Telling the Whole Story

Princess Kate is one of my heroes.  She is incredibly beautiful, always smiling, intelligent.  She married a Prince and became a Princess.  She is a mom.  She lives publicly, always watched by millions of people, and does not seem to mind.  She appeared publicly in high heels hours after delivering her second baby.

And she is speaking loudly and publicly about supporting our children and their mental health issues.

I could not be more impressed.

She has said that she wants to remove the taboo around talking about mental health issues.  She and William and Harry have been working together, have founded their own charity, Heads Together, with the focus of changing the conversation, getting people talking.

She even said, to the media, that she and Prince William “wouldn’t hesitate” if their children needed help with their mental health.

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William and Kate with their family, smiling and looking radiant, from wikipedia

 

Right now, I know several mamas who are in the process of trying to figure out assessments for their children.  They are not sure if their children are autistic, have ADHD, have ODD, are bipolar, or none of the above.  They are heroes as well.  Because while they are searching for answers and pushing against teachers, doctors, and therapists for more information, they are also being watched and scrutinized by the greater parenting community.

There is still a feeling that if there is something “wrong” with the child, there must be something wrong with the parenting.  There is a feeling that this generation of parents just isn’t in control of their kids.  There is a feeling that diagnoses are excuses to medicate and avoid parenting.  It comes from our parents’ generation, and the way that we have been raised, and the intensity of parenting while trying to maintain likes on Instagram and Facebook.  How can I admit that my child is struggling while still smiling and sharing pictures of the paintings we did this weekend?  How can I admit that I am seeking answers to my questions about what makes my child different if the constant message from the online world is that “God designed me to mother these children, and I can handle it”?

I want to be a strong woman, and to support strong women.  There is a meme that reads: “Here’s to strong women.  May we know them.  May we be them.  May we raise them.”  It moves my soul and makes me want to live as a strong woman.  There are supports out there that say things like, “Don’t mind the mess, my children are making memories.”  These are positive messages that encourage moms to breathe and appreciate their kids, but then it is even harder to admit, I live in filth, I struggle to smile.  Strength right now is putting on a show so my kids are distracted while I go hide in my room and cry about how I feel like I am a failure.

In the midst of all these parenting pressures, there is a deep culture of shame.  A definition of shame is that shame is the intensely painful feeling that we are unworthy of love and belonging.  (B. Brown).  We all feel that we are not good enough.  Not doing a good enough job.  Not making enough money.  Not being fun enough.  Not praying enough.  Not worthy.  While the Bible does say, “For all have sinned and fall short of the glory of God,” the entire rest of Jesus’s story is spent exclaiming just how incredibly valuable we are to him.  To Jesus, we are worthy.  In Jesus, we are worthy.  We are more than worthy, we are priceless.

“Shame needs three things to grow in our lives, secrecy, silence, and judgement.”  (B. Brown).  Shame is the pain we feel when we look around us and feel the burden of comparison and judgement coming from every single direction.  Intended or not, we can feel judgement from even our closest friends, even our partners and spouses.  Especially when it comes to raising our children or getting to the heart of their special needs.  However, it is not from God, and the pain it brings is enough of a reason to try to crack and break the silence.

When we share our stories honestly, we develop community, empathy, and resilience to shame.  When we talk about how things have changed with a heart that wants to understand across generations and differences, we can connect and understand each other.

I want to talk about how hard it was for me to seek an autism diagnosis for my son.  My son is amazing, intelligent, and even well-behaved much of the time.  He speaks clearly and is doing well in school.  And, he is autistic.

I want to talk about how hard it was for me to breastfeed my children.  I want to talk about how God loved me through my post-partum depression, didn’t leave me, but didn’t free me from it either.  I want to talk about how inadequate I feel as a mother, as a wife, and as a partner.

But I want to do it without whining.  Without pouting.  Without judgement.  Without judging myself.  Without making it sound worse than it is.  Without making it into a sob story.  It’s not a sob story.  On their own, none of those things I want to talk about is even a story.  It’s just part of my story.  And my story is long, convoluted, and far from over.

