Misconceptions of Empathy in Autism

I am still working through my course on Autism Spectrum Disorder, and therefore am finding it hard to squeeze in time to write.  However, my amazing husband is taking the course with me, and has agreed to let me share his research paper.  I didn’t write the following, but am sharing it with his permission.  It’s so good.  All about empathy.  Which of course, I am working on developing my understanding of as well.  You can read my previous posts about empathy here, here, and here.

Misconceptions of Empathy in Autism

The term empathy was introduced to the English language in 1909 by Edward Titchener, who defined it as the ability “to project yourself into what you observe” (Baron-Cohen & Wheelwright, 2004, p. 163). The findings of psychologist Simon Baron-Cohen are often cited as evidence that autistic people have an underdeveloped sense of empathy and are therefore unable to understand and respond to the feelings of others (Russell-Smith, Bayliss, Maybery, & Tomkinson, 2013, p. 695; Smith, 2008, p. 273; Dziobek et al., 2008, pp. 464-465). This belief, however, does not give sufficient attention to first-hand accounts of autistics feeling empathy, differences in how they may express their feelings, and the lack of empathy that is sometimes shown to them. The Intense World Theory, which posits that the autistic people may sense and feel at a heightened level and may therefore be unable to respond in the manner expected by others (Markram & Markram, 2010, p. 22), may also account for part of the discrepancy between the stated experiences of autistic people and clinical observations. Inadequate attention among researchers to a broader view of empathy, coupled with this heightened sensory input, has created the misleading and harmful belief that autistics are cold, unfeeling individuals.

Baron-Cohen suggested in 1985 that autistic people lack a “theory of mind,” or ability to perceive the feelings and motivations of others (Baron-Cohen, Leslie, & Frith, 1985, p. 37). He based much of this idea on an experiment in which most children with autism were unable to determine the appropriate location for a doll to look for a marble in an observed scenario (Baron-Cohen, Leslie, & Frith, 1985, p. 42). He later collaborated with Sally Wheelwright (2004) for a study of empathy and autism. They had autistic individuals complete a questionnaire to assess their Empathy Quotient, which was then compared to a control group and found to be significantly lower (p. 168). Baron-Cohen and Wheelwright citing this as evidence of lower empathy in autistic people is problematic at a very basic level. Relying on self-reports to generate statistics, unaccompanied by any other method of observation, has proven to be unreliable (Donaldson & Grant-Vallone, 2002, p. 256). In addition, asking autistic people to respond to such a questionnaire is puzzling when considering Baron-Cohen’s earlier work on autism. In a 1985 paper, he stated that they have an impaired ability to “impute mental states to oneself and to others” (Baron-Cohen, Leslie, & Frith, 1985, p. 39). The inherent contradiction in stating that autistic people cannot understand themselves and then using their self-reports to prove their lack of empathy is enough to call the validity of the evidence into question.

Putting aside how people might rate themselves on a questionnaire, many autistic people, as well as the people close to them, state very directly that they feel very intense empathy and point to real-world examples as evidence. To find these first-hand accounts, one often has to rely on blog posts and personal websites, as autistic people are underrepresented among people who speak as experts on autism. Liane Carter (2013) discusses struggling with her son’s autism diagnosis; hearing her crying, her son recognized her sadness and gave her a hug. Many years later, he continues to recognize cues and respond in a comforting manner. Similarly, Cary Terra (2012) relates a story of an autistic client offering her reassurance after recognizing that she was feeling embarrassed. In describing his empathetic responses, Joel Smith, an autistic person, states, “it is overwhelming, threatening to wash my being away, when someone I care about is upset….I feel the pain very deeply” (Robertson, 2012, p. 187). Some autistics describe feeling empathy even toward inanimate objects. For example, Steve Slavin (2015) reports feeling sadness on behalf of possessions that are no longer noticed or used. Each of these examples shows that autistic people are able to pick up on verbal and nonverbal cues to understand an emotional state, which helps them internalize the feelings of others and often respond accordingly. These clear demonstrations of empathy are a much more valuable insight into the minds of autistic people han a problematic questionnaire or a test whose validity has been called into question for at least half a dozen potential flaws (Zurcher, 2012).

These deep feelings have been attributed by Drs. Kamila and Henry Markram (2010) to what they call the Intense World Theory. They suggested that the amygdala could function at a higher level in autistics, which may cause “emotionally relevant information” to be felt more intensely, leading to difficulty in responding to the situation and possible withdrawal (p. 3). This is in keeping with first-hand accounts of these people and those close to them, who state that empathy is often experienced at a level that is so powerful that it is debilitating. A theory that accounts for the reported experiences of autistic people, rather than dismissing anecdotal evidence, is a positive step toward giving these people more of a voice in developing an understanding of the condition. While the treatments recommended by the Markrams, such as “blocking memory formation” through pharmacological treatment and withholding stimuli from children (pp. 19-20), have the potential to be damaging to the child (Remington & Frith, 2014), the underlying ideas behind the theory may help explain the disconnect between the feelings of autistic people and how these feelings have been perceived by researchers like Baron-Cohen.

