Showing posts with label empathy. Show all posts
Showing posts with label empathy. Show all posts

Wednesday, January 22, 2014

Here, Try on Some of My Shoes

Kassiane Sibley
timetolisten.blogspot.com
wearelikeyourchild.blogspot.com

When a parent tries to kill an autistic child, people come out of the woodwork to demand those of us who say "down with that sort of thing" walk in that parent's shoes. They seem unaware that we Autistics, too, have shoes.

So this is an illustrated guide to most of the shoes I remember walking in. Please return them in good condition.


child's white two strap sandal

This is very similar to the sandals I was wearing when it became clear I could read. I was about two, in my grandparents' kitchen.

I could not speak yet, but I was reading. Catalogs and cookbooks mostly, these are what was at my level and had more words than pictures. I also distinctly remember pouring my juice on my lunch and being distressed that the juice wouldn't go back in the cup at this age.

white velcro kids shoes
I had a pair of shoes like this around the time I was diagnosed. I also had a pair of Punky Brewster sneakers but what I really remember is kicking things with my white velcro shoes. And velcroing/unvelcroing over and over and over.

I was wearing similar shoes when I learned how to speak. My first words were "mommy go away in the car." And I put them on the wrong feet. And I was wearing them when my mom split my lip slapping my face because I didn't look her in the face. And I was wearing them when I realized that all boys look alike in Kindergarten. And when I found out that when you can't tell the teacher who is being mean, they're meaner, because they get away with it. And when I learned that kids will be nice for a week to get a movie and popcorn, but then they'll be mean again because the behavior chart has the weird kid's name on it, not the names of the people who are the Antecedent to the Behavior.

I was not wearing these or any other shoes during ABA sessions. Not after the first time. I had strong little legs even then.

white laceup child sneakers with pink trim

These were my first tie shoes. I wore them to soccer practice. I wasn't good at soccer and only played in 1st grade. I was overwhelmed and afraid of the ball (I couldn't track it) and too much was going on. I regularly melted down when we played Monkey in the Middle; I wasn't very good and so the coach called me Monkey and I thought he was making fun of me (spoiler alert: he was. Adults make fun of children all teh time). So that was it for soccer.

I was also wearing these shoes in class when the teacher made fun of my handwriting. I don't think I qualify as dysgraphic but I certainly had poor fine motor skills. She'd call me up to the board to write phonics lessons on the board and then mock my handwriting. She didn't like that I was already reading at a high school level so she made fun of my writing. She even told my mother that she wouldn't let me read at my level until I had nice handwriting.

These were on my feet when I started noticing what felt like really intense in-body experiences. Not out of body, in body. Like I was stuffed somewhere up inside myself and my body was a mecha. It was very strange, depersonalization or derealization or something. It was also seizure activity, but I couldn't express it very clearly and so instead of aggressive treatment for epilepsy, I got aggressive treatment for "off task behavior."

And of course the bullying just ramped up and up.

forest green lace up suede shoes

If we are looking at life as a series of shoes, these might be the ones that indicated my mother's good-parent choices were going down the tubes. She sent her Autistic, sensory defensive, already bullied to PTSD child to a 3 story school in green suede oxfords. It was the '90s.

So let's talk about the years I was at that school, yes? I have already talked ad nauseum about my mother, and all you folks want is for me to take her shoes for a ride, going to far as to defend her abusive behavior (which started when I was at the Green Shoes School). So go review my posts about my mother, and then we're going to talk more about this shoe option.

In theory, I wore these shoes to a private school that sought to meet all my educational needs -- those of an executive-functioning challenged, sensory challenged, socially interesting profoundly gifted child. This school was advertised as being very good for children like me.

In practice? I had no trouble whatsoever grasping the academic content. It was not a challenge. Getting the work done was because the attitude was still "if you're so damn smart just do it, god, what are you stupid or something?" I was wearing these shoes the first time someone called me "retard." It was at the Green Shoes School where I got locked in a locker as teachers watched -- and got suspended for kicking my way out. It was at this school where I got pushed down stairs, locked into places, touched without permission, had my books stolen, had people cut out chunks of my hair (and get away with it, possibly because I have a shit-ton of hair or possibly because the teachers just did not care). It was at this school where the principal threw an ice bag at me after I got hit in the head in PE class. The PE teacher wouldn't let me get ice. I had a concussion. This was before I had dents in my skull. Shortly before, but before.

It was here that I stopped attending art class because it was hell. Sensory and social hell. It was here that I learned that you never, ever tell an adult or authority figure because when you do, they make your life even harder. It was here that I learned it is easier to hit back than it is to get help.

Where was my option to snap? Walk in my green shoes a while.

black suede lace up shoes

These black suede laceup oxfords are similar to the shoes I wore to high school. They started out all new and whole. My self concept was pretty trashed, however, and any family relationships were well on their way to the sewer too.