I guess I feel like the best stories have real hardship, but also have real courage, and I can see how choices made reflect the values of the teller.  I know that my story has all of those things in it too.  I just struggle to be real and tell it.  This is why I am so incredibly amazed and impressed by Her Royal Highness, and the changes I can start to see filtering down.  She is trying to be real.  She is trying to embrace her own struggles and talk about how real people are really working through their stories.

She inspires me.

Summertime stimming and conversations with parents

Summertime in our house is so loud. It’s unbearably loud at times. I understand the need to stim, the happiness, the joy, the excitement. I understand that it is self-regulation and that it helps things. I know that it is important and that the problem with stimming is all in its perception. However, this house is loud.

This summer, Penny and Aiden are louder than Jake. This is partially due to Jake finally understanding and appreciating quiet and time alone. He has taken to playing upstairs in his room with his Lego without anyone else present. This is a major development. As he has now learned to read, he is also happy to sit and read his favorite books endlessly. So much quieter than last year.

But Aiden. Aiden is a yeller. A hollerer, and a stimmer. I still don’t know how much of what he does is learned behaviour and what is his own little personality. When he is mad he is instantly in tears and yelling at the top of his voice. When he is happy he hums. A loud, monotone hum that has no music to it, it is simply a loud hmmmmmm sound. It’s a happy sound, and it always makes me smile because I know how happy he is. We first heard it when he was super small and eating. He would hum that same sound, the exact same tone, while he happily ate. It was adorable.

Penny is learning some words. She can say Mom, Dad, Aiden, Kitty, more, hi, yes, and no. She also manages to vocalize her demands and objections quite clearly without words. She loves to pretend play, much more than either of the boys ever did, and she is super interested in playing dress-up. She is quite social, and super observant. She knows how to unload the dishwasher and clean the toys up. The boys are still learning those things. She knows how to put away laundry and work the iPad as well as anyone. She is obsessed with buckles, and needs them done up all the time. She seems to love doing them up as well as simply knowing that they are done up. She can’t leave a buckle unbuckled.  Currently, she enjoys walking around on her tippy toes and doing whatever her brothers are doing.

So I wonder, where on the spectrum might Aiden fall? Penny? Are they even on it? I don’t want them to face those struggles. And yet, I am not afraid of autism, it doesn’t hold the same intensity or fear over me that it once did. Rather, I wonder about them so that I might know them better, that I might support them better, and love them better. I wonder, because I know all the signs and live with an autism filter on my eyes 100% of the time.

Stuffed animals seated around the room, ‘watching’ their own personal ‘screens’

I recently heard a story a friend of mine tell, for a completely unrelated reason, about a little boy I’ve never met who gets so happy and excited that he bounces and waves his arms behind him. He’s very well-spoken; in fact, he’s almost like a little professor. Based on my experiences, I suggested that she mention to his mom that maybe he should see a pediatrician to be screened for ASD. My friend laughed, saying, there is no way she would want to be the one to suggest that to his mother.

I get that. I really do.

It’s a scary thing to say.

It’s a scary thing to hear.

But I’m now at a point where I am really asking myself, why? And how can I change that?

I asked Aiden’s preschool teacher four times over the past school year if she had any concerns about him. I asked specifics, did he socialize well? Listen to instructions? Make eye contact? I wanted to know. I will ask his kindergarten teacher the same questions. I am not worried about him. I am not concerned that he will turn out autistic. I just want to know what he struggles with so that I can support his teachers, work with him, protect his self-esteem, and help him build relationships. Exactly the same way I feel about Jake.

Penny will be two this September. If she all of a sudden develops regressive autism, I will be surprised. I would be sad, if I didn’t hear her call me Mom again. But it would not change my love, my hope, and my passion for her at all. I would, however, change the way I approach her struggles and her needs.