Anna Stubblefield (2012) suggests that the perceived lack of empathy in autistic people may be a learned behaviour. She states that they are frequently misunderstood by others, and that this misunderstanding leads to them being treated in a non-empathetic manner (p. 161). When autistics are told that their thoughts, feelings, and behaviour are incorrect and that they must assimilate to societal “norms” in order to be accepted, this demonstrates a lack of empathy on the part of the person criticizing the behaviour. Because the behaviour modeled for them is hurtful rather than empathetic, it should come as no surprise is some are left with a disordered sense how to respond to situations calling for empathy. In these cases, the perception of an empathetic shortfall in autistic people is partially a reflection on the people who have caused this confusion. Autistics may feel strong empathy, but the empathy deficit may be in the observers, who do not make a sufficient attempt to understand the feelings, motivations, and actions of the autistics. The perception of an inappropriate response will instead be placed upon the autistic people when reported, further perpetuating an incorrect stereotype.

Temple Grandin’s experiences with animals help support the ideas that people with autism feel empathy and that some of the perceived deficit in autistics may come as a response to the behaviour of neurotypical people. She discusses understanding the feelings and behavioural motivation of a squirrel by observing its actions (Grandin & Johnson, 2005, p. 205). She is well-known for her work with slaughterhouses, which is based on her observations of emotions in cattle. She saw that cows would hesitate when afraid, and she asked herself how she would feel in the cow’s place. (Kalbfleisch, 2013, p. 214). She has also written about her ability to understand the emotion of a horse by paying attention to subtle signs like the sound of its breathing and the movement of its tail (Grandin & Johnson, 2010, p. 123). The abilities to understand animal responses and put oneself in their place fits the definitions of both affective and cognitive empathy stated by Baron-Cohen and Wheelwright (2004, p. 169), further undermining the “theory of mind” belief that autistic people are unable to feel empathy.

Grandin and Catherine Johnson (2005) state that humans and animals share basic emotions, but that it is easier to understand the feelings of animals because they are more consistent and predictable (p. 88). This provides support for the idea that autistics are capable of feeling empathy, as Grandin is able to comprehend visual and auditory cues to understand the feelings of these animals. Recognizing these intricacies of animal behaviour, using this information to attribute emotions to the animals, and putting oneself in their place matches Titchener’s definition precisely, further establishing the fact that autism and empathy are quite compatible. If the barrier to empathetic understanding does not exist between autistics and animals, this also supports the idea that part of difficulty with empathetic understanding may be caused by other people, rather than, or in addition to, autistic people.

Baron-Cohen’s “theory of mind” hypothesis continues to be cited, despite significant changes in the understanding of autism in the 31 years since he put forward the theory. Taking his statements from 1985 at face value is no more logical than continuing to accept other statements from the same paper, including the dated statement of a 1 in 2,500 rate for the prevalence of autism (Baron-Cohen, Leslie, & Frith, 1985, p. 37), and the thoroughly discredited claim that “the majority of autistic children are mentally retarded” (p. 38). The ideas of Baron-Cohen and other autism researchers have created a false belief of unfeeling individuals, which In an article published by Autism Speaks, Dr. Roy Q. Sanders (2011), former Director of Psychiatric Services at Atlanta’s Marcus Autism Center states, “Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).” This attitude serves only to segregate autistic people further by creating and perpetuating an untrue and damaging stereotype. While some observations have supported the theories of Simon Baron-Cohen, these tests, which have been called into question, should not be taken at face value when accounts from the people in question show the exact opposite. First-hand accounts of autistics and those closest to them show a strong, and even heightened, sense of empathy. Rather than making assumptions and judgments based on an untrue stereotype, people working with autistic individuals need to be aware of these feelings in order to support them and work with them to develop strategies to communicate their empathy effectively.

 

References

Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”? Cognition, 21. 37-46.

Baron-Cohen, S., & Wheelwright, S. (2004). The Empathy Quotient: An investigation of adults with Asperger Syndrome or High Functioning Autism, and normal sex differences.  Journal of Autism and Developmental Disorders, 34(2). 163-175.

Carter, L. K. (2013, May 17). Autism and empathy. Retrieved from http://www.huffingtonpost.com/liane-kupferberg-carter/autism-and-empathy_b_3281691.html

Donaldson, S. I., & Grant-Vallone, E. J. (2002). Understanding self-report bias in organizational behaviour research. Journal of Business and Psychology, 17(2). 245-260.

Dziobek, I., Rogers, K., Fleck, S., Bahnemann, M., Heekeren, H. R., Wolf, O. T., & Convit, A. (2008). Dissociation of cognitive and emotional empathy in adults with Asperger Syndrome using the Multifaceted Empathy Test (MET). Journal of Autism and Developmental Disorders, 38, 464-473.

Grandin, T., & Johnson, C. (2005). Animals in translation: Using the mysteries of autism to decode animal behaviour. New York: Scribner.

Grandin, T. & Johnson, C. (2010). Animals make us human: Creating the best life for animals. Boston, MA: Houghton Mifflin Harcourt.

Kalbfleisch, M. L. (2013). Rare and powerful visual–spatial talent: An interview with Temple Grandin. Roeper Review, 35, 212-216.

Markram, K., & Markram, H. (2010). The Intense World Theory – a unifying theory of the neurobiology of autism.  Frontiers in Human Neuroscience, 4:224, 1-29.

Remington, A., & Frith, U. (2014). Intense world theory causes intense worries. Retrieved from https://spectrumnews.org/opinion/viewpoint/intense-world-theory-raises-intense-worries/

Robertson, R. (2012). Reaching one thousand: A story of love, motherhood and autism. Collingwood, Australia: Black Inc.

Russell-Smith, S. N., Bayliss, D. M., Maybery, M. T., & Tomkinson, R. L. (2013). Are the autism and positive schizotypy spectra diametrically opposed in empathizing and systemizing? Journal of Autism and Developmental Disorders, 43, 695-706.

