Introversion and Autism

Here’s an e-mail I sent to the author of a book I read:

In your book The Hidden Gifts of the Introverted Child, you describe autistic people (I use that term broadly, including Asperger’s Syndrome and PDD-NOS) in a way that is, in my opinion, damaging and discriminatory.

I am autistic. I am also introverted. I don’t think I have heard of a single autistic who isn’t introverted. Introversion is a near-universal characteristic of autistic, though of course not all introverts are autistic. Autistic people also have a number of other traits, which are not any better or worse than normal, just different.

You describe autistics in the following manner:

Autism and Asperger’s Disorders. These syndromes reflect a cluster of symptoms that include problems in communication and relating to others, and the display of repetitive behaviors. In the film Rain Man, Dustin Hoffman portrayed a character with severe autism. Autistic children lack age-appropriate friendships, empathy, and an interest in sharing and communicating with others. However, they may have great gifts in specific areas, such as in sequencing numbers and visual processing. Asperger’s Disorder is diagnosed when the child is at a higher level of functioning. Studies indicate various brain areas that are affected, but as yet there is little certain about the causes or the cure for these conditions. Because an introverted child may seem disinclined to socialize, parents may suspect autism… But introversion and autism are very different issues. Introverted children have normal social relationships and form close attachments with parents and with peers. Introverts do not exhibit the repetitive behavior, such as rocking or head banging, that characterizes autism. Nor do innies display the uncanny ‘savant’ quality of, say, being able to recall random lists of numbers that sometimes signals these conditions.

Firstly, it seems like you are echoing medical terminology. I don’t think in a single instance you described introverts as ‘displaying’ some kind of distinctive behavior.

Empathy is used by autism ‘experts’ in a very distinctive, and in my opinion inaccurate, manner. Autistic people care about other people, it’s just that other people don’t make sense to us. At one point in your book, you say:

Right-brained innies may have a high emotional quotient, or ‘EQ.’ They can imagine themselves in another child’s shoes. This is called having empathy.

That kind of ‘empathy’ is based on the assumption that others think like you. I used to think other people thought like me, and as a result most people were completely incomprehensible to me. It was only when I realized that I’m autistic, that my mind is actually different from others, that I began to get some real understanding of others. I’m surprised that a person with a minority temperament would actually think this kind of empathy is really useful. No doubt you’ve had extroverts acting like since they don’t like being alone, you must be dying for company as well. That is ‘empathy’ as you describe it. It is only effective if you are interacting with someone who is very similar to you – even so, because no one is exactly the same, this kind of ‘empathy’ will cause misunderstandings.

Also, I’d like to point out that autistics don’t have some kind of deficit in social skills. We are simply different. I’ve found that non-autistic people have, if anything, more difficulty understanding autistics than we do them. This is not because of some kind of deficit, simply less practice. Only about 1 out of a 100 people are autistic. That means that non-autistics only rarely meet autistic people, while autistics are constantly meeting nonautistic people. In addition, nonautistics hold the power in society. The oppressed group generally understands the oppressors better than the oppressors understand them.

I do not have the need for interaction that most people do. In fact, I find interaction tiring. Is this really different from introversion? I have read that introverts find interaction tiring and need alone time. Decreased interest in interaction seems therefore to be a typical trait of introverts, though more extreme in autistics. Also, decreased interest in interaction is not synonymous with not caring about others. I care very intensely about other people. I love my parents and younger brother very deeply, as well as my pets and my autistic friend. I also care, on a more abstract level, about all the children who are suffering because they are being told that who they are is not lovable and they must become someone else. You describe that problem regarding forcing extroverted behavior on an introvert. Autistics also experience this, often more pervasively.

One thing I’d like to mention is that since many autistics have an on/off tendency in various areas, they may not be recognized as introverts. Rather than being quiet until they warm up and then becoming interactive, an autistic person may jump into interaction, chattering away eagerly until the interaction is over. Conversely, their rest time is longer. This is just because autistics focus intensely and are slow to shift focus. I may interact happily in a party, only to need to spend the next day at home interacting only with my pets. (You say introverts do well with pets. So do autistics, especially with cats. In many ways, autistic people are like cats. I find it much easier to understand my cats than many people.)

Many traits you describe in introverts are also autistic traits. Autistics have similar patterns in memory as you describe – my memory is highly associative, and if the question doesn’t bring up the right associations I don’t remember the answer. Autistics are picky eaters for some of the same reasons you describe in introverts – increased sensitivity to taste and smell, not noticing hunger, etc.

