a plethora of information on the Internet that can guide parents through the often tricky situation of determining if their child needs special care. 
Currently, Um Ahmed is satisfied with her child’s progress.
What awareness Um Ahmed did have about autism was as something “horrible and destroying,” a widely disseminated caricature that overshadowed any possibility she would recognize her own child’s symptoms of the condition. Part of autism awareness anywhere should include a more nuanced discussion of what autism looks like so that parents and clinicians can recognize early signs instead of looking only for the manifestations of a monster.

This recognition of early signs is important to effective therapy. According to the article, Yemen lacks specialists who know how to implement the latest in autism interventions. In addition, the article notes, the media coverage that can lead to topical burnout in the US is lacking in Yemen, contributing to the absence of awareness. That, in turn, has real consequences for autistic people, says Seham Al-Sadmi, director of the only facility in Yemen for young autistic people:

Due to this lapse in expertise and awareness of this mental condition, parents are often in the dark and without guidance in diagnosing and caring for their autistic child. They can also be in a state of denial regarding their child’s circumstances, according to Al-Sadmi.

“The majority of the cases that are brought to the center are in very developed stages. Some parents consider children with autism mad,” she said. “Most of the parents bring their children at an age of 12 or 13. It’s very difficult at these ages to provide them with rehabilitation programs and training.”
Studies suggest that interventions at a very early age can smooth some of the aspects of autism that interfere with a person’s quality of life. But the lack of awareness in Yemen coupled with what Al-Sadmi calls “government apathy” means limited access to such interventions for autistic children in Yemen. The single facility in the country currently exists thanks to a mix of government and international funding, but that doesn’t help families who live too far away and can’t afford to travel to the center for help.

Yemen doesn’t seem to have a large, well-funded national organization to litter the country with blue puzzle pieces and ask for your donation at a Toys ‘R’ Us checkout. Its media don’t appear to carry the obsession that the US media have with autism–in fact, a search on “autism” at the Yemen Times turned up three articles. A search at NBC.com? That gets you 721 hits. In the US, that level of coverage starts to become background noise. In Yemen, awareness -- or a lack of it -- really does matter.

It’s not a huge shock that we in the United States tend to be US-centric when we talk about anything–politics, religion, global climate change, autism. But as we spend our time and energy here arguing the finer points of autism causation, writing alarmist stories about every scientific study that mentions autism -- whether it studied it or not -- and engaging in internecine battles in the autism community, autistic people walk around all parts of the globe, needing resources and support and useful interventions as much -- or even more -- than autistics in the United States. Perhaps it’s time more of us became aware of that.



Previously published at Forbes.com.

Monday, May 6, 2013

Rethinking Unhappiness

Ariane Zurcher
emmashopebook.com


I was alerted to an article written by Dr. Michael Oberschneider entitled Ask Dr. Mike: Expecting and Anxious About Autism. In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.” In the comments section people weighed in with their thoughts. Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist. They seemed to equate happiness with a lack of concern. A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents. One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this -- there was a time, not so very long ago -- when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child. I no longer feel that way, and the reason is I stopped trying to cure my child of herself. I feel sad that this was my experience. I wish it hadn’t been. I know my attitude negatively affected my daughter. I know it negatively affected my entire family. I know now that the depression I felt was because I believed I could cure her. I was angry, I was depressed, I believed that no one could truly understand. I felt alone and isolated in my sadness and rage. I was engaged in a war only to realize I was fighting myself. 