Sanders, R. Q. (2011, April 20). The experts speak: Hard times come again no more. Retrieved from http://blog.autismspeaks.org/2011/04/20/experts-reflect-on-parenthood-finale/

Slavin, S. (2015, June 29). Autism: Feeling sympathy for inanimate objects. Retrieved from http://adultswithautism.org.uk/autism-feeling-sympathy-for-objects/

Smith, A. (2008). The empathy imbalance hypothesis of autism: A theoretical approach to cognitive and emotional empathy in autistic development. The Psychological Record, 59, 273-294.

Stubblefield, A. (2012). Knowing other minds: Ethics and autism. In J. L. Anderson & S. Cushing (Eds.), The Philosophy of Autism (143-166). Lanham, MD: Rowman & Littlefield.

Terra, C. (2012, June 7). The hidden autistics II: Asperger’s in adults and empathy. Retrieved from http://www.aspiestrategy.com/2012/06/hidden-autistics-ii-aspergers-in-adults.html

Zurcher, A. (2012, June 18). Debunking the theory of mind. Retrieved from http://www.huffingtonpost.com/ariane-zurcher/autism-theory_b_1594706.html

Love and Empathy round 3

I cannot get enough of my son.  My Jake.  My autistic son.  The one who drives me to insanity and who never stops talking and who asks me to do the most ridiculous things.

He is so beautiful.

He loves so much.

He is bursting with love.  He is overflowing with it.  He can hardly sleep because he just wants to be near me.  He just wants to kiss me one more time.  He just has one more “I love you” and one more question about Star Wars to ask me.

He follows me around the house.  Sometimes holding onto me.  Sometimes he brings his whole world where I am.  This afternoon I had to fold laundry so he brought everything into my bedroom.  Everything being a dinosaur, a long piece of brown craft paper crumpled, two large cardboard boxes, my woven baby wearing wrap, some Lego figures, and a lightsaber.  This was all needed to show me how he would film a trailer for his movie.  He’s a director these days.

DSC06013
A Lego Star Wars battle.

It makes me love him even more.

I want to actually follow through on my promise to have a sleepover in his room over Christmas holidays.  I have been putting it off for so long, and I know it would mean so much to him.  I will not get much sleep, but I hardly get much sleep anyways, what difference will it make to me?  It will make all the difference in the world to him.

I am completely over the empathy question (see Empathy round 1 and Empathy round 2).  This boy, he loves and feels so deeply.  It challenges me to love deeper and more.  I am learning how to show love and say “I love you,” and I truly thought I was an expert at that.  I don’t know how long it will last; surely little boys grow up and stop wanting their moms to snuggle with them, but it is so, so special.

I have read many blogs by moms who write about how their autistic children have shown love, true, deep love, and it comes out hard to understand.  I don’t know if or how I can avoid that.  How can I explain that when Jake loves, it is consuming?

I am learning so much about how to love my God, how to love my husband and my other children, from this one boy.

So about empathy.  We have adopted a kitten.  She is adapting extremely well to our noisy, busy household.  And the kids love her.  Just love her.  Penny squeals at her, pulls on her fur and her ears, and is trying to learn how to be gentle.  Aiden lifts her up, lugs her around, swings her, bounces her, hounds her and tortures her, all in the name of love.

But Jake.  Jake whispers to her.  He searches for her and gets right down to pet her.  He giggles gleefully and uncontrollably when she touches him.  He will not pick her up.  He will not push her, pull her, poke her, or bother her.  He leaves doors open for her and never forgets to feed her and give her fresh water.  He lies perfectly still when she jumps on his bed so that she won’t startle and leave.

That is empathy.

That is Jake, understanding how a kitten might feel.

That is Jake, realizing how painful and scary it can be to feel trapped, restrained, and touched.  I have not one time had to tell him to be gentle with the cat.  He is cautious and caring.  He shows his love in ways that amaze me and seem beyond his years.

I try to tell him how much he means to me.  And then I worry that I am telling Jake this more than I am telling Aiden or Penny.  I try to show him how much I love him, and it never seems like enough.  It really isn’t, as he follows me, telling me that he just needs more love.  But I worry that I have not shown enough to Aiden or Penny or my husband either.

I want to give more, and I am swinging on a pendulum of feeling like I just adore him, and life, and all these incredible children and moments so much!  And then I switch to feeling like they need more than I have to give and I am wholly inadequate and can never give them enough.  Thankfully this is love we are talking about, and there are always ways to give and share love.

I am trying to love Jake like he loves our kitten.  To see what he feels and love it.  To be there for him, to be there for all my kids, and not be frustrated at them.  Right now the pendulum is all the way over in the incredible love zone, and I can’t wait until the holidays when they are all home all the time.  I just can’t get enough of him.

 

A Tiny Hole Pricked in the Dam

Well.  I did it.  I told Jake he is not alone.  He is part of a group of individuals who share similar struggles and gifts, and that being a part of this group means that he is autistic.

He didn’t ask me loads of questions.

He didn’t wonder if this made him special or if it was in his brain.  He didn’t ask if I was autistic too or if Aiden was or what it meant.

He didn’t say anything.

He nodded.  And kept playing Lego.

I waited.  He didn’t mention it at all that night.

He didn’t mention it the next day.

I have to say.  It was anti-climatic.  I was hoping that he would have questions.  My determination to not make a big deal of it stopped me from elaborating on the things that I have wondered.  He will wonder things one day, I’m sure.