See, I got to ninth grade knowing I was smart enough to do anything academic, yet too stupid to actually do it. I got to ninth grade knowing it was my fault if anyone hurt me, even very badly, because I fluttered my hands or didn't look at their faces or didn't grasp that they were trying to be funny fast enough. I got to ninth grade knowing that everything is bullshit.

Physical Education (PE) was hell. Not like middle school hell, where an incompetent fool allowed sixth graders to pick teams -- always based on popularity, not actual ability. And even if it was ability that's still cruel. More in the change fast, run around in a loud bright echoey place just long enough to get really unregulated, change again. So what does an unregulated body do? It cries. Or mine does, given space to just cry and not have anyone in my space. So there was lots of PE crying, and trying to explain that it wasn't anything wrong, I just couldn't stop crying.

There were things wrong, but they weren't PE.

The bullying mostly tapered off in high school (you only need to scare one person who pulls your hair...), at least from fellow students. Teachers kept up with the "if you're so damn smart why are you so damn stupid?" and I stopped taking classes that were academically even a bit of a challenge -- no one would help me get set up to do the work, so fine, I can pull a great GPA in classes that I can do actually in class.

I beat the valedictorian of the class above me for the highest grade in our Biology class. Yet I couldn't write a term paper on a word because no one would tell me the requirements. For not magically having this knowledge -- and a printer that wasn't dot matrix -- I was all sorts of stupid. Just ask my Freshman English teacher. And my mom was out of f**ks to give, just telling me the same thing -- that I was smart so figure it out.

These are the shoes I was wearing the first time my mother threw my head into a wall. I think. That might have actually been at Green Shoes School. I know I was wearing these when she started trying to start fights in earnest. Maybe once I hit 90 pounds she thought she'd get some sympathy? She was around 150 so I was still outweighed.

These are the shoes I was wearing when I had to jump out of the window to get to school in my sophomore year because my stepdad wouldn't move. The day my mom said she didn't care unless he was naked about to rape me, the day I knew she knew he already had.

These are the shoes I wore to holes. I walked through snow in them, walking home or to the gym to avoid home. I walked through rain in them. My feet got very wet and very cold in these shoes. These are the shoes I was frequently wearing at church where I had to pretend everything was pretty and lovely even though it wasn't.

green suede skater style shoe

OK so let me talk about these shoes. I actually had 2 pairs. And they weren't identical to these, but I could not find a pair of Surge-green late '90s Sketchers to use as an illustration so here we are. I had my pair, which were the color of that soda, Surge. Remember Surge? I do. I remember not understanding the big deal. And the other ones were blue. A sister and I were in the same shoe size for about five minutes and I got a second pair of sneakers out of the deal when she grew again.

I got a pass to wear sneakers to school in late high school because my ankles were always, always jacked up. I wore, therefore, really brightly colored sneakers to school. It's probably the worst thing I did as a kid. Being unable to do homework is actually not misbehavior, contrary to the opinion of everyone around me.

My shoe pass coincided with my mother being more and more physically abusive, my last name donor's wife being more and more emotionally abusive. I had a group of friends at this point, but what does that do if you're not sure you'll survive your drunk, unpredictable mother?

I was wearing these shoes when I was put on Adderall. I was wearing them when the side effects were so bad that my gymnastics coach made me promise to never take it again. I was wearing them when my mother tried to talk the doctor into jacking up the dose and then she stormed out when he asked if she was going to take them herself.

She was going to take them herself. But Autistic children drive their parents to drink, smoke, drugs, and murder, right? I should walk in her shoes.

These are the shoes I was wearing when I went to competitions. This isn't particularly relevant, except the day of a state meet in a year I could drive. My mother wanted me to go to church with them before the meet. I declined because everything always smelled like smoke, there is no getting smoke out of a leotard, there really isn't, and because I did not trust her to then take me to the meet on time. We always did have a different sense of what on time meant.

She told me that if I didn't go with them to church I couldn't come back.

I had prepared a bag for this weeks before, because I knew what she was like. I knew escape readiness needed to be a thing.

I dragged some blankets and the things I needed for the day through my house and back yard with my mother screaming obscenities, demanding for me to come back so she could beat me or burn me or whatever, as fast as I could go, in these shoes.

They took me rotating through houses as my mother tried to report me as missing and wandering and what have you after that, tried to get me committed and under guardianship. You can't commit someone you can't find, and it was clear, oh so very clear, that my mother meant me no good at all.

She told me I could never come back. And I didn't. These shoes took me out of there, but first they walked through all sorts of hell. Try them on?

light tan feet, the left one has a black ankle brace

These shoes took me into battle. They took me into battle the day my mother told me to come back and let her dent my skull again or never come back at all. I won state champion that day, and then cried on friends because I didn't know what to do. But these are my battle boots, my callouses and my ankle brace and now the screws in my ankle, and the order of things is do the job, then lose it.

