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.

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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.

 

On Teaching and Encouraging Acceptance, Not Judgment

Parents of disabled children have to make a lot of choices.  Choices like whether to take your kids out to the playground or to a Strong Start class, or whether to attempt preschool with your child who is atypical, are serious, heavy questions that require much consideration.  It’s a scary thing, to be that parent, to be watching your child like a hawk, to see if they are going to bolt, racing across the grass, straight towards the road, eyes on some speck in the sky or a truck in a parking lot down the road.  To watch them, waiting for that moment when they shove another child who didn’t realize they were in the way of an inexplicable game that is known only to one, or for those tears to fall when that nice orderly lineup of pebbles is upset when some toddler meanders through it.  You watch, to see if your child notices others, if they want to join in a game, if they need space, quiet, shade, a safe refuge, if they are becoming ashamed or nervous, or if they are courageous and actually enjoying themselves.

And on top of that, you wonder about the other parents.  What will they think when my son runs away screaming.  Will they think I can’t control him?  I can’t.  Will they even realize I’m his parent?  What will they say when he pushes their princess off the play structure?  Clearly, that’s not okay, but what do they think?  What should I say when my friends, kindly, say, gee, he sure does keep you busy.  Or worse, when a strange dad snaps at me: “Teach him some manners!”

These things have all happened to me with Jake.  Every one of them.

But not today.  Today I took all three of my kids to the playground.  They had a great time.  Jake went down the slide three times with Penny, holding her hand, side-by-side.  They both loved it.  He climbed the structure and watched out for everyone else.  He always knew exactly where Penny and Aiden were.  He watched some older kids come and start a game of grounders.  I could see that he really wanted to join in, but he didn’t say anything to them.  After a while of playing around them, he moved on and played with his almost two-year-old sister.  It was a great day.

I watched.  The same as always.

I saw another little boy come up to the playground with his dad.  He was wearing a teddy bear back-pack/leash that I would totally have judged as terrible before I had children.  He seemed to like it.  Once they got up to the playground his dad unhooked the leash and off he went.  On tiptoe.  Through the gravel.  Then once he reached the shade, he just sat down and started playing with the pebbles.  None of the other kids gave him a second glance.  No one came over and said hi.  No one was at all bothered by him.

I smiled at his dad.

My son is almost seven.  This little boy looked to be about three.  I wanted to go say something.  Like, hi.  Looks like you are doing awesome.  I’m so glad you brought your son to the playground.  Would you like me to introduce him to Aiden and Jake?

I could not figure out what to say without sounding or feeling totally awkward.  But I have been thinking about it all day since.

The internet is really wonderful.  Without it I would feel quite isolated, I think, in the autism world.  I have read extensively online and found it incredibly valuable.  However, the lightning fast spread of ideas has also been hurtful.  Recently there have been terrible tragedies where young children have died or been injured in incredibly unusual circumstances, and the reaction online has been so harsh, judgmental, and hateful.  There have been neighbours who have called in authorities when children are playing in their own backyard.  People are so quick to turn on each other, to call out the faults in each other’s parenting.  It has led to a culture of fear in parenting.  It has led to second-guessing and doubting my instincts.

I don’t even know how to say hi to a stranger in a park.

We have this ideal of what parenting should look like.  What children should look like and play like.  We have averages and standards and graphs and handouts suggesting strategies.  It all adds up to feelings of inadequacy and striving to meet that ideal of normal.

And then something comes along and stirs it all up like an autism diagnosis in the family.

All of the research and money and support says: here are ways to help your autistic child strive to appear normal.  Best results if you do all the work yourself.  Best results if you put in 40 or more hours a week before they reach age five.  Then, you might be able to pass off your child as typical by the time they reach high school.  You might be able to hope and dream for them to achieve a position on a sports team, or a date for the prom.  Maybe one day they might get employment.  The whole world will cheer for them then when you share it online.  Don’t think past that.

This is very harmful thinking.

It creates impossible standards.  Which lead to failure, which leads to depression, self-loathing, and anxiety.  And that is just thinking selfishly about the parent.  On a child with autism, this creates a pressure to conform.  A pressure to live up to the insane effort mom and dad are putting in, to not let us down, to learn to pass as normal so that we can be proud of you.