He didn’t go to school and tell all his classmates.  I had kind of worried about that.

It was almost as though it never happened.

Except it did.  And the quiet, not a big deal nature of it was good.

The other day at his Tae Kwon Do class Jake had an accident and hurt himself.  Before warm-ups.  Before class even started.  His dad was surprised at the severity of the meltdown that ensued, and class was almost half over before he managed to convince Jake to try again.

This label is important.  The teacher didn’t make a big deal out of the screaming 6 year old with his arms wrapped around his fathers’ ankles.  Dear dad was totally embarrassed, but he responded calmly, knowing that his kid can be a struggle.  That once he is thrown off, it is hard to reset.

They came home, with Jake happy and victorious, and dad burned out and frustrated.  Dad and I discussed strategies, positive reinforcements for calming down quickly, and new visuals that could help.  We strategized.  Jake will learn to strategize.

Then we talked about what the other parents might have thought and how hard it is to know what to say or do when we are out in public and this kind of thing happens.  Truthfully, it is happening less all the time.  But what is there to say?  Do we make excuses, announce his labels for the public, run from the situation and continue the meltdown in private, give up on Tae Kwon Do?  I just don’t know.  Those moments are hard.

I talked with Jake about it after they came home and tried to explain how dad was feeling.  I think Jake understood.  He said that if he was the dad and his kid did that he would be very upset.  He has an unusual way of speaking when he is being empathetic, and I think he was close to getting what was going on.  He is so good, so intrinsically good, I believe that he will get it.

And so, I am proud of myself and my family.  We love our autistic Jake.  We would do anything for him and his happiness, and we work hard with him so that we can all get through each day.  One day at a time.  And one of these days we will talk again about being autistic and what it means.

New Convictions

I guess I am becoming a neurodiversity advocate.  I am not reluctant, merely surprised.  This wasn’t in my plans.  I didn’t know I had it in me.  I didn’t know I needed to.
I have come a long way this past year.

I have decided that I am ready to write about what I think I believe, now.  That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up.  A year ago I wrote about what I thought I believed then.  A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.

Here it is for now, then.

I don’t want to change Jake.  I don’t want to cure Jake.  I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic.  I want to help Jake learn how to thrive in situations that are not easy for him.  I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is.  I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.

This may not seem revolutionary, if you have been following my progression on this blog.  It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community.  It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake.  I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism.  I feel like it is so important to ground myself in my beliefs and to know where I am coming from.  It impacts where I go, what I say, and how I act.

I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him.  Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.

Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability.  Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.

There is something about people who struggle.  They are made stronger.  The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven.  When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give.  Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.

Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I feel like sometimes I am the one who needs the therapy.  I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes.  I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose.  I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner.  Unfortunately, there is no funding for that.

I jest, but in truth, I am realizing more and more that it is me who needs to change.  I discovered this website today, https://theantioppressionnetwork.wordpress.com/allyship/  and it explains allyship as

an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people

I am that person of privilege.  Social situations make sense to me.  I thrive on conversation.  I talk out my feelings.  I excel in interviews, in group situations, and don’t notice when things are out of order.  I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.

But.

But I love autistic people.  I love people who are disabled.  I will stand with them work with them.

I believe that autism is a disability.

The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I had a conversation last summer with my sister-in-law about disability.  She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority.  She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement.  It resonated with me and I am still chewing on the idea.

 

Force Awakens Dealer by Jake
 
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.

I believe that I have a role to play in educating all those I can.  Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs.  I can’t tell those in human resources that when hiring, to hire every shifty eyed individual.  However, I can increase acceptance and understanding of different ways of communicating.

Most importantly, I can have faith in Jake.  I believe in him.  I believe in his abilities to solve problems.  I believe in his dreams.  I believe in his heart, his gifts, and his growth.  I believe that he is created by a fierce and loving God who knows what he is doing.  I can wait, I can watch.  I can hope and I can pray.  And I can find what I believe and stand firm in it.

A Review of Four Autism Myths

Recently a book was released that is making a huge impression and getting a lot of press for autism. It’s called Neurotribes, and it is written by Steve Silberman. I have not yet read the book, but I intend to.  Actually, I can hardly wait. I have read incredible reviews and cannot wait to get my hands on a copy.  The author, although not autistic himself, advocates for a reimagining and a major change in the way the public thinks about autistics. And it seems to be wonderfully positive.

I read the following article this morning. http://www.bbc.com/future/story/20151006-its-time-we-dispelled-these-myths-about-autism  I recommend reading it fully. It gets right at the heart of how feel, and clearly explains things that I know are true.

The first myth he dispels is this: Autism used to be rare, but now it is common. I know from my experience teaching, that there were students when I started that I really struggled to help. I did not know how to teach them, to reach them. I feel like I failed them. However, I also know that some of them moved on and eventually received an autism spectrum diagnosis. In hindsight, these students were demonstrating what we now know are autistic traits, but even just a few years ago, we didn’t have the understanding to recognize them. It is clear that there are autistic traits going back for generations.  People who were never diagnosed, but shared the same struggles.

Myth number two is this: People with autism lack empathy. I have written about some of my thoughts about this here and here. It is crystal clear to me that this is simply a lie, a misunderstanding of autistics that continually gets recycled. I know I struggle to be empathetic at times, and I can see every day that he doesn’t share this struggle. He is very in tune with how other people are feeling.