Sometimes, before that day, it was a battle boots day -- a competition. Sometimes I'd get there whole and fresh and unstressed, riding with a teammate or my sister or occasionally just my mom. Sometimes I'd be stressed, often from my mom. Sometimes I'd have already put a shoulder back in place that day, or my stepdad would have been forcefully throwing his seat into my knees the whole ride. Autistics are not the only people who "have aggressive behaviors," but when he did that it was acceptable. I don't know why. It was though. Should I walk in his shoes?

white sneakers
I think I had a couple pairs of these, only mine had laces. They walked with me from the homeless shelter to all sorts of places. Before that, they were on my feet when my last name donor's wife threw hot coffee all over the elf dress I had made myself. They were on my feet when I fled my last name donor's house because his wife just would not get out of my face and I hate, hate physically defending myself but just once flight was actually somewhat an option. I had to knock over a sibling who was twice my size, but he was on the stairs and had plenty of opportunity to move and was looking for fight. If I were not moving so fast, again, I could have died that night. Or been wrongfully put in a hospital or guardianship.

These shoes came with me when I was trying to get my med situation for epilepsy figured out. They took me in the car, on busses, on foot, to pharmacies and to the doctor, the very nice doctor who let me pay with writing instead of with money when I had no insurance. They took me to apply for Medicaid, when they told me I should get knocked up if I want insurance so badly. They took me to grocery stores where I'd get lost in the chaos.

They were my homeless shelter shoes. The shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night. 

One more time, with feeling: The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

These were the shoes on my feet when I was very, very physically ill, when my mother told me to get a real job or die on the streets. That's the last time I ever spoke to her.

These were the shoes I had when, technically, I did die, for some definition of die. These are the shoes of the year of the seizure, a year I barely remember because frequent seizures don't let your brain move things from short term to long term memory.

These are the shoes I had when I found out "very physically ill" was adrenal insufficiency, and that it was actually quite surprising that I hadn't died from it yet. And these are the shoes I had when the year of the seizure ended.

These, too, were the shoes that eventually took me into the west, when I had to relearn how to walk. These are the shoes that took me to oh so many doctors who did not believe an orthopedist screwed up my ankle surgery. The first one who actually looked at it was appalled at exactly how messed up my ankle was, but Autistic people don't understand pain, you see, or how things work, so I could have been making it up.

My left shoe wore out ages faster than my right one because I didn't walk with my right foot for nearly a year. For a while I was living on a rice cake and peanut butter a day, nothing else, because I could not get to the store and bring things home. The Spokane Autism Society kept me from starving to death. They were the first autism organization that I met that did actually helpful direct action for an autistic person. I was 25 and they were the first.

How are these looking for you?

yellow rock climbing shoes

Or maybe you'd like these. These are my rock climbing shoes. I was wearing these when a teacher told me, straight up, that he refuses to teach autistic students, that I cannot appreciate the risk inherent in rock climbing, perhaps yoga would be more my speed. This teacher broke all sorts of privacy laws, and the school didn't care, because I am Autistic.

blue sparkly converse style sneakers

Are these more to your liking? These are the ones I was wearing when, again and again, supposedly good people -- you know they're good because they will tell you they're good -- assaulted me with flash cameras. Walk in their shoes! They want a picture! A flash picture! The ADA doesn't really exist.

I was completely confused and disoriented, not quite sure of my address, more than once because of this. These folks claimed again and again that they'd make access a thing and instead recruited a professional photographer to do their flashy dirty work. Portland Lindy Society, fuck yeah.

Should I walk in their shoes? Is the epilepsy and the autism contagious from dancing with me? I'm actually a good dancer. Take a spin in these shoes.

lime green converse style sneakers

Or try these. They're the shoes I wore to mourn at the ASAN Vigils both years now. I was wearing them when I heard about Alex Spourdalaikis. I have explained ableism in these shoes. The last time I was called "retard" to my face, I was wearing these shoes. It still hurts, just so you know. One of the many times a parent told me, to my face, that she'd have understood if my mother killed me, I was wearing these shoes.

That was at school.

The disability services people nearby shrugged and asked what I wanted them to do about it.

I want, just once, for the people who are supposed to be on our side to be on our side. That's all.

dingy grey sandals with pink trim. One has its unevenly worn sole showing

Or these. These are the ones I wear in the summer. These are the shoes I was wearing when I heard about Issy Stapleton. These are the shoes I have been wearing to get shit done, because it doesn't stop needing doing just because the world sucks, while people are defending the attempted murder of Issy Stapleton.

These are the shoes I wear to go help other Autistic people because folks are too busy yelling about services for parents to see that we're being shoved into the cracks to rot. These are the shoes I wear to go do things so my mind doesn't crack under the hopelessness of it all, sometimes. These shoes are falling apart at the seams, but they're mine.

Maybe you should take them for a spin.

----

A version of this post was previously published at timetolisten.blogspot.com.

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.

Sunday, December 16, 2012

Autism, empathy, and violence: One of these things doesn't belong here

Some news coverage in the last 24 hours has mentioned autism in the context of the tragedy in Connecticut, particularly referencing Aspergers or "high-functioning" autism. Talking heads have brought up the "empathy" factor when discussing autism, and I'd like to set some of the record on that straight.