As if losing what makes you autistic is what you need to do to be loved.

Now, I know those ideas seem exaggerated and that regular people think that they don’t actually do that, they are not actually perpetuating that, and being unique and individual is okay.  But what about that dad who snapped at me at the playground years ago? What about my friends, who don’t have any idea what to say or do with me when I “meet” them at a playground and spend an hour chasing my son away from the road?

It’s complicated.  While I get that safety is the most important, we need to change the way we respond to people.  We need to change the way we create safe places.  We need to change the way we react to other people and their kids.  We need to fence our playgrounds already.

I want to teach my kids to reach out to and play with other kids who appear different.  I really wish I had said something to them today, like, look Aiden.  That little boy likes playing with rocks.  Why don’t you go play with him?  I want to teach my kids to notice when someone clearly wishes to join in the game.  So kids like Jake don’t have to spend 15 minutes trying to figure out how to get involved only to give up.

As a response to the racial tensions in the USA, I saw a meme of two children playing.  One was white and one black, and it read, Children will play with anyone until someone tells them not to.  The truth of it struck me deeply, but I can see how it applies not only to racism but to ableism as well.  Somehow, we teach our children to judge, to fear, and to avoid that which is different from themselves.  They learn it from their parents and other adults.

Here in our house we are working on trying to avoid calling each other names.  Jake recently has called Aiden, smelly, stupid, fat, dumb, and various other insults.  We are really trying to explain that those names mean things that are not okay.  That we don’t think about other people in those negative terms.  If we are angry, we can say, I’m mad at you!  Or I don’t want to play!  When I was little I remember using the r-word regularly.  Times have changed, and I feel that to say someone is dumb or stupid is just about as terrible.  My kids are going to learn that intelligence is varied, people are varied, abilities are varied, and that everyone is valuable and worthy of friendship.

 

My Perspective on Autism

I have been working through a course on Autism training for EAs in an effort to collect a few, final credits and learn more about Autism and ways to support and help Jake.  As it is winding down, we were asked to write about our perspectives on autism and if they have changed.  Mine really hasn’t, but I enjoyed and appreciated the opportunity to write about what I feel so passionately about.  It is World Autism Awareness Day and it is Autism Acceptance Month, so I thought I would share it here.


 

My perspective on autism is shaded deeply due to my deep love for my son who is autistic.

I have come to have a deeper understanding of how difficult it is to negotiate the myriad of students with ASD and the other students with special needs and it has increased my appreciation of the teachers and EAs who work with my son.

Things that have not changed for me have become more clear.  I understand that my role in my son’s life is to be his advocate, support, safe place, and cheerleader.  I understand that the position I have as a teacher grants me a very special opportunity to teach inclusion, compassion, and acceptance.  I will be a person who treats disabled people with dignity.  I will teach my students that they are valued, valuable, and worthy of dignity.  I will model how I hope the world will be for people with disabilities and autism.  I will talk about ableism and how we think and view those with different needs.  I will talk about the social model of disability and ways we can be more accommodating.

I have come to a deeper appreciation of how many scientists, psychologists, and experts in the field of autism have been wrong.  Wrong assumptions and wrong science have left deep wounds in the Autistic community.  Vaccines, lack of empathy, inability to learn, refrigerator mothers, parenting mistakes, are just the tip of the iceberg.  Treatment in the past has included electroshocking children, removing them from loving families, and using food and hunger to force assimilation.  It’s no wonder that getting an autism spectrum diagnosis so often leaves parents terrified and in tears.

I will talk about the negative stigmas that follow autism and why they need to be left behind.  I will talk about fear and presuming competence even when people do not communicate traditionally.  I will model patience and explain how behaviour is communication.  I will advocate for employment opportunities for adults and youth with ASD and ways to include adults with autism in our schools.  I will listen to the Autistic community, carefully and attentively, so that I can be able to stand with them.  I will encourage my son to embrace who he is and to learn ways to be successful without pressuring him to pass as neurotypical.