You describe introverts becoming rigid under stress. Autistics who are under constant, intense pressure (as are many, by well-meaning parents and others who want them to function) become very rigid and black/white in their thinking, this is then taken as an inherent part of autism. If they are given less stress, their thinking ‘magically’ becomes more flexible.

I have seen many books, like yours, which advocate acceptance for a certain mild difference while fervently distancing that difference from other related traits which they consider ‘disorders’. It’s an awful thing to push down others in order to get acceptance for yourself. I try to accept all kinds of people. You should, too.

About the Author: Ettina is a young autistic woman who works to make our society more accepting of diversity. This piece first appeared on her blog, Abnormaldiversity, and is reprinted here by permission.

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Asperger’s and Relationship Counseling

One of the frustrating things I encounter in my work is witnessing the damage done to clients (and to their relationships) by well-meaning therapists who believe Asperger’s and relationships are incompatible.

I know, you think I am exaggerating. Really, though, people do think this.

Consider a client I’ll call Eloise, who came to see me in a “last ditch effort” (her words) to save her relationship. Having already visited two couples therapists for help in understanding how to relate to her Aspie husband, she was in the process of resigning herself to the “truth” they had shared with her: her relationship could never meet her emotional needs. Her best bet would be to reframe her relationship as a platonic partnership, and to get her emotional needs met elsewhere. The ideas of knitting clubs and online forums had been proposed, and Eloise was in a state of panic.

After offering this brief history, Eloise stated her purpose in seeing me. She wanted help in moving through the grieving process. She needed to mourn, she said — mourn the normal relationship she would never have. She wanted to know if  I could help her with this grief work, so she could move towards acceptance of this stunted marriage. She couldn’t leave, she explained, because her husband was a wonderful person, though sadly therapists (and books!) had revealed that he was incapable of connecting to her emotionally.

In responding to Eloise, my first task was to breathe through my outrage. The two therapists who had offered Eloise this glimpse of her marital destiny had not even met her husband. Both had “comforted” her by explaining that his withdrawal and disconnectedness had nothing to do with her — rather this was his neurological disorder at work, and nothing could fix it. Beyond the irresponsibility of this crystal ball therapy, their predictions made little sense given recent research on brain plasticity. (See this great TED talk on the subject at http://www.ted.com/talks/michael_merzenich_on_the_elastic_brain.html for a brief introduction.)

The truth is that Asperger’s, and its impact on relationships with self and others, is poorly understood, especially by many clinicians. And certainly no clinician should ever give a prediction for an individual’s lifelong functioning, especially if that person has never been evaluated. Aspies and their partners come to therapy looking for tools and answers, and are often instead given prescriptions for hopelessness. It’s one thing to talk conservatively about treatment goals; it’s another thing to throw out goals altogether.

Therapists often tell clients married to ASD adults that their partners cannot feel empathy and cannot truly love. Perhaps the reason I take such exception to this kind of dangerous feedback is that it’s simply not true. All of my clients feel empathy, and all are capable of love. In fact, many times my Aspie clients are shocked to find that their partner’s faith in their love and loyalty can be compromised by a forgotten good-bye or missed eye-contact. One Aspie partner remarked: “How can our whole relationship hang by a thread? It makes me afraid to open my mouth for fear I’ll accidentally destroy my marriage.” Of course, this anxiety furthers ASD clients’ reluctance to establish connection, which furthers their partners’ feelings of being ignored or neglected.

Partners with Asperger’s have often spent a lifetime making unpredictable relationship mistakes that carry real repercussions. When the probability is high that your efforts to connect will be met with rejection, it’s awfully hard to justify the logic of continuing to try. Successful relationship therapy involves identifying triggers so that both partners can work towards feeling safe together. This is the foundation of building connection.

Clinicians are trained to use good communication to build safety, rather than building safety to facilitate good communication. I’m proposing the notion of working together to establish safety first. This is crucial for creating a context in which people with Asperger’s can experiment with being vulnerable, and non-Aspie partners can experiment with interpreting behavior in brand new ways.

About the Author: Cary Terra, LMFT, is a Licensed Marriage and Family Therapist in private practice in Seattle, Washington. She specializes in working with adults with Asperger’s, their partners, and their family members. This piece first appeared on her blog, Aspie Strategy, and is reprinted here by permission.