Empathic ability comes in two forms. One is the social ability to recognize the emotion someone is feeling by following social cues, subtle vocal fluctuations, and other nonverbal communications. Psychopaths, for example, might be quite good at reading people, at applying this cognitive empathy and then possibly exploiting it. Autistic people, on the other hand, generally tend not to be that great at this kind of recognition in non-autistic people. After all, the hallmark of autism is difficulty navigating this territory and registering the meaning of a nonverbal language that is unfamiliar to them. Worth noting, non-autistic people also seem to struggle with reading the nonverbal communication of autistic people. It can also be difficult for autistic people to automatically place themselves situationally in the other person's shoes and intuit the emotion the other person feels, although again, non-autistic people seem to struggle to do this for autistics. Autism does not, however, preclude a person from understanding a clear communication about emotion.

The other form of empathy follows on the recognition of the emotion, whether the message comes through verbally or nonverbally, intuitively or not. That's the form in which you not only can intellectualize the person's emotion but also can internalize and feel what they are feeling, known as emotional empathy. The gap for psychopaths comes in here: They seem to lack this emotional empathy. But whatever deficits autism might carry in terms of recognition, it makes up for in terms of the shared feeling. My experience has been that once an autistic becomes aware of the other person's emotion, the feeling comes without a social construct, naked and in full, unmodulated. Certainly, the expression of their feeling can be more intense. Research shows that people with Asperger's are not that great at cognitive empathy but that their emotional empathy does not differ from people without Asperger's, whereas children with conduct disorder show the reverse pattern.

My 11-year-old son is diagnosed with Asperger's, soon to be simply "autism," thanks to impending changes in the DSM5. He is a rowdy giant of an 11-year-old who loves tumbling play with his brothers, but his spirit couldn't be more gentle. When he finds a spider in the house, he carefully gathers it in a tissue and places it outside, alive. He can't bear to watch people crack tree nuts, like pecans, because being something of a tree nut himself, he feels pain on behalf of the nuts. He is so attuned to all of my nonverbal communication that he will recognize and respond to a fluctuation in my mood faster than anyone else in our house, including my husband.

He knows about the Dec. 14 shootings in Connecticut. When he learned about them, his first response was to turn away in the chair where he was sitting, drooping his head over the back. He stayed that way for many long minutes, quiet and still. When he turned around again, my child who rarely, rarely cries, had tears in his eyes. And then, his first urgent concern: That we break from homeschooling and go get his brother, our youngest son and in first grade, from school ... now. And as we drove to the school to pick up his brother, whom I badly wanted to see and hug and hear, my oldest, autistic son voiced what I'd already decided: "Let's not tell him what happened. That's not something he needs to know. It would make him too anxious and scared." Perspective-taking and empathy, you see.

Planned, social violence is not a feature of autism. Indeed, autistic people are far more likely to have violence done against them than to do violence to others. No one knows as of this writing what drove the Connecticut shooter to kill 20 children and 7 adults, point blank, although obvious candidates are rage, hate, a huge grudge against humanity, and some triggering event. But if he turns out to have been someone on the spectrum, I'd like to remind everyone that autism is not an explanatory factor in his actions. And that autistic people like my son are fully, fully capable of empathizing with those who were the target of them.



This post was previously published at www.emilywillinghamphd.com

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.

Monday, March 19, 2012

Remember One of Our Own: George Hodgins

Zoe Gross
illusionofcompetence.blogspot.com

Zoe and her father Rob light candles
in honor of George Hodgins.
Photo © 2012 Steve Silberman
Zoe is an autistic self-advocate. She recently organized and led a vigil to remember and honor George Hodgins. She read the words below at the ceremony, which was attended by self-advocates and their supporters -- many of whom had been part of George's life. Many of whom spoke out themselves.

----

Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn't know George, but I can't stop thinking about him. Maybe it's because we have a lot in common -- we lived near each other, we were the same age, we're both autistic, although we led very different lives. I would like to have met George, but I can only mourn him. And I can try to make sure that his story isn't forgotten.

In the wake of this tragedy, I read a lot of articles that asked the readers to imagine how George's mother must have felt. But I didn't see a single article that asked the reader to empathize for George, to imagine how it feels to see your mother point a gun at you. I've seen a lot of people talking about how hard it must be to live with an autistic relative, but I didn't see anyone talking about how terrible it be to die knowing that your parent, who you love and depend on, has decided to hurt and kill you.

Because he was autistic, George is being erased from the story of his own murder.

The story of George Hodgins's death is being discussed and presented as a story of a mother who snapped, and the story of other parents who have felt the same way. It's being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.

When disabled people are murdered by their families, this is the story people want to hear. It's the same story that we saw in newspapers after Katie McCarron was murdered, and after Jeremy Fraser was murdered, and after Glenn Freaney was murdered, and after Zain and Faryaal Akhter were murdered. The story goes like this: it is understandable that someone would kill their disabled relative if they don't get help to care for them.