I need to be an advocate for neurodiversity, and the more I understand about it, the more confident I become.  I need to listen in order to participate in discussions meaningfully.  I need to be a support to other parents and educators as they learn and discover how many of our previous understandings about autism were wrong.

My perspective on autism is that it is human and it is beautiful.  It is hard, and it can be painful.  However, it can also be joyful, passionate, compassionate, and smart.  It is incredibly valuable.

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

Stimming and the Benefits for People with ASD

I have not had a lot of time to write for my blog.  My husband and I have been taking an online course on Autism which has required most of my writing time.  I did have to write a research paper for the course, and I thought I would share it on here since I put work into it.

As a requirement of the course, I had to use person-first language, which is not my preference.  Please do not read this and think that my opinions on that issue have changed.

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Reading through a number of written works by individuals with autism creates an awareness of how important it is for them to be able to self-stimulate, or stim.  The stimming is an important part of being for people with autism, and the efforts of the population with typical neurotype to restrict, restrain, or limit stimming is harmful to people with autism.  The stims are incredibly variable and serve many functions, making life happier, easier, and less stressful for people who find the world often overwhelming and difficult to understand.

The world can be hard to process for people with autism, and stims can help by providing a way to self-regulate, to gain control of one’s own sensory input.  There are many ways that this happens.  One is through regulating emotions. According to The Stimming Checklist (n.d.), “Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” Positive emotions also elicit stimming in most people with autism.  Many adults with autism report relying on stims to help them regulate during social situations.  Social interactions, even after years of supportive therapy, can be very difficult for people with autism, and stimming is reported to allow them to participate in more varied situations, with more people and stimuli, for longer periods of time.  The sensory processing difficulties that accompany autism can be regulated by stimming, creating a way for people with autism to create their own sensory input.  This can result in greater sensory input when needed, or a sensory distraction when there is already too much sensation around that is out of the individual’s control.  Finally, a pragmatic regulation in an attempt to be considerate around other people can be a reason for stimming.  For example, “In a crowded lecture hall with a fascinating speaker, we might want to jump up and down with excitement and ask a million questions because we are so engaged, but if we believe this will not be helpful to ourselves or our classmates in the long run, we might choose a stim like twirling our pens or rocking in our chairs to remain focused and engaged without disrupting others” (The Stimming Checklist, n.d.).

People with autism report that efforts to curb their stimming are painful and result in more trouble than the stimming itself caused.  Emma, a poet who relies on alternative communication describes stimming as self-care, she says when asked to stop stimming, “it makes thick feelings worse.” (Zurcher, 2012).  Adults with autism report feeling that the “therapy” they were subjected to as children in order to learn how to pass as less autistic left deep emotional scars.  Feelings of shame are connected to the belief that stimming is wrong.  People report that stilling their stims leaves them open and vulnerable to the assault of daily living in a world that is too much to handle.  They also report that the negative emotional associations and judgment that society places upon those who stim break down the self-esteem and self-worth of individuals.  Julia Bascom (2011, April 5a) describes it as:

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet. They grab our hands, “don’t do that, people will think you’re retarded.” They smack away picking fingers, because our foreheads must be pristine and easy-to-look-at for them. You turn away, pull away, try to put some distance in so you can breath, and they grab your hands, your hips, your shoulders and twist you back. You bounce your leg—surely you are allowed this?—and they press a hand to your knee, stilling you. Everyone taps their pencil, but when you start their hand closes over yours and won’t let go.

 

This is the opposite of how students in class should be made to feel, regardless of whether they are dealing with a disability or not.

Self-Injurious stims are often cited as the reason to stop stimming altogether.  Many people with autism do hurt themselves or injure themselves when stimming.  However, the idea that people with autism need to suppress their autistic nature and pass as people with typical neurotypes creates additional stress on already stressed nervous systems.  People with autism are dealing with a minefield of sensory assaults and attempting to appear different from their inner nature can be more than they bear.  Bridget, a person with autism, states that these behaviours are often a result of students “passing,” or forcing themselves to appear as if they do not have autism. She tries to follow instructions to stop stimming but finds that the need does not disappear. She writes, “Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left” (It’sBridget’sWord, 2012). A better solution to help students who feel the need to injure themselves is to be proactive and give them space and acceptance to stim safely in public, openly, as they feel they need to.  That way, perhaps more of their defenses can be strengthened and they would not feel so vulnerable.