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Asperger’s in Adults and Empathy

 

A regular occurrence during sessions in my practice is my encountering of what I call “autistic empathy.”

An oxymoron, you say?  I don’t think so.  In fact, this happens so often during sessions that I’ve begun to think of Asperger’s as a disorder often characterized by too much empathy, not a lack thereof.

Before I get started on this idea — one I expect will be viewed with skepticism, at best — let me describe what happened during one such session, one that illustrates my point.

My client — let’s call him “Giles” — and I were discussing the use of gaming as a self-soothing tool for otherwise overwhelming emotional states. Giles used few tools of escape, and we both agreed that his immersion in the world of online gaming came with a price.

At some point, we compared his gaming to other self-soothing tools, and I mentioned my tool of choice: doughnuts. In response, Giles began to make a case for the harmlessness of doughnut overuse. After a couple of minutes straight of his explaining why I should not feel guilty about my doughnut habit, I realized he was concerned I might have grown embarrassed.

I stopped him. Could this be right? Indeed, it was. Giles, this adult with Asperger’s, had sensed I was embarrassed, and was doing his best to make me comfortable. There was no other way to explain it: this was empathy.

In fact, many clients have demonstrated the same level of empathy in myriad ways during sessions. I see it when they tear-up describing their pet’s pain. I see it in their silent withdrawal when a parent is unfairly raging. I see it in their pull towards social justice. I see it in Asperger’s men’s groups, during which they are gentle and supportive of each other in ways that violate male social norms.

In fact I often wonder if the withdrawal adults on the spectrum resort to is emotionally necessary. If they feel others’ pain acutely, and on top of that, often lack the social skills to offer “appropriate” comfort, what are they to do? Withdrawal and distancing become more than relating styles: they become necessary tools for self-preservation.

Picture the plight of the teenager on the spectrum who comes home after school to find parents who are quietly angry at each other. Because he is sensitive, he knows something is wrong. His body is on alert, and he wants to help. Because he is empathic, he would like to offer comfort. However, because he is bright and learns from patterns, he knows that historically, he has said the “wrong” thing in these situations, which has made things worse. He determines, quite logically, that the best thing he can do is go to his room and put on an audiobook. Both parents notice this, and note how little he appears to care about anyone but himself.

Adults on the spectrum often over-empathize. To feel deeply, and fail miserably when they try to offer comfort, causes more injury than can be tolerated. Retreating offers solace — and confirms their image as non-empathic.

“Autistic empathy” is a powerful experience, and leaves the adult with no way to manage the strong emotions of others, which resonate so deeply.  Our job in relating to them is to look past the veneer of calm or indifference with quiet curiosity, to resist the outrage we feel when someone displays so little outward reaction. Partners who do this are met with a rich world of sensitivity and attachment — the world they sense but cannot readily see.

About the Author: Cary Terra, LMFT, is a Licensed Marriage and Family Therapist in private practice in Seattle, Washington. She specializes in working with adults with Asperger’s, their partners, and their family members. This piece first appeared on her blog, Aspie Strategy, and is reprinted here by permission.

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Can You Read People?

Really look at this chart. Would you be able to read emotions off it?

Reading people is one of the things that Roger will openly tell people that he cannot do. He can’t tell you if someone is mad, happy, sad, or scared just by looking at them. He has to be told. Well, that is usually the case. If he is around people a lot, he can sometimes figure out what is going on, but not always.

When his brothers and sisters start to get annoyed with him, he doesn’t realize they are getting annoyed until they start screaming. Then he backs off. This weekend my husband had a bad week, so he wasn’t in the best of moods. The other kids picked up on it right away. Not Roger. Not until someone told him did he get it.

A case where he has noticed would be with me. I have a back injury that causes pain, and sometimes it can get pretty bad. Roger has figured out that if I am quiet and moving slowly, I hurt. Now, he still has to ask, but hey, at least he is picking some of it up. He has even told his stepbrother that if I’m moving slowly, it hurts and to stay away.

I think this may be where some of the misconceptions about feelings and autism come from. Just because someone cannot tell by looking at someone how they are feeling that does not mean that they themselves do not feel. Or that they do not have empathy. Look at the charts they give kids to teach feelings. They always have over-exaggerated faces that no one has in real life. Once Roger is told how someone is feeling, he usually understands. He does have some trouble figuring out his own feelings, but just because he can’t always put a name to them doesn’t mean he feels nothing.