The third myth is this: The goal should be to make autistic children “indistinguishable from their peers.” I could and should probably devote some time to sorting out my feelings about this. It is wrong to me that anyone should have to completely change from who God has created them to be. However, being able to work within our society and to “fit in” are very useful skills. To me, Jake’s successes will be what they will be. It is my job to help him to find ways to cope, to thrive in the world he has been born into, and to know that who he is is wonderful. Being unaware of his autistic nature does not help other people to support or understand him. It would be so much better for him to make friends who appreciate and love him for who he is than for him to have to be “indistinguishable” in order to make friends.

The last myth is this: We’re just over-diagnosing quirky kids with a trendy disorder. This myth is hurtful to the families who don’t know how to help their children get through the day. It is hurtful to the families who are facing the difficult decisions about how to transition their autistic loved ones to adulthood or even senior citizen life. It’s hurtful to me, as I can see now just how incredible a diagnosis can be and what kinds of positive change can come from belonging to a community of support.

My husband and I had a conversation last night about last Christmas holidays. We took our kids sledding with their cousins. Jake had been regaling us with stories of sledding at school on his recesses, so we went there to see what he could do and have some fun. We had just discovered his autism two months prior. Well. Jake thought that sledding was the most fun when you climb up the hill and toss your sled down. Then you run around yelling.

We tried hard to get him on his sled. His cousins had a great time actually sledding. His dad felt like Jake was missing out on this chance for happy memories. I couldn’t believe I had been cheering for him daily over his sledding victories. I couldn’t believe I actually paid money for the sled.

Now, almost a year later, we have changed. We have learned and we have grown. This kid is quirky, yes. But he is also autistic. And that means that his way to have fun is fun. His memories will be happy when he is allowed to be happy. His brain is different. So of course sledding for him is different. It is not an over-diagnosis. It is a key to understanding, love, strategies, and hope.

Fries with Trust, or Trust with Fries

I read a beautiful post today about trust. It was written by a mom, about her father and her daughter and how over time they have developed a trust where even though the little girl is autistic and dislikes being touched, they can share an embrace. She explained how when we love someone so much that we can hardly breathe because we just want to hold them, sometimes the best way to show that love is to restrain ourselves until we can develop the trust that is needed. Like I said, it was beautiful.

Jake and I struggle with trust. When he was younger, when I didn’t know about autism and what he actually needed, I pushed him too hard. I tried to get him to try new things, even when it became clear that he really didn’t want to. I tried to get him to be adventurous, to take a risk, to jump into a pool, for example, when he really, really didn’t want to. I am sorry now. I am working so hard to earn his trust.

Most of the time I can see that he does trust me. He loves to be held and snuggled by me, so long as I respect the “not too tight” rule. He loves to look into my eyes, and I love to look into his, as long as I wait for his initiation and am not also trying to talk to him. But then something comes up that I don’t understand. And I struggle.

Today it was French fries. Jake loves fries. Loves McDonalds fries, Arby’s fries, restaurant fries, homemade fries. He loves straight fries, crinkle cut fries, and yam fries. He loves fries with the skin on and fries with no skin. He loves those tasty taters that are essentially balls of fries. So his sweetheart of a grandma made him some very special alphabet fries. They were gluten free, casein free, totally healthy and totally fun. We spelled his name. But nope, he would not eat those fries.

I didn’t get it. And I didn’t let it go. He was being rude, refusing to eat them. He said his tummy was full. And then he asked me for a Popsicle. Not going to happen, buddy. We took the fries home, telling him that he would eat those fries before he was allowed to have anything for a bedtime snack, he would eat those fries for breakfast if he had to.

So there we are, ready for bed, and he’s crying about the stupid French fries. And I finally asked, “Jake, what is wrong with these fries?”

Well. They were too curly and strange. He was worried that they would make his stomach curl and be sick. They were not the right shape for food to be.

That’s when I clued in. This is not about food. This is about autism.

He is autistic. He can’t eat strange fries. They have to fit into the idea of fries that he has, that he knows. Strange things are scary. Strange things are unknowns and that is scary. I am scaring him. He doesn’t trust this food and he is scared and crying because he thinks I want him to eat something wrong.

Breathe, mama.

So, we calmed down, and talked about fries and how they are made, and how I ate them and they were good. Then we broke them into straight pieces that resembled what fries should look like and he ate them without difficulty. Except for the S and the R. They were just too curly. And that’s okay with me.

I am going to get it. I am going to earn his trust. I just have to trust him. I have to ask him and I have to listen to him. It goes both ways. It’s a hard lesson for me. But I can see the payoff.

Jake received this Lego set for his birthday and his loving aunt spent ages building it with him.
Jake received this Lego set for his birthday and his loving aunt spent ages building it with him.  Building trust. right!

Stories of trust earned by learning how to really love each other and show that love through restraint and patience inspire me. I want to respect Jake and what he is experiencing. I want him to trust me so that he can stretch and become more flexible, because he trusts me, not because he is forced into it.

I will need to breathe more.

Empathy round 2

I can not say it enough.  Learning about Jake’s autism has been such an incredible key to knowing him.  It is affecting our family more and more.  As we learn more and filter what we are seeing day to day, we are becoming better parents, more understanding people.

I want to revisit the topic of empathy.  My first post on about empathy is here.  We have talked about it in rounds, my husband and I.  We see Jake’s kindness, thoughtfulness, concern for others all the time.  And then all of a sudden something seems off and I can see why people say that autistics struggle with empathy.  Something as simple as, ‘I hurt myself, I need a minute, then a band-aid, and then I can come put the tv on for you.’  It makes me shake my head and wonder, “Kid!  Where is your understanding?”