I want to be able to encourage parents that screening, that investigating, and that understanding their kids is a good thing. It’s doesn’t have to make you feel like a bad parent; it can actually help you to be a better one.

I think the fear comes partially with the feeling that someone else has to tell you. I wish that we could take that part away. The fear, and the feelings of judgement, inadequacy, and defensiveness. Autism Awareness campaigns just haven’t helped with that yet though. More than awareness, we need education, understanding, and acceptance, to the point where moms can talk about it in loving, kind, and accepting tones. And not just with other moms of children with disabilities.

In my house, we do stimming. We are loud. We hum, loudly, and we buckle things up. We love our visual schedule. All of us. I don’t know where we fall compared to other families. I do, however, wish we could encourage and talk with them.

On Therapy and Shame

We are looking for a new behaviour interventionist.  I think I may have found one.  I am hopeful.

We are taking a break from ABA therapy.

I am incredibly thankful for the interventionists who have come and worked with Jake and our family over the past two years.  They have been professional and kind, respectful and wise, and have taught Jake and me so much.  Now we are ready to move on.

I want Jake to learn more in-moment strategies and skills.  I want to avoid tiring him out further and adding to his stress.  I want to see him actually apply some better behaviour skills, rather that learning them, practicing them, and then forgetting or refusing to use them.  My plan is to have someone come and work with us twice a week for a while, once during the day for a few hours and once during the evening.  I want them to integrate and join with us in whatever we are doing that day, and help us negotiate the trouble spots.  I want them to slow us down, so that we have an outsider voice breaking the tension.  I want them to work with Aiden, my husband, and me as much as with Jake, so that we are all learning together how to function better as a family.

I am hopeful.

Really, I want to better support Jake when he is struggling.  I want to slow down my reactions so that I can think clearly and see what is triggering him.  I want to be able to think about autism and what I know about how he works instead of getting frustrated about the behavior and never dealing with the root of the issue.

I want to model for Aiden how to be a friend to Jake.  I want to model for Jake how to relate to his brother and parents.

I read this amazing blog recently.  AMAZING.  I took so much out of it.  She writes about everything I feel and articulates situations I completely relate to.  Her big point, however, is that our medical culture and history treats mental health as something to be cured.  This is not always in the patient’s best interest, as truly, many mental health conditions can never be cured.  Rather, we focus on therapy as a way to deal with, cover up, and mask the underlying condition.

I think that therapy can be incredibly helpful.

We will most likely do more therapy in the future.

However, I believe that therapy has to be done very, very carefully.  The goal of any intervention needs to be helping the person learn a skill that will make their quality of life better without demeaning or attacking their self-esteem or self-value.  Learning ways to communicate is so important.  Forcing children to repeat words that don’t empower them and leave them still unable to explain their intelligence does not help.

The adult autistic community has written much on this subject.  They have totally convinced me that one does not need to be verbal to be intelligent and one can be disabled and still be incredibly valuable in society.  However, when I encounter real life scenarios with other parents at a playground, for example, stigma, judgment, and ableism are prevalent in my town.

Just the thought of talking about autism with other parents is scary.  How do you say, my child is on the autism spectrum, I can see similarities in your child, can we talk about that?  I can’t.  I just can’t.  I can’t even say, I know that there are so many kids these days, with everything from autism to ADHD and everything in between.  What makes your kid special?

What I have learned about autism makes me want to change my community.  We are a lovely community.  Small, but not too small; Christian, but not overly religious; helpful but not too nosy.  And yet, we struggle to change.  I would like to see parents who step up to each other and encourage each other even when they don’t know each other.  I would like to see parents who can say, my child is autistic, it’s nice to see him playing with yours.  Instead of, why don’t you teach that kid some manners?

