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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Empathy round 2

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

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

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

– Social cluelessness

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

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

– Ing, site-author

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

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

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

– Maurice, Aspie from Scotland

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Eye Contact

Jake is sick.  With a fever.  He is whiny, sad, tired, and sick.  Of course, he wants his Mom.  I am spending more time than usual snuggling, calming, soothing, holding, whispering, and reassuring.  And for once, I am appreciating it more.  We are getting closer than we usually do, he and I.  I am being more patient, and he is asking for me more.

This afternoon he asked me to lie on the couch with him and snuggle in close.  Our faces were so close.  I counted his new freckles.  I stroked his unruly hair.  I whispered to him that I love him.  And I looked into his eyes.

He has the most amazing eyes.  They are brownish greenish with flecks of gold that seem like they are constantly rippling like a pebble in a lake.  I gazed into them and was lost, lost in love and emotion.  Truly, I could see how deeply he loves me, how intensely he needs me.

What makes a moment like this so special is its rarity.  Jake’s autism results in eye contact being difficult for him.  He actually looks into my eyes quite often, but only for brief glances.  He looks into his Dad’s eyes, and into a few special extended family members’, but that is about it.  At school, lack of eye contact is something I hear about a lot.

This isn’t usual.  The Indiana Resource Centre for Autism describes how feeling comfortable and confident in a situation increases many individuals with autism’s ability to make eye contact.  In situations where there are too many stimuli or there is anxiety, it is much harder to make eye contact.  I have also heard that the connection between people when they make eye contact is too intimate for many people with autism.  It feels uncomfortable, like being naked or exposed.  In a moment like the one I had with Jake, it certainly felt intimate to me.  We were connected and I felt deeply in love with my baby.

There is a big push to teach autistic people to make eye contact.  This is because our eyes convey so much of our social language.  People communicate with their eyes, and if you are missing that, you are missing out on a large part of a conversation.  There is also the idea that we give eye contact to people when we are listening or paying attention to them.  Therefore at school, teachers look out to make sure the students are looking back when instructing.  It is this eye contact that lets the teacher know that the students are paying attention and learning the lesson.  This is where the phrase, “Look at me,” is heard the most.  Parents and caregivers also do this a lot.  I know we do it here.  It’s the root of the “whole body listening” concept.  If you are listening and paying attention, you are turned to face the speaker, you are not distracted by other things, and you are looking at them.

However, the question is, is making eye contact necessary for paying attention?

What if it is too intense?

What if it simply doesn’t work for a person?

A number of “higher functioning” folks who have autism have described difficulties with making eye contact. One of the more humorous explanations was shared over lunch with a brilliant, well- educated, 45-year-old man who has Asperger’s Syndrome. With a mixture of cynicism, good humor and pleading for understanding, he discussed his difficulty with making eye contact, but even more to the point, with expectations that he “read” and respond to the subtle socioemotional messages conveyed via the eyes. In summarizing his message, he said, “If you insist that I make eye contact with you, when I’m finished I’ll be able to tell you how many millimeters your pupils changed while I looked into your eyes.

http://www.iidc.indiana.edu/?pageId=472#sthash.bczHRBhN.dpuf

I love this story.  It is absolutely what I imagine Jake goes through.  I am coming around to the idea that I do not actually want to pressure Jake to make eye contact if it is uncomfortable, too intimate, and does not actually accomplish any additional communication with him.  The Daily Beast wrote:

To a neurodiversity proponent, autism is a social problem. That is not to say that autism is fundamentally a problem with social skills; rather, it is a problem with society’s lack of tolerance for the range of thought patterns and behaviors that characterizes autism. A neurodiversity advocate might say, for example, that autistic people should not be forced to learn how to bring themselves to make eye contact… The rest of us could learn to understand that lack of eye contact is not necessarily rude or weird but is part of the range of acceptable behavior. More than that: We could value the unique insights the autistic mind has to offer.

http://www.thedailybeast.com/articles/2015/02/25/they-don-t-want-an-autism-cure.html?via=desktop&source=facebook

Wow.  This is where I am coming to.  I want to find an alternate route to communicate with Jake, for those times when he can’t look into my eyes, or into his teachers.  There needs to be another way for him to show that he is listening, perhaps by turning his body, or offering a simple “Got it.”

As well, I want to help create a world where eye contact is appreciated, and yet, not required for social interaction.  I want Jake to be able to have friendships with his peers and work with his teachers and have them understand that he just can’t offer that all the time.  I think this is so important, and so easily done.  I would hate to have people demand that I feel exposed all the time.  All it takes is some education and understanding.