About the Author: Kitty Kat and her husband have four children, including her son Roger, who has autism. This piece first appeared on her blog, No Guile: Life and Other Stories from Autism, and is reprinted here by permission.

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If I am Only For Myself, What Am I? Tikkun Olam, Asperger’s, and Haiti

If I am not for myself who will be for me?

If I am only for myself what am I?

If not now when?

– Rabbi Hillel

It is a Jewish tenet of faith to make the world in which we live a better place. It is called tikkun olam.

Don’t you just love those know-it-alls who say that persons with autism are incapable of caring about others? That those with autism spectrum disorders are so self-involved they do not know that others even exist, that others have feelings, and that others have desires or needs? Actually, I would say that they are describing the most materialistic, self-indulgent people in our modern consumer-driven society. I would also hazard a guess that these materialistic narcissists are not persons with autism.

I don’t know where it comes from that the professionals who work within the autistic community come up with these hard and fast rules. There is such a varied spectrum of characteristics that if you know one person with autism, you know one person with autism. You know how autism affects one individual, and that doesn’t necessarily apply to anyone else on the spectrum.

I can tell you that my Aspie boys spent this morning loading and packing medical supplies for Haiti. A few weeks ago, they loaded medical supplies for Africa. Last week, Collegeman gave away hundreds of dollars of his book money to Save Darfur (we had to have a talk about that). Highschoolboy likes when I give to the ASPCA and Smile Train. Charity is a way of life for us.

This morning was a great success. Since Collegeman and Highschoolboy had just been there a few weeks ago, the director was well aware of who they were. And since the boys were very familiar with the layout of the warehouse, they were the champs. In fact, there were teenagers there who would turn to Collegeman and get him to help them. We think it’s the facial hair. I understand one of them even called him “sir.” Now that’s cute. Collegeman used to do that to teens with facial hair when he was in middle school, too.

The best part was that, in the middle of the tumult of packing the medical supplies, Collegeman had a discussion with the director of the program about chaos theory, how it applied to what they were doing at the moment, and how, if there were fewer volunteers, they would be more efficient. Leave it to him to try to figure out a way to make things better and to throw a scientific conundrum into the middle of it. (I told you he channels “Sheldon” on a daily basis.) She responded that it was okay, and that she liked all the people, and that she could handle the hubbub. Never heard if he let it go at that; I’ll bet he didn’t. I am sure hubby either intervened or she gave Collegeman another project to do to get him to shift his attention.

I have to tell everyone that Collegeman makes me proud. He may not understand not to give all his money away; it left him short of cash for his books. Well, not really, I bought them for him. He was supposed to have used the money from the summer for his books. I’m trying to teach him a little about taking responsibility since so many of his peers have to work to afford college. I wanted him to understand that his money has to go for some things associated with school, too. But how can you punish him when he gave his money to charity? He didn’t spend it on a video game; he gave it away to save lives. So I let Collegeman earn money doing chores over vacation to work off his books.

I am also not allowed to throw away any old clothes. Both Collegeman and Highschoolboy know about the local community center that takes old clothes and gives it to those less fortunate. During high school, Collegeman used to try to collect food for the food bank. So we also have to give them food periodically. If there is a food drive, clothing drive, money drive, both of the boys are participating. Both understand their obligations to the world at large. Both know that they are members of society at large and that membership comes with obligations.

I wonder how many neurotypical people, the ones psychiatrists say are just fine and without issue in society, spent their three-day weekend helping others. I have decided that these psychiatrists are not going to define my children as to who they will or will not be. It is a Jewish tenet of faith to make the world a better place. We call it tikkun olam. I am going to let this righteous path define the boys. I am going to let Rabbi Hillel define the boys. Then, ultimately, the boys can define themselves.

About the Author: Elise Ronan is the mother of two young men with Asperger’s Syndrome. This piece first appeared on her blog, Raising Asperger’s Kids, and is reprinted here by permission.

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On Eustacia Cutler and Cutting Wide

“Hope is different than control. It’s not Hallmark cards — oh, it’s all going to be all right. It’s really a bet. You check out the odds, and you place your bet. That’s how I describe hope. And I bet on Temple’s growth.”

I found this picture on the web a while back, Eustacia Cutler, holding her daughter, Temple Grandin. These women are old enough to be my Grandmother, and Mother now. I am this generation’s Eustacia, “the Autism Mom,” with all the positive and negative implications that title carries. Eustacia Rebelled enough to get to her daughter. She found the Light of hope within Temple, bet on it, and won. She cut the path for me. For my sons. For us.