I don't think this is a true story.

Why is the story being told this way? Because we live in a world that doesn't acknowledge the value of our lives as disabled people. Because so many people in our society can't imagine a disabled person living a fulfilling life, so they don't see the tragedy and the wasted potential when one of our lives is cut short.

As disabled people, we have to take a stand against this kind of thinking. We have to get the word out that our lives matter, that our lives are our own stories and not just the stories of our non-disabled parents and relatives and caretakers. We have to let people know that they are missing part of the story.

Because the story of George Hodgins's murder is also the story of the disabled community losing one of our own. It's the story of the other disabled people who were murdered by their family members, and it's the story of the society that thinks so little of people with disabilities that these murders are all too often justified as "understandable." Most of all, it's George's story -- the story of a young man who enjoyed hiking, who was always looking to learn new skills, who had his whole life in front of him.

Now George is gone, and only his memory remains, and already that memory is being distorted by people who want to tell his story and leave him out. That's not going to happen tonight. We're here to remember the real story.

----

Zoe's words about  George Hodgins were previously published by ASAN, the Autistic Self-Advocacy Network, and at Zoe's own site illusionofcompetence.blogspot.com.

Friday, January 6, 2012

Being the Change We Want

(Or, A Good Dose of Humility Never Hurts)

Kim Wombles
www.kwomblescountering.blogspot.com

I’ll have been involved in the online autism community for three years this March. I’d say the community has changed, but I’m thinking it’s more that I changed over the years. People still bicker about the same kinds of things (some of the people are the same ones who’ve been at it for years), and the divides seem to be more entrenched than ever before, if you go looking in those places. I try to avoid that, now.

Sometimes, when I make the round of blogs, of bloggers posting their deepest feelings, only to be roundly attacked by others, I want to respond, to get into the middle of things. Most of the time, though, now, I don’t. I shrug and move on. I ask myself first what possible good could come out of my investment.

It isn’t that my positions about autism have changed much. I still don’t think vaccines are implicated in autism. I still have a strong aversion to the use of untested and potentially dangerous treatments. I hate to see people throw away precious resources on woo when their efforts, time, and money could be better used. I’m still adamantly opposed to those charlatans who take advantage of parents who will do anything to help their children achieve their potential.

What has changed, though, is how I believe individuals should be approached, how situations should be addressed. Where I once found myself outraged, angered, frustrated and hell-bent on calling out the things I found horrible and the people doing those horrible things, I tread more lightly. I try to avoid being reactionary. Is it really horrible? Are they acting out of malice? Is there a better way to deal with the situation? Where possible, I think avoiding directly rebutting another person’s words and instead presenting the evidence against a treatment is better than directly addressing another person.

It took some hard knocks to come to that realization, but it’s one I’m working on doing. I don’t want what I do to be a reaction to other people. I want it to be proactive and compassionate. I’ve written over the last year about how I regret the way I first approached the vaccine wars. Almost without reservation, I am disappointed in myself over what can be perceived as attacking people personally.

Over this last year, my time as a hospice volunteer has taught me how to just be there for families undergoing the worst times in their lives; I’ve learned how to accept without judgment the way individuals face their challenges. Being in a position where that’s my primary role -- nonjudgmental support -- has made me more reflective of my actions and beliefs. We all do the best we can with what we’ve got. Some of us face the challenges more adaptively. Some of us don’t. Some of us are great at putting on a mask and hiding our agony. All of us deserve respect and compassion as we go through our lives.

And it’s those experiences, coupled with Kathleen’s and my work at the Autism Blog Directory, that have changed how I feel about people on other sides of the “divide.” It’s a divide if we let it be, if we think there’s only one right path, only one right way. I’m tired of the divides, of the us-versus-them approach.

One of the best things I did was get involved in my local community. It meant wading into the local Autism Speaks to do it -- and while I know intimately the objections many in the online world have towards the organization, working on the walk and meeting families who believe a whole host of things differently from me forced me to let go of anger at people who choose what I consider, based on the evidence, to be pseudoscience. I backed up and shut up. In most situations, people don’t need to be directly confronted on their choices; it won’t make them change in the direction the other person wants them to. It simply entrenches them and deprives both parties of a chance for support, for genuine friendship, for growth.

I still write evidence-based pieces, but I refuse to be reactionary towards others in the community. Attacking others just makes their lives all the more difficult, and I really don’t like the idea that I’ve made someone’s day harder, that I’ve hurt someone who was already struggling. Really, the thought that my words could have pushed people further to the edge, deeper into woo, made them more bitter, angrier people makes me ashamed to have written those words, and for those I harmed, I’m sorry.

That doesn’t mean I’ve gone all soft and mushy with no clear positions. There are some things I am certain are wrong. There are people in our online community who I believe do tremendous damage to others and who, I think, do so intentionally with the sole purpose of getting ahead. I think those people are in the minority, though, and most people are doing the best they can. I think there’s a respectful, appropriate way to counter the woo and those who peddle it, and I work harder now to find that way.