I know this now, but I didn’t then. I wish I could hit the rewind button and do it over differently, knowing what I know now. But I can’t. I have to move forward. In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes. Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions. I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic. And yes, there are times when I worry about both their futures. There are times when one of them does something or is going through something and I find myself concerned. Concern is one of those feelings, like worry, that actually does not help my child. These are things I feel and it is up to me to figure out what to do about them. Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems? Are those problems something I can control or are they things that require patience, compassion, love and support? What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic with unreliable verbal language is the misinformation, the fear, the misperceptions, and the ignorance of those who meet her and what they then assume because of what they see. Fear coupled with ignorance = prejudice. We fear that which we do not know or understand. We make judgments, we believe ourselves to be superior, we then behave accordingly. None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child. I know now this was not true. It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness. I assumed things about her that I now know are not true. They are not fact. What is true, what is a fact is this: My Autistic child is far more capable than most people give her credit for. My autistic child does not use language the way most people expect. Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing. She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable. At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage. My ability to feel joy is an inside job. It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over. I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs. Throw it all out. It isn’t serving you and your suffering isn’t helping you help your child. Isn’t that ultimately what all of this is about? Aren’t we all trying to be the very best person we can each be? Isn’t that what we hope and want to model for our children? Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 
A & L


Previously published at emmashopebook.com.

Friday, May 3, 2013

The End of April Doesn't Mean the End of Autism Acceptance

Karen Bower
railman.blog.co.uk

I’d always had niggling feelings about Harry, but I remember with absolute clarity the day I knew.

We’d moved to the other side of town and, driving home, it made sense to use a different route. Harry lost the plot every time. For hours, he would rage at me. I didn’t understand. Was it the move? The house? His new bedroom? One day, to avoid the otherwise inevitable meltdown, I took the ‘old’ route. Harry was perfectly pleased with this. It had taken me weeks to understand that he had no issue with the move or house (Though, two years on, he still calls it New House). It was taking a different route. Ironically, since then, he’s never had a problem with it. Whatever the problem, he’d worked it out. I knew, right then, I had to work it out too.

The time until we got a diagnosis was tough -- a battery of assessments, a lot of which were stressful. It’s hard to feel you are putting your child through something they find difficult. But now, at least, I felt I was doing something. I knew a lot about what was wrong for Harry, now I was making a start on understanding what was right. But, truthfully, it was an extremely difficult time.

It is said that the darkest hour is just before the dawn and, for us, that is certainly true. Our darkest hour was when Harry went to school. I knew he shouldn’t. The niggling feelings no longer niggled; they screamed at me and held up placards. But I was still desperately trying to switch the lights back on.

The local school had a good reputation, was close to home and would accept him. Accept. That clouded my judgement, because no other school I’d spoken to had uttered it. Here was a school willing to accept him.

Harry would get the support he needed, right? Socialisation was what Harry needed, right? Harry had to go to school, right? This was a good thing, right?

WRONG. There is a big difference between ‘acceptance’ and ‘legal obligation.’

It was the worst few weeks of our lives. Oh, all the right things were said. He was fine, they said. He was happy, they said: They took photos of him to prove it. No mention was made of the daily physical restraints, of the escaping tricks (personal best; eight minutes -- just as well the school was close to home). No mention he spent more time under the table than at it. No mention I was called to collect him because he was ‘sick.’ He wasn’t sick. They just didn’t want him on site. The feeling was completely mutual.

The school had no intention of supporting Harry. In fact, they had every intention of proving he didn’t need supporting. One Friday, he came out looking worse than usual. And ‘usual’ wasn’t at all good. Harry never went back. Harry was elated. I am sure the school were too.

Many people advocate a period of unschooling once a child is deregistered and I agree completely. It’s allowing your eyes readjust to life without the light. To slowly find the natural light. Though, I possibly took this slightly too literally -- Harry and I spent a lot of time in a dark room.
I didn’t realise it at the time, but once Harry deregged, life got better. Because I stopped trying to make him conform. I accepted him. I threw away the rule book because it did not apply to us.

There are a million upsides to throwing out the rule book, but there are a few downsides. One of the hardest is to accept is that some friendships fail simply because of your child’s autism. There are parents who place the blame for Harry’s behaviour firmly at my feet. They are good parents and they do not have children who act like Harry. Therefore, Harry’s behaviour is obviously caused by my shortcomings as a parent. What I see as meltdown avoidance strategies, they see as pandering.