And I have to wonder, if she went so far, if she gave us so much Light, what can I do? What should I do? If the path has been cut, well then, I want to make it wide as the sky. I want a shining silver machete in my hands.

Cut away the disbelief, Mothers. Your child is worthy of your every hope.

Cut away the blame, Mothers. Your child is nothing to be ashamed of.

Cut away the stigma, Mothers. Your child is not cold or absent.

Cut away the fears, Mothers. Your child needs courage as an example.

Cut away the stereotypes, Mothers. Your child is not Rain Man.

Cut away the lies, Mothers. Your child is capable of empathy.

Cut away the hate, Mothers. Your child deserves unconditional love.

Cut away the dark, Mothers. Your child, and you, should live in the Light.

Cut away at the path, Mothers. Our children need freedom to be who they are.

I am asking my children to respect you, and yet, they are not respected. I am asking them to be brave, to face their challenges, and yet, the world refuses to face it’s ignorance. I am asking them to be everything within themselves, and yet, it is still not permissible to be Autistic, even generations after Eustacia Cutler and Temple Grandin cleared the way.

I will go further, wider, and I will circle back. I will cut a path to your door, world. Place your bets on that. When you hear me tapping with my machete words on your door, let me in, and if you let my sons in, and see them, know them, love them for who they are, you, world, will win too.

About the Author: Rebel Mommy is the mother of twins with autism. This piece originally appeared on her blog, Raising Rebel Souls, and is reprinted here by permission.

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Autism Does Not Cause Killer Kids

Gevin Prince was fourteen years old.  Brown-haired and big for his age, Gevin lived with his great-grandmother and grandmother in Douglas County, Georgia, a suburban area just west of Atlanta.  His grandmother said that when she told Gevin he couldn’t use the computer, Gevin grabbed a knife and stabbed his great-grandmother thirty times.  When police arrived, Gevin was outside the house holding a samurai sword and a BB gun.  After a standoff, police subdued Gevin with a Taser.  Inside the house, they discovered that the great-grandmother had also been stabbed with the samurai sword and the grandmother, seriously injured, had locked herself in a bathroom.

Grandmother Laura Prince told a newspaper reporter that Gevin has Asperger’s.  The Atlanta paper reported:

Laura Prince previously told The Atlanta Journal-Constitution she had reared Gevin and tried to get him help for mental problems.  She said Gevin has Asperger’s syndrome, which is similar to autism, and the older he got the more he “acted out” physically, eventually prompting 911 calls to authorities.

Gevin’s great-grandmother Mary Joan Gibbs, 77 years old, died.  His grandmother, 55, is seriously injured.  Gevin, now 15, is in the Douglas County jail facing murder and aggravated assault charges as an adult.  The District Attorney is sending the case to a grand jury for indictment.

This is a tragedy.  This family is suffering terrible pain.  Clearly, they needed help.  Maybe Gevin didn’t have the right supports for his needs.  Maybe he had other mental health issues.  Maybe he had no medication, wrong medication, or too much medication.  Maybe he had a troubled family, a troubled past.  Maybe he was just a troubled teen.  I don’t know.

BUT.  Autism does not cause children to murder.

If families think that, if reporters think that, if the public thinks that, we are treading a dangerous path for our children, individuals, and families affected by autism.

People don’t need to be scared of autism.  Parents shouldn’t believe that a diagnosis of autism means a tragedy awaits them.  They don’t need to be frightened into thinking that their child is a cold, hard-hearted villain who will snap at the next “no.”  They don’t need to lie in their bed awake wondering when their child will murder them.  Teachers shouldn’t be scared to teach our kids.  The government doesn’t need to get the idea that people diagnosed with autism should be institutionalized for public safety.  Our neighbors don’t need to worry when our children play with theirs.

Persons diagnosed with autism have problems with social interaction, communication, and repetitive or restricted behavior and interests.  That’s it.  They don’t lack empathy.  They aren’t robotic.  They don’t reject people.  They aren’t emotionless.  They don’t have an inability to relate to people.  They don’t have a tendency to be violent.  None of  that.  They may find it difficult to follow conversations.  They may have challenges with nonverbal language.  They may not like crowds.  But persons diagnosed with autism are PEOPLE, not natural born killers.