Countering, my blog, has absolutely changed in the last 34 months. I think it’s a change for the better, and I know that how I approach things, how I handle adversity will continue to evolve. Do I miss the chances at snark? A little bit, but it’s just not worth it if that snark hurts someone else. My kids are watching me, reading me, looking over my shoulder. They’re out there, interacting with the world, and if I want others to show them empathy, compassion, patience, and acceptance, then I must pave the way by being that kind of person. We must, I think, ultimately be the change we want to see.

Monday, August 1, 2011

I Feel for You

Carol Greenburg
aspieadvocate-ascd.blogspot.com

I feel sorry for those who think autistics have no ability to empathize. In my case at least, Asperger’s left me too vulnerable to the emotions of others.

When I was a little girl, I smiled until my face hurt. I was nowhere near as delighted as the constant smile seemed to indicate, but I was not miserable either. The unrelenting  smile was, I now believe, the product of rigid autistic thinking, which had led me to a false conclusion that like everything else in my world, there was a correct and incorrect path. Blocks must be stacked in a certain formation, every imaginable question had right and wrong answers. By that admittedly skewed, reasoning, the same principal must have applied to emotion. There was one correct emotion: happiness, which was always expressed with a smile.

Other emotions existed, that was irrefutable. Whatever other explanation could there be for tears or frowns? I avoided wearing such expressions on my own face though, because they and the emotions they represented were obviously incorrect. However I couldn’t seem to control the emotions of others, which was maddening, like sudden mind-reading abilities in the science fiction stories to which I  was always so drawn, a terrifying telepathy that inevitably landed protagonists in the equivalent of their planets’  rubber rooms. 

I would not describe this way of thinking as healthy. I wasn’t simply irked when an adult or another child would refuse to comply with my orders to smile, I was furious and terrified and would not, could not, calm down until they did. What complicated matters more then, and continues to complicate them to this day, is my impaired ability to read facial expressions and body language. Like many autistic people, I’m capable of seeing macro-expressions, broad smiles, uncontrollable tooth-grinding rage, but more subtle expressions remain a mystery to me. I still can’t tell if the not-entirely happy person next to me is mourning the loss of a beloved friend, or the loss of a just-manicured nail tip.

Although I’m better equipped to handle all the input as an adult than I was as a child, between the sensory overload of loud music, bright lights, forced conversation (especially that autistic bĂȘte noir, the inescapable natter of small talk), my sensory processing abilities are already taxed. On top of all that, I often feel people feeling at me. Whether they notice my presence or not, I notice theirs, and my ability to process their emotions -- the origin and nature of which I still have difficulty interpreting -- causes me distress.

It’s a mistake to confuse an inability to sense with an inability to care. To the extent that I am able to resonate with other people’s emotions, I care intently. Further, I am aware that I am not aware of what people are feeling and compensate by the seemingly simple but actually complex method of inquiring.

I don’t like to think about the part of my life in which happiness was the only correct emotion. I have never written about it. But I recently had a conversation with one of my son’s teachers that sent chills down my spine. She told me about a little girl with the same diagnosis as mine, Asperger's. Like me, she has always been verbal, but when someone she cares for does not produce a smile that lives up to her expectations she will crawl up on their lap and try to force their lips into what she considers a properly happy expression. I remember doing that .

My autistic son is minimally verbal, but there is no doubt in my mind that his empathy is as powerful of as that of those who can articulate it. He’s been using what words he has to ask me if our cats are happy. He’s been asking his teachers if a particularly close friend of his in school is happy. Not curiously or occasionally, but frantically and repetitively. No amount of reassurance seems to soothe him for more than a moment when he gets into one of these loops. Medication helps; we also have high hopes for social stories. Since we want to teach him that he has some power to influence others positively we make suggestions about concrete things he can do to help. Finally, we emphasize the transitory nature of emotion.

I suspect the notion that whatever is going on in a given moment will last forever is a common autistic fear. I have it, too. So when my son seems to be frightened by his own reactions to others’ emotions, I stroke his hair and I remind him that smiles and frowns are like rain and sunshine. Neither lasts forever. Just when you think the weather cannot ever change, it does.

I have faith that my son will resolve this confusion just as he has conquered other perplexing aspects of a world not tailored to his needs, but he’ll need help. He needs to learn that he does have power, not to change the weather of people’s moods, but to react to them in a compassionate yet not all-consuming way. 

I am working on that skill myself, very slowly improving, but I believe his prospects are better than mine. What I do know from my own experience in this realm, and what I strongly believe when I observe him, is that pushing for greater empathy in an already hyper-empathetic child will not help and might even cause more distress and confusion for him. Empathy he’s got. Boundaries are what he needs. Shoring up some kind of emotional self-defense in one of the most caring children I can imagine, that’s what all of us who love him will spend the next few years doing. As parenting tasks go, I think it beats the hell out of trying to foment empathy where an exhausting abundance already exists.