We need to change the way we look at each other on Facebook.  I know from experience, I have been in tears, and not known how to get help, and posted a status update that says something inane like, “so tired of cleaning, why do they make so much mess when they play.”  If I had actually been on the phone with someone, I would have been crying, explaining what went down that day, how my heart aches and I doubt my parenting, how I love my kids but feel like I’m failing.  We would have cried together, then shared a story, made plans to have coffee or wine sometime soon, and ended the phone call laughing and being made a little stronger.  Brene Brown talks about this idea in her book, The Gifts of Imperfection, when she describes how being vulnerable creates real relationships and conquers shame.

I would like to see dads who listen to moms when they say, “I think there is something going on with our child and I want to have them assessed by a pediatrician.”  I would like to see moms who say, “I can see you are grocery shopping with a child who struggles in busy stores, I get that and you are rocking this.”  I would love it if I could see friends be honest with each other and say, “I can see that your child is showing some autistic traits, you need to talk to someone about it and have your child assessed.  It does not mean you have done anything wrong, there is nothing wrong with getting support, and I will be here to go through it with you.”

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Line up of stuffed animals and toys on a couch. They are happy toys, ready for the day’s events.

I am trying to work all of these ideas together into some sort of presentation I can give to parents of autistic children or even parents in general in my hometown.  I don’t know how to go about it.  Ideas are welcome.  I want to help parents move past shame and fear, get the point that disability and differences aren’t things that change the value of our children.  Parents need to have that point so that we can teach it to our children.  I want Jake to know that being autistic is nothing bad, it’s part of his character, his struggle, that makes him who he is.  I want him to be able to ask for support and be himself without being ashamed or judged.

 

Why It’s So Important to Have the Assessment Conversation

Something that teachers and educators really struggle with is the conversation in which they have to tell the parents that they might want to have their child meet with a pediatrician and do some assessments.  To me, as soon as Jake’s preschool teacher said those words, or something similar, I thought, “He’s autistic.”  I don’t know exactly what other parents think.

There is something of guilt, of blame, of “you should have known,” in the suggestion your child is struggling to the point that it is time to bring in the professionals.  It is very, very hard for the parents.  It doesn’t come from nowhere; our society has long placed the responsibility for children’s behaviour squarely on parents.  If a child does not follow rules or expectations, it is presumed that somewhere along the line, the parents did not teach them correctly.  It is almost always presumed.  Often, it is stated directly with comments.  “If that was my kid, I’d straighten him out.”  “I wouldn’t allow my daughter that kind of free reign.”  “What that kid needs is some discipline.”

When it comes to autism, these comments cut deep.  For much of the 20th century, parenting, specifically mothering, was seen by psychologists, the professionals that is, as a major cause of autism.  Literally, bad mothers were thought to have screwed up their children to the point of mental health disorders.  Leo Kanner, the man who first described and labeled autism, attributed the symptoms to cold, unloving “refrigerator mothers.”  From the 1940s to 1970s, the leading expert in autism, Bruno Bettleheim compared the moms of autistic children to Nazis, and his research and descriptions were widely promoted by media.  Anyone who worked with autistic children in those years did not know any other theories.  In the 1980s, parents were starting to disagree with this theory, but it wasn’t until the late 1990s that it was actually replaced with other ideas.

Parents are often blinded by their love, their hard work, or their innocent ignorance.  They are afraid of what an assessment could lead do.  Disability?  Autism?  Mental health problems?  Diagnosis?  Fear can lead them to blame the teacher, the school, the other students, the EA.  The parents may be struggling with the child too, not knowing what they are doing wrong, what is wrong with their love, with their child.  They may have worked so hard up to this point that they are no longer struggling the same way, having routines that work and a safe place at home that doesn’t lead to the same behaviours that the teachers see at school.  The highly verbal and intelligent nature of many children with autism can act like a red herring, distracting parents from the struggles that their child has when in a group or in school.

Autism Speaks adds fuel to the fear by continually referring to autism as an epidemic, searching for a cure, and citing that autism can destroy families.  The help they provide is coloured with undertones of tragedy and their worldwide recognition gives them a powerful voice.  Their website is often the first place scared parents look to, and it was the first place I looked when the thought entered my world.