However, I believe that this seeming lack of understanding does not truly correlate with a lack of empathy.  I think it is more social cluelessness, as explained in this definition and example.

– Social cluelessness

Not being sure how to act without making things worse if someone for example suffers a tragic loss; if they want to talk about the painful event or if they don’t want to be reminded. I think it must be hard for everyone to know, but even more so for a socially clueless Aspie.

When my only friend in 5th grade lost her father I had no clue what to say or do and was too shy to ask anyone for guidance (the information about her father’s death didn’t elicit any advice or instructions from my mother, who was very young and rather Aspie herself) so I just avoided my friend for a long time instead. A shameful thing that I felt bad over for years but I can now have compassion for myself for really not knowing how to handle it.

– Ing, site-author

https://insideperspectives.wordpress.com/emotions/empathy/

What appears as a lack of empathy is probably just Jake trusting that I am mom and therefore I will always be fine and I am here to help with his needs, which according to him often include turning on the tv at the time of his choosing.  I think it is more ego-centrism and cluelessness than genuine lack of empathy.  Ego-centrism is just as common in people with autism as social cluelessness.

“Aspies find it easy to get called selfish just because it doesn’t occur to us to enunciate concerns for others or to ask unprompted casual questions about them. I can remember once getting called selfish for not asking after the health of as family friend who had been seriously ill (he recovered and is alive now). It simply never occurred to me to ask after it as I knew I would hear any news I needed to.”

– Maurice, Aspie from Scotland

https://insideperspectives.wordpress.com/emotions/empathy/

In my previous post, I discussed the idea that autistics actually experience an overwhelming sense of empathy.  This is not the only opinion, however.  One writer I have really enjoyed reading is an adult on the spectrum who disagrees with the idea that autistics have an over-developed sense of empathy that is simply misunderstood.  She also thinks there is nothing wrong with a genuine lack of empathy.

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

This idea is supported by other bloggers, explaining that our definitions of empathy are the problem, not the actual lack of empathy.

Now, let’s look at what society defines empathy to be.  Empathy, as many of us imagine it, is the ability to feel bad for someone else.  However, is that really what empathy is?  Let’s examine the true definition of empathy, as reflected in the American Heritage Dictionary:

“Identification with and understanding of another’s situation, feelings, and motives.”

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

This suggests that yes, it is hard to identify with and understand another’s feelings and motives.  In conversations with my husband, I would quickly say that we both struggle with this.  Any one of our arguments can be traced to a misunderstanding of the other’s feelings and motives.  Rather, we all need to work on empathy, and recognizing that it is a struggle for Jake and other autistics will give us more patience when we deal with them.

When I was a kid, I couldn’t really empathize well. Without realizing it, I would say things that hurt people’s feelings (I still do). The aspie doesn’t really “think on the fly” during conversations. There’s a delay and we often don’t pick up on non-verbal or non-obvious cues that we’re hurting someone.

http://life-with-aspergers.blogspot.ca/2007/10/aspie-and-empathy.html

However, this has little or nothing to do with the concern, care, and love that autistics feel towards others.  It may not even be as important as it is often portrayed to be.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

Empathy has nothing – NOTHING – to do with love or one’s ability to care.  Think about it. Have you ever loved someone that you just didn’t always understand?  Maybe your autistic child?  Beyond that, did you ever have a “crush” on someone who seemed so outside of your type?  Just because you look at your child and can’t identify how he or she is feeling doesn’t mean you love him or her any less.  Have you ever loved someone unconditionally?  The definition of unconditional love seems to imply that it is outside of one’s ability to understand or do or say anything.  They simply love.

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

Yesterday we took Jake to Wal-Mart to look at the Lego.  Just to look.  It’s a reward for him, something special to do.  While he was there memorizing all of the packaging, another couple and their kids came into the aisle as well.  When it became clear that they were also there to look at the Lego and not just passing through, Jake quickly became uncomfortable.  My husband, who like me is quickly learning, got down at his level and had a quick, quiet conversation.  Jake explained that he ‘didn’t want to cause trouble when we [Jake and his dad] have to leave.’  As in, walking out of the aisle past these other people would disrupt their Lego looking and be uncomfortable.  So they solved the dilemma by agreeing to leave out the far end of the aisle.

This to me screams of both the ability to care and the ability to put oneself in the position of another.  However, it doesn’t actually relate to true empathy according to the definition.  Jake and his dad treated the other people in the store the way that they would have wanted to be treated if they were in the same position.  Treating others the way they want to be treated.  A lovely way to treat people, but not actually understanding what the other people DID want.  They may have been looking for a gift and wanting Jake’s suggestions.  Because no conversation happened, no actual understanding of another’s motivations happened.  No one had any idea of the others’ feelings or situation.  In fact, my husband was the only one in this particular scenario to truly demonstrate empathy, and it was towards Jake.

I think that teaching our kids to be kind, to care, to listen and understand other people is what is important.  Eventually this will translate to sympathy, and when it really matters, empathy.  But all kids and even adults need to work on it.  Knowing that the mental gymnastics required are quicker, more difficult for autistics is something that will help me to be more patient and sympathetic.

Projecting My Ideas of Fun

I struggle with what to post on this blog. Daily, there are so many things that I could tell you, that I would really love to write about. My husband recently referred to it as “blog fodder.” I think that’s hilarious. But really, I struggle. The thing is, this is public. I want to share our stories, encourage and educate, but the reality of it is, I don’t want to embarrass my kids. One day they might read this, and I would hate for them to think that I was sharing things about them with the world that they would really rather I did not. It’s a tough one for me.