Some research supporting the idea that stimming should be stopped suggests that it is harmful to learning and focusing.  It certainly can be distracting to others in a classroom, and the inclusive model of education creates opportunities for students with autism to annoy and disrupt their classmates.  An online search of how to stop stimming comes up with many results and reasons to “help” children with autism conquer their need to stim.  The May Institute (n.d.) pontificates,

Self-stimulatory behaviors may seem harmless. But for children and adults with autism who lack social and self-regulatory skills, these behaviors can interfere with learning at school or completing daily living activities at home. They can also be disruptive and upsetting to others, causing them to avoid or ostracize the individual in social settings.

However, in reality, there are many stimming behaviours that are not disruptive and actually help students with autism learn.  One adult with autism writes about stimming and focus, describing it like an itch that unless scratched continually distracts and derails focus.  “If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch” (MusingsOfAnAspie, 2013, January 3).  There is also research supporting this idea.  Studies have been done that show that when a person is abstaining from something that they want (need), they have a more difficult time concentrating on a task (MusingsOfAnAspie, 2013, June 18). Students with autism struggle with executive function, and when they are using their brain to stop stimming, they are unable to use it for learning and focusing on the tasks that are being asked of them.  In a classroom, students with autism should be taught socially acceptable behaviour and stim options, and the rest of the class should be taught how to accept and understand the learning needs when in a diverse class.

  
A school environment is precisely the place where social acceptance needs to be taught and modeled.  People who are concerned that the stimming child would be isolated, bullied, or alienated need to work on changing societal attitudes.  Kirsten Lindsmith (2014) describes having a hard time making friends with “same age neurotypical counterparts,” but says that, when she allowed herself to express her personality, she made close friends with a student with ADHD. She recollects fondly, “We got along swimmingly and stimmed together, repeating phrases and sounds and generally torturing our poor math teacher.” Children are adaptable and learn acceptance just as easily as prejudice, so teachers and Education Assistants have a responsibility to demonstrate and encourage friendships with students with autism.

Perhaps the best and most natural reason for stimming is the pleasure it expresses and creates.  Many people with autism have written about dealing with intense sensory input, and the intense joy they feel when they are stimming.  Joy and stimming seem to be inextricably linked; there is joy when stimming, and stimming when there is joy.  The words of adults on the spectrum need to be the authority on this topic, as they share what those of us who are not on the spectrum cannot truly understand. Julia Bascom (2011, April 5b) says that she feels that stimming is a benefit of autism, as it allows her to experience the world in a more enjoyable way. She sees others around her feeling “miserable” because they feel constrained by the need to follow social norms, while she is able to “amplif[y]” her enjoyment of the world through stimming. Reflecting on stimming, she writes,

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

Creating a positive, inclusive, and understanding setting by accommodating this need to stim benefits the student. This, in turn, can help create a happier classroom environment for other students, teachers, and Education Assistants.

Stimming is a powerful drive among people with autism, and it is a productive way to deal with the onslaught of sensory inputs they experience every day. Adults on the spectrum need to be the authority, as they are best positioned to describe the desire to stim as well as the positive benefits. They explain how it helps them calm down, focus their minds, and put themselves in a better mindset for learning. Attempts to stop this behaviour can cause emotional damage and a buildup of overwhelming emotions for students who are expected to “pass” as if they do not have autism. Stimming can also be a source of overpowering joy for students, and we should not deprive them of this beneficial aspect of autism to conform to social conventions that are built on an illogical “one size fits all” model.