And, it’s true to say, some people simply don’t want their children to be around mine. One mum asked me if her child could catch autism off Harry. ‘No more than Harry will catch stupidity off you’ was my reply. And in that sense, I have to take some of the blame. Other mums understand the ‘Rules.’ I do not. I stand up for my son because right now, other kids (and sometimes adults) mock him and have him take the blame for things he did not do. I helicopter parent Harry because of this and because I know he is unpredictable. I’ve also become extremely adept at helicoptering Other People’s Children. While I don’t really understand the ‘rules’, I’m pretty sure one of them is: Thou shalt not discipline Other People’s Children. As I said, that rule book doesn’t apply to me.

It’s fair to say, several ‘friendships’ have suffered. But every cloud has a silver lining and in this case, it is the fact that the friends I’ve ended up with are amazing. Ones that accept, even if they don’t understand.

The last few years have been tough and people say again and again ‘you should have asked for help’ -- but where to start?? Just as Harry wasn’t able to articulate why he needed to take that first exit from the bypass, I couldn’t articulate the help I needed ... And, as it turned out, all I needed to do was accept Harry: My wonderful, cheeky, loveable, irascible, naughty, loving, intelligent, logical, bossy, fascinating, gorgeous, awesome, speedy, willful, determined son.

Will there be another ‘Eureka’ moment when I realise we’ve made it? When I realise the dark days are behind us and we’ve truly reached the sunshine? Obviously not. Because, writing this, I realise we're already here. Autism Acceptance no longer stops at the end of April. Now, it’s a way of life. Somehow, someway, we made it.

How did we get here? Really, I am not sure. But I’m pretty sure we got here on a train.

Wednesday, May 1, 2013

Letting Tears Flow

Melody Latimer
asparenting.com

At some point, everyone will have to deal with loss and grief. Whether it’s the loss of a pet, relative, or friend, it can affect us in ways we never expected. I recently suffered a loss that was unexpected and quite possibly the hardest thing I’ve ever had to endure in my life.

We hear sayings like, “What doesn’t kill us makes us stronger?” and “There’s a purpose in everything.” In the moment, these things can sound like, “You’re making a bigger deal out of this than is necessary.” I’ve been lucky to not hear any of those dismissive statements.

But there are some lessons I have learned:

Take your time. There’s no set amount of time that you are supposed to handle getting over the loss of someone or something you care about. Sometimes, you never get over the loss, and it’s just a matter of learning to live your life with what has happened.

Find people who can help and support you. Many of us live needing support every day. In times of loss, it’s even more important to have help and support that goes beyond the day to day. In my situation, I really had to identify what was slipping. This meant talking to people about what was and was not happening. Then the next step of asking for that help and support. For me, it was finding 2-3 people who I could depend on to coordinate that support as well.

Crying is not a bad thing. If you don’t cry in times of loss and grief, I’m not saying you have to. But, if you need to, know that it is fine to cry. It’s really not a bad thing. It is actually a good thing if that is what you need. I feel like a lot of us are told that you can’t cry about things or that we’re being bad or defiant or something just overall negative if we do. It’s just not true.

Talk about how you are feeling often. Even if you’re not talking to the same person, or if you’re saying the same things, or if you’re just putting it out there not to any particular person, talk often about how you are feeling. Even if there are no exact words, talk about that confusion. Just talk, talk, talk. Typing, or art, or out loud, or through music, just get your emotions out. Eventually, it will make sense even if not to you, but to someone, who can help you through the tangled web of emotions. By not keeping it to yourself, you can start crawl forward, step forward, walk forward, run forward and eventually re-enter the world that paused.

Grief is a hard thing. Sometimes it can take hours, days, weeks, months, years to learn to live with. It’s not about becoming stronger. It’s not about learning some grand lesson. It’s just a part of life that we must all endure. I just hope that I can teach something to make it easier for you when it’s your turn.