I want to be open, and they are the most important people in my world, so I need to be able to be open with them. At times I feel like I might be censoring some of our harder moments in an effort to protect them. I am okay with that.

However, it really is hard sometimes. I think this is something that is worth sharing, because when they grow up and have kids of their own, I want them to know that I get it. I love them and support them no matter what, and parenting is hard. There is so much to learn. I feel like I am self-reflecting a lot lately.

Recently I have tried to do things I thought were simple and fun, only to have Jake fall apart. My attempts to provide easy happy activities have turned disastrous. We planned to go to a nearby provincial park and have a fire, roast some hot dogs, and play outside for dinner. I wanted to be away— from people, from my house and our mess, and just relax and enjoy my kids. We have done this so many times, it felt like a guarantee. Just go out, relax, have some fun.

Well, we had not done it with three kids before. And we had not done it yet this spring. But I wasn’t worried. Not at all. Jake was tired, but we went to church. It went well. I had to pick up some groceries and my husband had marking to do, and so the boys went to their grandparents’ house for an hour while Penny napped. The plan was beautiful. I picked them up after shopping and we went home to load up and head out.

I don’t have any idea what went wrong first. Jake didn’t want to play in the sand. He didn’t want to play in the water. He was hungry. We toughed it out another fifteen minutes, no, ten, no, five, then headed up to make our fire. I forgot the boys’ water bottles. There was lemon water but that tasted funny.  There were cans of carbonated water but that was weird. There was Penny’s water, and so Jake finally settled on that. After tears. Many tears. Then the fire was too smoky. Then the hot dogs weren’t right.  Then he was tired and ready to go home. We toughed it out again, trying to regain some feeling of fun, of relaxation, when he was so wound and not fun. Argh! Miserable.

We finally left, and made it home for a pretty early bedtime. It wasn’t all bad. Penny loved it. Aiden loved the sand and the lake and was sulky after we left that part. I promised him I’d take him back.  Being in the trees and the air was wonderful.

I just didn’t want to skip doing something that we all loved just because Jake was falling apart. Partially because this was something he loved so much last summer, I really missed that. But the whole day left me drained and emotional. I can see now that there was too much going on in one day. If I want to plan a beach picnic, that needs to be the only real event of the day.

May 2015 738

Another night I wanted to plant the seedlings in the garden. The boys have been caring for these little plants and helped me plant the seeds. I wanted them to be a part of the next stage. However, Jake was not really up for it. Everything was bothering him. The sun, the dirt, the brother who was in his way.

Again, there were tears and whining.

Eventually he was yelling, “I am tired! You are not listening to me!”

And so we cut and ran. We went inside, and got ready and put the boys to bed. I felt like it was the only thing to do. I finished the planting myself and tried to not be disappointed.  I want to listen to him. I want him to know that I am trying. It’s so hard, when I feel like saying, just have fun! But it isn’t fun. Not for him, and therefore, not for me. Of course, we were up later in the night with a fever and that totally explains it all. He wasn’t feeling well. I’m sad for him. I’m sad for all of us! This isn’t easy!

Last year, a mom of an autistic student of mine was describing her struggles when taking her son to Disney Land. She wanted him to go on rides with her, so that he wasn’t missing out on any of the fun.  Some of those rides he adamantly refused, and she was reflecting on this with me. She said that it wasn’t right that she was trying to project her idea of fun onto her son, that he needed to enjoy what she enjoyed. It makes so much sense to me. Her son had more fun watching parades, shopping, and on some of the easier rides.

And yet, I just want to enjoy these things together. I don’t want to stress him out, I just need to figure out how to make sure that I am listening, prepping, and, I guess, doing more to make situations work for Jake.

Authentic Community

The pastor at our church has been working hard with all of us faithful churchgoers, trying to coach us into an authentic intergenerational community.  He has spoken about how we need to share our stories with each other in order to develop this authenticity and community.  Time and time again I have seen the power in this simple process.  When we share our stories, we share what God has done in our lives.  We share our hopes, our fears, our sins, our redemption.  We begin to appreciate other people for who they are, and how they inspire us.  We end up joining our journeys together, becoming stronger, more resilient, and more alive in the process.

God did not create us to live alone.  We are designed for community.

April is Autism Awareness Month.  Our first Autism Awareness Month as an official autism family.  As such, I have struggled with what to do.  I am interested and excited to view Autism Awareness Month from an “inside” position, from a place of more knowledge and more curiosity.

I also feel called to share something of our story.  This isn’t so easy.  We are connected to real people here in our real lives, friends and family who know us and our story, who have been supporting us all along.  And we have other people in our real lives, those acquaintances and facebook friends that don’t know all the gritty details.  Finally, we have the extended family and distant friends, separated by distance and busy lives and yet connected through history and love.  Who do I share our story with?  How?  What do I say?

This year I have decided to start small.  I don’t feel comfortable explaining Jake’s diagnosis on facebook, and I don’t feel like all the people I am loosely connected to online need to know all about it yet.  I am not ashamed of him or the diagnosis, rather I want to protect him, allow him to form his identity before I go about creating one for him online.  Also, the way information travels through facebook troubles me.  People he hasn’t yet met could hear about him and form opinions about him without meeting him in person.

However, our there are some people who are different in a few interesting ways.  One, they will probably never spend much time with my kids.  Life is just too busy, we are separated by so many miles.  People who I spent so much of my childhood with are creating childhoods for their children and the only way we are currently related is online.