You see, what this adds up to is that it is hard for parents to hear that their child needs to be assessed.

It’s also really hard for educators to tell parents that their child needs to be assessed.  Some are simply too scared.  Some don’t know how.  But it is so important.

When a child in British Columbia has an autism spectrum disorder diagnosis, they and their families are given a set of keys.  They open opportunities like support, community, and acceptance.  They give money, new ideas, and release the guilt.  It is not my fault that Jake is autistic.  I did not do this to him.  I could not have loved him any more, can not love him any more.  He has my whole heart.

Art created by Jake

See, the thing is, almost everything we thought we knew about autism was wrong.  And being scared of assessments is wrong.  They are not going to change anything about children who are perfect but struggling.  They are going to help.

Children who are autistic and don’t know it have all of the same hardships as children who are autistic and do know.  However, the difference it made for us was so incredible.  I have the ability to give Jake more processing time when I talk to him.  I have the ability to make the house quiet or find a calm space for him when he is overwhelmed and shutting down.  I have the ability to recognize when he can’t communicate and not confuse that with being disobedient or defiant.  I have the ability to learn everything I can about how he works and use that to love him better and make the whole family function better.

Without assessing him, I would still believe he is rude.  I would think that he doesn’t listen when I ask him to do things.  I would think he needs more consequences for yelling while I am putting his sister to bed night after night.  I would think maybe we are just not enforcing the rules enough.  I would be so wrong.  I have been so wrong.

Without assessing his eyesight, I would not know he needs glasses to see.  Without assessing his hearing I would think he might have a hearing problem, especially when he doesn’t respond to his name being called.  Without assessing his rash, I would not know he is celiac.  Without assessing his brain, I would not know that he is autistic.

It changes everything.

Like the first time you look through glasses and you see that there are individual leaves on the tress.  Like the first time you feel truly healthy after living gluten free for a year.

Like the first time your mom tells you that she knows you are overwhelmed, doing your best, and you need a break instead of a time out.

It changes everything.

I just really want to encourage parents to get over their fears and their innocent ignorance.  We fear what we don’t understand, and autism is something that we can understand and appreciate and love.  I want to encourage teachers and educators to get over their fears and speak love and truth to parents who desperately need to hear it.  An assessment is not the worst thing.  It is a beginning of a quest to know and support and love your child better.  This is what I want to explain to people.

Have courage.  Find and speak truth.  Grow love and understanding.

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.

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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

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Thoughts on Celebrating Autism

Amythest Schaber is quickly becoming one of my heros.  She is incredible, Autistic, and well spoken.  Even cooler, she is from my province and there is a remote chance that one day I might actually get to meet her and thank her.  Yesterday I had the chance finally to watch her keynote address, The Celebration of Autism, at the Richmond Autism Resource Fair 2015.  I knew it would be good.  It’s long, 21 minutes, so I had to wait until I had time to watch and listen undisturbed, but it is incredible.  If you would, if you could, please watch it.

I want especially to share some of what she said with you, as it resonated so strongly with me.

You have to watch out for tolerance.  It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on”.

It’s important because I have been raised on tolerance.  I have been educated with tolerance.  Tolerance is so tricky and it is wrong.  I have taught in classrooms where I worked with tolerance as part of my foundation.  It was out of ignorance and misunderstanding, not because that is what I wanted to do.  Tolerance looks at what is wrong with a person, their situation, their behaviours, their choices, and looks away.  It doesn’t understand, care for, or love anyone.

For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the Autism, to mould a non-autistic child from an autistic one- the idea of accepting Autistic people as we are is outlandish to them. To these people then, to celebrate Autistic people, and even Autism as a neurotype, is disturbing…

The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.