Thursday, July 8, 2010

The Keeper: A Tale of Late-Childhood Asperger's Diagnosis

Mir Kamin
Woulda Coulda Shoulda (wouldashoulda.com)

For the first time in a very long time, it felt like things were okay. Good, even. Things were going to be great, in fact, and once I got the kids settled in to our new town, new house, new life ... things would only get better.

So there I was in the office of the one and only psychiatrist in town our new health insurance would pay for, who would also see children younger than twelve. My son was only seven, but for the past year he'd done well on an anti-depressant to help control his anxiety. I'd had reservations about medicating him -- of course I did -- but it helped. It helped a lot, actually. All I needed from this doctor was a new prescription for the medication that we already knew was working fine.

I'd brought his medical records and his neuropsych evaluation results. In answer to the doctor's curt questions, I explained that he'd been a colicky baby but then a charming, social, active toddler. By the time he entered preschool he never cried; he loved school, adored his friends, and other than being a little clumsy, and maybe just a little more sensitive than the other kids, he appeared to be perfectly normal. It wasn't until kindergarten that the tantrums began. And it wasn't until first grade that a kind teacher asked us if we'd ever heard of Sensory Integration Disorder, and recommended we have him tested. Testing bore out her suspicions: He had a pretty classic case of SID, combining both hypersensitivity to touch (the slightest brush against him could result in wounded howling of "You hit me!") and large proprioceptive deficits (he struggled with balance and just generally knowing where his body was in space).

I explained all of this to the new psychiatrist. I detailed how we'd tackled the issue on all fronts; in addition to medication for the anxiety, my son had been receiving regularly occupational therapy and attending talk therapy, as well. He was doing better. Combining all of those things together, I told him, he was practically back to the old version of himself, the one who was all smiles. To punctuate my point, my son -- who'd been sitting next to me, fiddling with a couch cushion this entire time -- turned to the doctor and flashed him a wide grin.

The doctor took notes and nodded and asked a few more questions, and then asked to spend fifteen minutes talking to my son. I agreed, but when I didn't move, he added, "Alone." Embarrassed, I headed back to the waiting room, hearing my son launch into a detailed explanation of his favorite Pokemon character as the door closed behind me.

When fifteen minutes had passed, the doctor walked my son back out to the waiting room and asked him to wait for me, then invited me to come back in without him. Back inside his office, the door clicked shut as I settled back down on the couch. "Did you learn a lot about Pokemon?" I asked, trying not to laugh. It was my son's current obsession and I knew he'd given the doc an earful.

"Oh yes," he laughed. "More than I ever knew before! He's quite the charmer."

"Thanks," I said, smiling. "I think we'll keep him!" That had always drawn a chuckle whenever I'd said it before, but the doctor merely made a note on his pad, expressionless. Then he set his pen down, looking up to lock eyes with me.

"So," he said, then. "Your son has Asperger's Syndrome." He said it as though he wondered why I hadn't told him.

"What?" I said, sure I'd misheard. He was still looking at me, taking in my flustered response. "He ... no he doesn't," I continued, briefly wondering when it had gotten so warm in his office. "He has Sensory Integration Disorder. He was just tested last year. That's all. Sensory stuff. He's not autistic."

"Why do you say that?" he asked me, cocking his head to the side. I stared back at him, baffled into silence. "I mean," he continued. "You seem ... almost offended."

"I ... uh ..." I groped for words. "I guess I am a little offended?" It came out as a question. I tried again. "You just spent less than an hour with him. His testing last year didn't say anything about that. He's extremely verbal. He's extremely social. He's never had an issue with eye contact. He has tons of friends and plays well with others. He's incredibly compassionate, always the first one to run over and ask if you're hurt or get upset if someone else is upset." The doctor was still just looking at me, waiting for me to run out of steam. "He's very social," I repeated. "Aren't people with autism ... you know ... not?"

"I haven't fully evaluated him, obviously," he said, "but I've seen kids like him a lot. We call them Little Professors. It's a kind of high-functioning Asperger's where yes, they don't have problems with eye contact and they love people, but they talk like brainy old college professors in spite of being fairly immature in other ways. Kids like him care when you're upset, but they have no idea why you're upset. They're rigid and specific about how they want things to be, though, which is the most common source of the kinds of meltdowns you describe him as having." I tried not to gape at him. Fifteen minutes. Fifteen minutes this man had spent talking to my son, and he claimed that trumped the extensive testing he'd had the previous year? Oh, I was starting to hate this man and his smug little theory.

"He's okay right now," he continued, as if he hadn't noticed the horrified look on my face, or just didn't care. "But it's going to get worse before it gets better. I'm telling you this not to scare you, but to prepare you. It's already starting to happen -- his peers are maturing in ways which he is not, and it's causing some social tension. In first, second, maybe even third grades? It's not a big deal. But in fourth and fifth grade you'll see the gap become a chasm, and relationships will become increasingly difficult for him. Middle school is usually the worst for kids like this. It will be bad, and you'll have to really be vigilant in making sure he's okay. For kids with Asperger's who are socially inclined it's actually worse than for the kids who are happy on their own, because they want to be part of the gang and they just ... can't. You need to be prepared for that."