I’m not saying all persons with autism are angels.  Just as some people are ornery, so some people with autism are ornery.  Just as some people resort to violence, so some people with autism may resort to violence.  But it ain’t the autism that makes it so.

Autism does not cause a person to kill.

Its corollary is true as well.  Autism does not cause a parent to kill his child with autism.

Yes, this family suffered a devastating event.  They needed help.  They needed psychological counseling.  They needed therapy, medication, respite, and family supports.  They needed a support group.  They needed ideas and alternatives.  They needed to be weapon-free, or have an extra computer, or management for dealing with limits, or information about how to transition kids with autism, or how to help a troubled child.  But autism did not cause Gevin to kill his great-grandmother and assault his grandmother.

The autism community needs to do a better job getting information about autism supports out to families.  Not just information on websites, but also straight in the hands of pediatricians and families.  We need to do proactive outreach to families dealing with an autism diagnosis, finding out what issues they’re having and why.  We need to focus on affordable therapies, respite care, and parenting practices, not just on research about causes.  We need families to know that 911 is not the number to call when your child has autism. It’s the number you call for public safety, not for mental health support.  Police do not have the role of figuring out how to best help your child and your family.  They have one decision: do I arrest your child or not?  Families need to know WHO to call when they need help.  We need to do a better job supporting persons with autism and their families in daily living, in stress management, in family dynamics, and in problem resolution.

And people need to know: Autism does not turn kids into killers.

About the Author: Brenda Rothman, the mother of an autistic son, writes about autism, parenting, and shoes on her blog Mama Be Good http://mamabegood.blogspot.com/. Brenda is also on Twitter @mamabegood, where she enjoys margatweetas, and on Facebook at https://www.facebook.com/mamabegood, where she spills coffee creamer.

All images are the exclusive property of Brenda Rothman and Mama Be Good and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Brenda Rothman at Mama Be Good. © 2009 – 2012 Mama Be Good.

Autism Does Not Cause Killer Kids first appeared on Brenda’s blog and is reprinted here with permission.

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A Thin Line

Jack picks up bits of banana muffin, brown crumbs falling onto his red sweatshirt.  He tilts his head to the side, chewing, looking off.  The sun is shining into the breakfast room, but still the tile must be wedged against the cold ground.  I’m weighing the pros and cons of sheepskin versus fur-lined boots because, even though I’m wearing unfashionable but rigid Skecher Viagras, my feet are still cold.  Dang cold.

After clicking on a few laptop keys, I read the headlines.  Earthquake and tsunami hit Japan.  Over on Facebook, friends leave statuses about the devastation and the horrific videos.  On Twitter, messages fly about relief efforts.  I close the laptop with a click.  Jack stops chewing.  “Why?,” he asks.

I won’t be watching the videos of the disaster in Japan.  I won’t be watching the news.  It’s not that I have no empathy.  I have too much.  When I watch film footage of disasters, my feelings overwhelm me and have nowhere to go.  I feel anxious, sad, distressed.  My heart drags down, my muscles burn, and my skin feels raw.  I see the people and think, I am you.  I can see me in your shoes, devastated, wrecked.  I feel for you.  I feel with you.

My heart has a very thin line between me and you.

It’s the same reason I don’t watch local news.  The waves of tragedy, the lives lost every day on this planet are heartbreaking.  I have to find my balance.  I have to heal my heart, protect it.  I have to actively direct it to the exuberant, the blissful, the carefree.

I have to breathe.

However, I can read the accounts of the Japanese disaster.  Reading the tragedy lets me process the news, without being overwhelmed.  Does reading go through a different neural pathway?  Does it slow down my emotional reaction?  Does one processing mode at a time (language processing) help, rather than several (imagery and sound) modes?  Is it that I can stop when it gets too much? I don’t know.  I found the one that works for me.

And, naturally since I am pondering input, the brain, and emotions, I think of my son.  Is this what it’s like for him?  Not just processing sensory input, but information and everyday experiences.  Is this why he likes to read books, but not watch movies?  Is this why he likes me to retell stories of his own emotional events over and over?  Is this why when he experiences something frightening, he immediately wants to play it out over and over?