And yet, this is a good way to connect and form an authentic community.  I can share our journey so far, be open about what we are going through, and create a deeper connection between us.  I know when I get an email, a phone call, or even a Christmas card, it thrills me.  I feel like we are still related, connected, on different paths but still journeying together.

The reason we don’t have authentic community is often fear.  Fear of being misunderstood, of being judged, or of bringing up something that will offend.  There is a huge desire in my generation to be heard, to tell our story, to share what is going on with my life.  This partially comes out of living a life saturated with social media.  I don’t think that all we crave is our fifteen minutes of fame, however.  I think we are craving a community, a support, a sense that we are not alone in our journey.  I know how much I’ve changed in the last six years.  I feel like I am a completely different person.  One with more sympathy, more empathy, more real friends, and much less judgment and fear in my life.  This is because I have been on a journey, and I have had people to share it with me.  People to cry with me, encourage me, pray for me, and inspire me.  Some of these people are very close to me and others have never heard of me.

It comes from sharing our stories.  Being authentic with people.  I don’t invite shame.  I don’t invite judgment.  Not happening here.

Bruce Springsteen wrote in his song “Into the Fire,”

May your strength give us strength

May your faith give us faith

May your hope give us hope

May your love give us love

This prompted me to send an email explaining Jake’s diagnosis, autism, and the blog a little to some treasured, more distant, people.  I am so happy about it.  I know they can relate to some of the parenting stuff that we are all going through.  I know they can relate to caring so much about our kids that we are diving in without a thought.  I know that they don’t know what to say, don’t know how to respond.  It’s all good.  I feel like I am spreading awareness, I am hoping I am spreading hope.  Thank you for being a part of my community.

Empathy round 1

When we were working through the diagnosis process for Jake, there were many, many questionnaires.  I understand that they are useful and important, that they are a quickly assessed way to gather a great deal of quantitative information about situations that are often emotional and complicated.

But, Heaven help me, they are so hard.  Facing page after page of rating your child, your family, your life, your reality is excruciating.

One of the things the questionnaires attempt to tease out is the question of empathy.

Empathy.  Only one of the most complicated of human experiences.

Empathy.  The ability to put oneself in the shoes of another, to imagine an experience from someone else’s point of view.

How on earth do you find out if a child, a child under age five, experiences empathy?  How can they tell you?  They cannot.  Add on to that social problems, sensory issues, and a completely misunderstood brain function.  Now try to find out if that child experiences empathy.  Right.

I know amazing teachers who work on developing empathy.  I know wonderful parents who try to model empathy.  I know of programs where empathy is supposedly taught directly.

I know that Jake struggles with empathy.  I just don’t know why.

He has always shown little concern for other children when they are hurt.  However, this is our observation at home, where the ‘other children’ have been his brother or his cousins.  They pick on each other.  They are kids, boys.  They push each other, wrestle, steal each other’s toys.  Inevitably, someone ends up hurt and crying.  Jake usually responds by walking quietly away from the crier.  We have asked him, oh, so many times, “Look at Aiden!  Does he look happy?  Does he look hurt?”

We didn’t know.  We didn’t know that processing facial and emotional cues was hard for Jake.

Does that mean he isn’t empathetic?

Now that he is a little older, all kinds of interesting things are happening.  He has expressed great concern about making sure that all of the kids in the class have the right supplies.  He has been anxious because some of the girls in his class haven’t had the chance to be first in line after lunch.  Anxious!

This week, we have all been sick.  My husband was sniffling as he played Lego with Jake on Saturday.  Jake asked him if he was hurt.  No.  Sniffling continued.  Jake again asked him if he was alright.  Dad finally clued in: Jake thought he was crying!  So they talked about Dad being sick and Jake was relieved.  Lego continued.

That all sounds a great deal like empathy to me.

So I did like I do, and went researching.  I found this:

What I saw in these [autistic] students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).

http://karlamclaren.com/autism-empathy-and-the-mind-blindness-of-everyday-people/

I’ve written about the Intense World theory here.  You should read that too.  It’s all so amazing.  And this finally makes more sense.  I read what some other autistics said about their feelings related to empathy.

“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”

Said another,

“I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”

http://www.thedailybeast.com/articles/2009/05/11/a-radical-new-autism-theory.html

I have always known that Jake is more of an observer than many other kids.  He will watch a group of kids play rather than joining in.  He notices everything!  All kinds of details.  Why would we assume then that he doesn’t notice how others are feeling?

Maybe he doesn’t understand their faces.  Maybe he notices the sounds they make, like sniffling.  Maybe he notices where they stand in line.  Maybe he notices if they do not have an eraser, but everyone else does.  And if he can understand how that would feel, is that not empathy?  It just isn’t the way I learned empathy.  But I am learning.

And oh!  If it’s loud, and messy, and someone is hurt, and yelling and crying and upset, what if that is simply too much to bear, to relate to, to comprehend and know what to do?  What if when your little brother cries, you don’t know what to do?  So you walk away, a few steps, quietly.  You play with that toy that you stole, the one that made him cry.  Maybe it just takes longer to figure it all out.  Maybe you need to be able to listen?  To hear what’s going on without all the red faces and tears getting in the way?  I don’t know.  I just wonder.

Jake consistently prays for people who are sick.  He asks us about our day, what our favourite part of the day was.  He asks us what’s wrong when we are sniffling.

I say he’s got plenty of empathy.