This is radical.  And I can see it.  Celebrating with Jake when he is celebrating is enough to convince me.  There are a few things here that I haven’t written about on this blog before that I want to address quickly.  First is ableism.  This is the idea that being disabled or able-bodied is somehow a difference that should be exploited, the same way that sexism, racism, or ageism separate humans into classes that have different worth.  It is a term that I had never encountered before I dove into Autistic culture and started reading.  Certainly, I have been guilty of ableism.  Learning about it is opening my eyes to the prejudice that exists, even within myself.

The other thing is this idea of changing an Autistic child into on that blends in, that is non-Autistic in any noticeable way.  It is an idea that is entrenched, promoted, and wrestled with in Autistic writing.  I am now firmly in the camp of ‘that’s a terrible idea,’ with the caveat that any strategies that help Jake cope and succeed are worth learning and fighting for.  The motivation always needs to be his happiness, esteem, and personhood, not my comfort or embarrassment.

To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.

I do not, nor will I ever, expose Jake to the public as a disabled person.  I do not want to hold him up as inspirational, nor do I want to embarrass him.  However, his struggles are real and if or when he wants to share them, I will support and stand beside him.  Right now, my motivation is to help change culture and tolerance into something more meaningful; acceptance and a truly inclusive culture.  Difference and disabilities are real, and they continue to be a source of bullying and negative self esteem, as well as the scary list Schaber has put together.  Dissolving these ideas in the public will make Jake’s future brighter and safer.

I am amazed, when I find people who should be like me, who are also parenting incredible Autistic children, they are quiet.  We talk quietly, about things that are a struggle and things that we have in common.  We don’t talk about ableism, about neurodivergence, or about acceptance.  It is so strange to me and quite frustrating.  There is a hesitance to say it out loud.

It is this hesitance that continues to hold up that last holdout Schaber mentions.  We have to push through our fear, our cautious quiet, and actually use positive words to expose the shame, intolerance, and hate.  I have a few friends who get it, who see what I’m seeing and hear what I’m saying.  They are a good, safe sounding board for me.  It’s a start.

Amythest Schaber’s blog is here.

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.

Sesame Street: See Amazing is Amazing!

It’s been almost exactly a year since we received Jake’s ASD diagnosis.  I feel like I have grown and stretched more than I would have thought possible.  I have so many more ideas, so much more patience.  I have so many more conversations about autism.  I think about parenting so differently.  I think about children so differently.  I have examined my heart, my faith, my marriage, my family, my attitudes and my choices.  I have been like the heart that broke, and in doing so, opened up wider than was possible before.  Much wider.

Today I had time to spend checking out Sesame Street’s new autism initiative, See Amazing.  I watched every video.  I cried.  I opened every link, every pdf, every helpful hint.  This is, strangely enough, a wonderful time to be autistic.  Better than ever before.  And by extension, a wonderful time to be parent to one of these incredible children.  There is love in a website.  There is truth in a video.  There is compassion and understanding in strangers’ voices filtering across the internet.

I want to share every one of Sesame Street’s videos.  I want you to watch all of them.  They are short, I promise.  I want everyone to watch them.  I am so thankful for them.  Truly, a huge impact is going to be made.  The one that hit me the hardest was one titled Nasaiah’s Day.  Watch it right now.  I’ll wait.  You can click right here.

This could have been about Jake.  The mom and dad could have been us.  I saw Jake in every second of that video.  The only difference was that when Jake was four, we didn’t know anything about autism and we had no plan, no support, and things were not going that well.

Sesame Street’s videos show several different families, with several different faces and different presentations of autism.  It’s wonderful.  It shows something that I can relate to, cry over, and connect over.  It’s not about labels.  It’s not about explaining all of the intricacies or therapies or anything.  It’s about loving kids, about celebrating what is amazing about everyone, and about being compassionate and open to having friends who are different from you.

I cannot turn off my joy.  Kids who grow up with these messages will be less likely to bully others who are playing alone.  Kids who grow up with understanding and compassion will be more likely to befriend and welcome others and be patient while getting to know them.  This is something that will make Jake’s world less frightening, less cruel, less unfriendly.  I know I am optimistic.  It’s so good to be optimistic.

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.