We looked at each other, across the few feet separating his chair from the couch where I sat, and anger burned brightly on the edges of my vision, blurring and narrowing my gaze, which after a few seconds of silence I purposefully shifted to a point on the wall behind him.

"Okay," I finally said, in a tone that no doubt suggested it was not even a little bit okay, "can you write us a new prescription or not?"

"It's not my intention to upset you," he said, confused. "I'm sorry if I did. I thought you knew." My reaction was unexpected, and he was clearly not a person given to comforting others.

"I know what's on the paperwork I handed you," I snapped. "There's nothing about Asperger's there. This is the first time I've heard it even suggested. It's been kind of a long day and I just want to get his prescription and go home if there's nothing else." I realized I was trying very hard not to cry.

The doctor nodded slightly, wrote the prescription, and told me he'd see us again in a month, then we could go to every three months after that. I nodded and thanked him and all but stormed out of his office.

At home, my husband patiently endured my resultant diatribe. Because how dare he and who does he think he is and what kind of mind game is he playing here? I was furious. I never wanted to see him again, him and his smug, split-second diagnostic powers. What a jerk. As if my son didn't have enough on his plate.

But he was the only doctor our insurance would approve who could monitor and prescribe my son's meds. So we kept going to see him.

That first year, I kind of set my jaw and endured each appointment. Everything was fine, yes. Same as before. New prescription, please.

The second year, my son struggled. We changed meds. We added another med. We went back to the original. Every appointment seemed to find me detailing some new problem or other. Compulsive behaviors cropped up. His temper flared. His "filterlessness," as we'd always called it, had him blurting out more and more inappropriate and even offensive things. The anxiety was back. My memory of our initial meeting with "that stupid doctor" poked at my increased worrying with more and more insistence.

As we headed into the third year -- which was now my son's fourth grade year -- everything seemed to come to a head. My son was getting in trouble at school, friends were telling him they didn't want to play with him anymore, and he was so anxious I couldn't decide who was more miserable -- him or me. At our next regular med check I sent my son back to the waiting room for a minute, and then I turned to the doctor. "Do you remember our first appointment?" I asked him, before he'd even closed the door. "Do you remember when you told me you thought he has Asperger's, and I thought you were nuts?"

"Yes, I do," he said, calmly, settling into his chair.

"I think it's time for you to say 'I told you so,'" I said, trying not to choke up. "He just ... it's like all his friends are growing up and he's still five. He can read on a high school level but he can't cope with the most basic of social interactions without ending up convinced that everyone hates him."

To his credit, he never said "I told you so." And it probably won't surprise you to hear that these days I find myself rather fond of the no-nonsense doctor, in an odd way.

We had the evaluation, and the Official Diagnosis, and the countless IEP meetings that followed. As I write this, my son is about to start fifth grade, and I pray daily that it will be an improvement over fourth, which was truly the hardest year of his life thus far. I also know that it might not---probably won't -- be. I know that we will likely opt to homeschool him through middle school. I know we have miles to go before he will feel truly comfortable with who he is.

But I also know that that the more we embrace exactly who he is, the closer he gets. Since becoming "official" we've talked about it a lot, and read books together, and made an effort to meet fellow Aspies. This past year brought the unexpected gift of a best friend who is "like me, Mom!", which had the incredible side benefit of bringing me a fellow local mom who Gets It. We can watch our boys together and neither of us needs to apologize or explain away their quirkiness; they're just our boys, and we love them.

I'm not going to lie; I still often think that if I had the option to take this particular cup from my son, I would. I'd rather he be dumb but happy, I've confided to just a few trusted loved ones in the past, than have this amazing, brilliant mind that so badly wants to connect with other people but often can't seem to decipher them. I know, I know that he will find his way and be an amazing adult, but to watch him now, while it's so hard for him ... it's heartbreaking. Someday all that is hard to remember when today so often takes all your patience, you know?

Talking to Aspie adults has been a lifeline in keeping my hope afloat. While the psychiatrist was quick to tell me "it gets worse before it gets better," it's those folks who've walked out the other side who can actually tell me about the "better," and assure me that it's real. Every "I wouldn't want to be neurotypical" comment is a gem I hold onto and savor.

I can tell you the exact moment when I knew he'd be okay. We'd gotten together with some folks the kids had never met before, and they brought their kids, too. I happened to overhear my son, just a little while into the visit, saying, "I have something called Asperger's Syndrome. So, you might think I'm a little weird. That's okay. Sometimes I don't realize I'm talking a lot, or I'll say something rude by accident. Just let me know if I do. I really want us to have fun today." The other child took this little speech in stride, and they ran off to play together. No one else had heard the exchange, and I smiled to myself, even as I blinked back tears.

I think we'll keep him.