 

 

References

 

Bascom, Julia. (2011, April 5a). Grabbers [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/grabbers/

 

Bascom, Julia. (2011, April 5b). The obsessive joy of autism [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

 

Harris, T. J. (n.d.). Reducing self-stimulatory behaviors in individuals with autism. Retrieved from http://www.mayinstitute.org/news/topic_center.html?id=355

 

It’sBridgetWord. (2012, October 7). Self injurious behaviors [Web log post]. Retrieved from http://itsbridgetsword.com/2012/10/07/self-injurious-behaviors/

 

Lindsmith, Kirsten. (2014, May 16). Stimming 101, or: How I learned to stop worrying and love the stim [Web log post]. Retrieved from https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

 

MusingsOfAnAspie. (2013, January 3). The high cost of self-censoring (or why stimming is a good thing). Retrieved from http://musingsofanaspie.com/2013/01/03/the-high-cost-of-self-censoring-or-why-stimming-is-a-good-thing/

 

MusingsOfAnAspie. (2013, June 18). A cognitive defense of stimming (or why “quiet hands” makes math harder) [Web log post]. Retrieved from http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

 

The Stimming Checklist. (n.d.). So what is stimming? Retrieved from http://what-is-stimming.org/so-what-is-stimming/

 

Zurcher, A. (2012, January 2). An Interview with Emma about stimming [Web log post]. Retrieved from https://emmashopebook.com/2014/01/02/an-interview-with-emma-about-stimming/

 

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.

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.

Observations and Reflections from Halloween

Halloween was interesting.  This year, Jake he decided that he liked scary decorations and actually wanted to put some up in our yard.  I declined.  He wore a Chewbacca costume with a mask.  That he loved.  A mask!  Covering his entire face.  This is incredible to me.  His first Halloween he was a tiny baby and I put him in a tiger pajama set.  When he was one he wore a turtle outfit that was soft and warm and he had no choice about.  When he was two he wore a full monkey costume that I picked out again.  He didn’t love it, didn’t get it, and never wore it again.  Then when he was three and four he wore a hooded sweater with an animal print on it with no face paint and only my word that it was a costume.  Truly, he looked adorable, like adorable Jake in a sweater.  When he was five I carefully prepped him and set him up in a fireman outfit.  It was simple and easy and he practiced at home even a few times.

When he was three and four he didn’t once wear pajamas to preschool on pajama days.  He has never done his hair crazy on a crazy hair day.  He has not worn a career day costume, a twin day costume, or a hero day costume.

But this year he wore a full Wookie costume.  And he loved it.

Our little family had joyfully trick or treated to about 8 houses in the neighbourhood when he slipped on a patch of wet cement and fell down.  He dissolved in tears and lost all control, all joy, all peace, all hope of continuing.  He had to go home and spent the rest of the evening answering the door and handing out candy with his sweet Oma.

Aiden continued trick or treating another 40 minutes or so.  It was a blast.  He was so thrilled and we enjoyed the time with just him immensely.  I am getting better at seeing what Jake needs to be happy is just different, and that it is okay so long as he really is happy, and he was.

When they were reunited, the boys exchanged stories about the other trick or treaters they had seen and ate some treats.  Aiden had so much more candy that I poured all of it into one big bowl and declared it was for them both to share.  Mom’s word is law here, and they accepted it without any problem.  After all, they were eating candy.

I am left in awe and wonder at the whole event.  The differences between my two sons seem to be increasing right now.  Despite Jake’s growth, progress, and maturation, Aiden is always going to be the one who wants to be out later.  He will be the one who wants to join the baseball team, to go down the waterslide.  Aiden will be picking between girls in high school.  Aiden will be popular, confident, athletic and social.  Aiden will have three times as much candy.  Aiden will have a date for the dance.  Aiden will not need me like Jake does.  He will need me, but it will not be the same.

It’s a blessing, to be sure, that Jake is autistic and doesn’t notice all of this yet.  By the time Aiden notices, he will be older and I am praying, he will be deeply compassionate and loving towards his brother.  I am praying for a strong and true friendship between them, that when they get to middle and high school, that they can support each other, be friends with each other’s friends, and stand beside each other through their tough times.

Aiden hit the pillow Halloween night and fell asleep to peaceful dreamland instantly.  He’s so much like me.  Jake lay awake, replaying the day, I’m sure, and listening to us downstairs as we answered the door and continued to give candy to the stragglers.  He couldn’t sleep until I had told him what their costumes were.  They are so different, my boys.  And I love them both so much.

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.