There’s a very thin line between our own emotions and empathy.  I hate reading that children with autism lack empathy.  It drives me batty.  Because it makes them sound like they don’t care about others.  That they lack something intrinsically human.  That they tune out others on purpose.  And none of those are true.  None! N.O.N.E.  Children with autism are often overwhelmed by emotions.  They have trouble sorting out their emotions and trouble expressing them.  When you can’t sort out your own feelings in your body and your own emotions, and you’re can’t even tell someone about it, you certainly don’t have time to look at someone else.  It’s not lack of empathy, it’s a lack of task management.  It’s “I’m overwhelmed!”  It’s “I’m feeling too much!”  It’s “I can’t process it all!”

Original experiences can overwhelm Jack.  But we’ve found a way for him to process them emotionally, to make sense of his world. It’s not just soothing and comforting him at the time of a scary moment.  It’s finding a way for him to integrate the experience, to understand his reactions, and to recover from the trouble.  The time Aunt Jenny foofed a trash bag?  Yep, that’s a story and a game.  The time cousin Nubar zipped the seatbelt fast?  Yep, story and a game.  The time we went to Great-Grandpop’s funeral?  Story and game.  The time Jack heard a funeral siren at the playground and all the kids yelled, Somebody’s DYING!  Definitely a game.

You and I find different ways to process emotions, but we do it mostly through language.  Through talking with each other, writing each other, reading each other’s words.  It’s hard for us adults to remember that kids, typical kids and our kids with autism, don’t integrate experiences through talk.  They integrate experiences through play.  Through recreating the event with stuffed animals or dolls.  Or with each other.  Through a retelling of the story over and over.  Kids feel a loss of power and control when they go through a frightening event.  I’m not talking specifically disasters.  With our kids with autism, frightening can be a plastic bag flying through the air, a specific noise that bothers them, or talk about death (see previous foofing, zipping, and dying).  When kids feel a loss of power, playing lets them regain power over the event, so they can integrate it into their file folder of experiences.  Playing gives them power.  It’s why Jack tells me “You be Jack  and I’ll be Aunt Jenny foofing the bag.”  It’s why Jack tells me “You be Jack and I’ll be Nubar zipping the seatbelt.”  Being in charge of the scariness through play gives him a way to process and reprocess, to understand what happened and why, to figure out his role in the event, and to sort out his reactions.

I won’t be watching what happened in Japan.  But my heart goes out to those in Japan and to everyone with family or friends there.  I pray for their health, safety, and quick recovery.  I hope they’ll be able to rediscover bliss soon, to breathe, … to play soon.

About the Author: Brenda Rothman, the mother of an autistic son, writes about autism, parenting, and shoes on her blog Mama Be Good http://mamabegood.blogspot.com/. Brenda is also on Twitter @mamabegood, where she enjoys margatweetas, and on Facebook at https://www.facebook.com/mamabegood, where she spills coffee creamer.

All images are the exclusive property of Brenda Rothman and Mama Be Good and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Brenda Rothman at Mama Be Good. © 2009 – 2012 Mama Be Good.

A Thin Line first appeared on Brenda’s blog and is reprinted here with permission.

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Autism and the Big Heart

A game of toy bowling at home has gone awry and Jack is in tears.

Really, he’s tired and hungry.  Though he doesn’t think he’s either.  When I say he is, it makes him angry.  I understand.  It would make me angry if someone said that to me while I was upset.  Completely invalidates my emotions.  So I try again.

Me: I know you’re upset.  Listen, your pizza is still baking, but let’s get you something to eat before that.  You wanna try a hot cross bun?

We were in the supermarket bakery yesterday when we spotted them.  “HOT CROSS BUNS!,” I shouted to Jack, a few steps behind me.   We’ve been singing the song and  I can’t believe someone makes them! And that they’re in our supermarket!

Jack: Really? Hot cross buns?
Me: You wanna get them?
Jack: Sure!

They look different than I imagined.  The bun looks fruited and the cross is white icing.

Back at home, Jack refuses offers of hot cross buns for snack or dessert.  I’m a little puzzled, but attribute it to tummy troubles or just not ready yet.

So now that he’s having a hard time at bowling, I try again.

Me: You wanna try a hot cross bun?

Jack’s head is down.  When he looks up at me, his brown eyes are filled with tears, his mouth frowning open in a cry.

Me: Aw, sweetie!  What is it? You don’t have to eat them if you don’t want to.
Jack, sobbing : It’s the cross!

Oh, the cross!  Jack loves crosses.  The whole church thing, really, but especially the crosses.  We’ve gone to churches, gift shops, bought “plain” crosses and crucifixes that he can hold, set up a toy church with a cross on it.  He loves it all, the mass, the details, the words.

Of course he doesn’t want to eat a cross.  My son has such a big heart.  He wants to keep things that he loves, not EAT them.  He was horrified at the dog-shaped cake.  Why would anyone want to eat a dog?!  Even a fake dog?

Jack believes everything has feelings.  Of course people.  Of course animals.  But every thing.  Even trees branches hurt when they are cut.  Even ice feels pain when it is broken.  Even water is saddened that it is being tossed over a high edge to fall way down below.

My little animist.  And who am I to argue.  Because he might be right.

Why?  Because I’ve always been the one with the huge heart.  The one who cried at wandering cats, at orphaned ducks, at getting rid of stuff.  People have tried talking me out of it because it looks like I’m suffering.  But my empathy is my gateway to connection.  It has allowed me to understand people.  To feel for those less fortunate.  To want to help.  And, most importantly, to really stand in my son’s shoes and see the world the way he sees it.

Yes, my child with the huge heart believes every thing is living and feeling.  My son, the one with autism, that same autism that supposedly means that he has no empathy and can’t understand other people’s feelings.  That “symptom” is so far from the truth, it should be laughable by now.

If my son is right, that all things are sentient beings, it makes no sense to be a vegan alone because even plants feel.  It makes no sense to tell ourselves that it’s okay to kill because we’re only killing bugs.  It makes no sense to have a real Christmas tree because it looks so pretty and smells so good.  It would mean that I’ve spent years killing a living, feeling being, standing it up in my living room, and letting it die while I hang sparkly things on it.

Oh, my child.  How am I going to have a tree next Christmas? Or eat anything?

But, as Jack keeps reminding me, it’s not my job to turn off his feelings or invalidate his emotions.  If I get uncomfortable with his being upset about loss or pain, that is my fear.  I need to sit with my discomfort and think it through.  But, here, right now, I need to support him while he’s upset, not change his mind.

Or his heart.

About the Author: Brenda Rothman, the mother of an autistic son, writes about autism, parenting, and shoes on her blog Mama Be Good http://mamabegood.blogspot.com/. Brenda is also on Twitter @mamabegood, where she enjoys margatweetas, and on Facebook at https://www.facebook.com/mamabegood, where she spills coffee creamer.

All images are the exclusive property of Brenda Rothman and Mama Be Good and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Brenda Rothman at Mama Be Good. © 2009 – 2012 Mama Be Good.

Autism and the Big Heart first appeared on Brenda’s blog and is reprinted here with permission.

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K is for Kindness

Kindness and empathy are rather misunderstood emotions when it comes to those on the autism spectrum. There are recent studies that theorize that it’s not that autistics lack empathy or kindness; it’s just that they are so overwhelmed by their empathetic emotions that they need to turn them off or be consumed. So the issue surrounding autistics is not that they don’t empathize, but that, in fact, they empathize too much. Autistics, unlike their neurotypical peers, have no filter to protect their own emotions and their own well-being when dealing with the vagaries and cruelties of life.

I know. I have seen it firsthand with both of my boys.

It is never that the boys don’t care. It is, without a doubt, that when they hear of a cruelty or an unkindness it takes over their souls. It is not an obsession. It is not a perseveration. It is a feeling of being lost and not understanding that they cannot solve the world’s issues on their own. At times, they don’t seem to grasp that one can only do so much as an individual person. In fact, they feel that they have failed.

So that is our mission with them. Not to teach them to be empathetic but to help them understand their limitations as human beings — to know that you can give charity, help at a food bank, and feed people at a soup kitchen, but that in the end, there will still be those who go to bed hungry at night, and that you as a human being did not fail. We can only do so much as one person. They need to understand that our limitations make our efforts no less important, no less heartfelt, no less perfect, no less helpful, and no less appreciated in the moment.

It is times like this that I try, despite CM1′ s rejection of religion, to bring up what the Talmud says about kindness, empathy, and charity:

To save a single life is to have saved an entire world.

The Rabbis knew that human beings are just that — human beings. We can do just so much in our lives. It is the effort that counts. A single kindness, even holding open a door for the person behind you, makes this a better world. A smile, a thank you, and a helping hand, to the person right in front of you, says more about your life than anything else.

About the Author: Elise Ronan is the mother of two young men with Asperger’s Syndrome. This piece first appeared on her blog, Raising Asperger’s Kids, and is reprinted here by permission.

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