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/

 

Fries with Trust, or Trust with Fries

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

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

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

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

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

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

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

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

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

Breathe, mama.

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

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

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

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

I will need to breathe more.

Pity Party

  

Yoda driving a speeder of Jake’s creation
  
It’s not fair. It’s not fair that my autistic kid doesn’t understand the difference between squirting the adults with water guns and dumping a bucket of water on his uncle’s lap and therefore phone. But even more than that, it’s not fair that when it sprays back on him he gets totally overwhelmed and overreacts. He ends up enraged, embarrassed, and confused about what went wrong. That’s not fair.

I want to hold him and comfort him and explain to him what went wrong. I want it to make sense and for him to be brave enough to try to squirt his uncle again. I want him to have fun and have it not be complicated by autism. I see his struggles and it is so hard for me. I just love him so much. He’s so amazing. It’s not fair.

I get sad sometimes. I get sad when I see him sad or angry. Boy, was he angry. He told his uncle, “I don’t want you to come to my sixth birthday, or my seventh. You can come to my eighth, but I will frown at you every time I see you!” Adorable, hilarious, and furious. It makes my heart hurt. I hate it when he loses control and feels like the world is wrong.  

It’s not fair.

It’s also not fair that he can’t keep his hands off of me when we are next to each other. He loves me so much. It’s so sweet, and so full of love and heart. It is too much, however, when I am trying to eat, or feed Penny. It’s too much, when he crawls under my skirt in the church foyer. He can hardly handle me touching him, and my hugs are so gentle, but he is all over me.  

It feels like a weight, like a heavy burden that he carries. Being autistic, being overwhelmed, being stressed, being strung out with adrenaline all of the day. It is heavy on my heart. I feel so guilty, for all the times I didn’t know he was autistic and I reacted poorly or too severely to his meltdowns. I wish I had known sooner, that I could have understood more sooner. I know I would have handled things differently. I just did my best, but it really wasn’t good enough.

Okay, pity party over. I will be stronger. I will be kinder. I will be smarter. I will be what he needs. I will figure this out.

Verbal Stimming

Jake loves to talk.  Seriously loves to talk.  This kid just will not stop talking.  I am thankful and blessed that he is verbal; when he was two, I wondered if or when he would start to talk.  By age three, I was relieved that he had a few favorite words and some very short sentences.  I would never have called him expressive, however.  Something happened though, between ages three and four.  Jake really started talking, and he has not stopped since.  There have been many, many nights when we have gone upstairs, late at night, to kiss his head while he slept, and marvel at how quiet he was, because it is never, never quiet here in the day.

I first wrote about his talking here.  I have been looking into the idea that Jake is a verbal stimmer (see below for definition).  I have watched him a lot.  When kindergarten started, he was chewing on pencils constantly, but I have never seen that at home.  I have never seen any other real stims of any kind, though (for example, hand flapping).  After his diagnosis, I started looking for them, but most of the stereotypical, obvious stims have never been a part of our lives.  I counted myself lucky, and moved on, but now I am taking another look.

He really just cannot shut up.

Not at all.

He is getting better at waiting until we are ‘available’ to talk to him.  But he often just goes off talking anyways, whether we are paying attention or not.  There are times every day when I ask him to just be quiet for a minute, just a second, so I can hear what his soft-spoken little brother is trying to tell me.  Thankfully, Aiden is becoming less soft-spoken all the time.  But the noise level in our house is insane.  Penny could sleep through a rock concert, I am entirely confident.  She is trained for it.

So what is verbal stimming?  It is a couple of things.  Jake finds joy in talking.  I don’t know if it is the sound, the feel of the vibration in his throat, the movement of his lips, or some combination.  But there are many times a day when he is just so happy to be talking.  Often way louder than any situation in our little house could possibly require.  This fits with what I have learned about stimming.  It is something autistics do for happiness—apparently, an incredible happiness that is self-controlled and almost impossible to restrain from.

The other thing about verbal stimming is that it can be calming and soothing for Jake when he is upset.  He could be upset by anything or everything, and he gets loud.  If he is upset because he sees that Aiden is hurt, I get a run-on, loud, lengthy, cannot-be-stopped-or-interrupted explanation of the event in super detail on repeat.  If he is upset because there is a noise that he is bothered by, he may cover his ears, but he will often also start singing loudly.  If he is upset because he is hurt, angry, frustrated, annoyed, or impatient, he will whine or cry, often with words.  He cries over things that seem like smallest problems and screams over scraped knees.  I have tried all kinds of things to help him calm down, from deep breathing to deep pressure to movement to distractions.  The most effective, and often the hardest for me to do, is to simply let him cry it out.  The more I try to get him to stop crying, the more frustrated he gets.

I found this description of stimming really helpful.

Sometimes stimming releases pressure—especially the good kind of stimming. Sometimes a stim will help us focus to block out invasive and overwhelming sensory input, becoming an essential coping aide.

It’s a type of self-soothing, whether one needs to be soothed because something is just too cute or because that ambulance siren is just way too loud, the root cause is essentially the same.

In my opinion, the question shouldn’t be why autistic people stim, it should be why do autistic people stim in such a specific way. Not every autistic stims, and not every autistic person shares all the typically autistic stims. I’m a finger waver, but I’m not often a hand flapper. I have a vast number of vocal stims, but I’m not usually a rocker or a bobber. I know hair-twirlers who rock back and forth. I know knuckle-crackers and foot-tappers who don’t wave fingers or flap hands. Every autistic is as unique as her own personal stimming lexicon.

Neurotypical people stim too! Some notable neurotypical stims include tapping fingers or feet to music, stroking the face when stressed, or rocking in a rocking chair.

https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

A funny thing about that is that I totally get it.  While I don’t cry over Lego that just won’t stay together in super elaborate creations, if I am actually crying, it’s incredibly difficult for me to stop.  Once the emotions and sounds and tears start coming, the release is so powerful.

The Teenage Mutant Ninja Turtle Lego minifigures carefully lined up with some of the other favourites from our house.  (Photo credit, Jake)
The Teenage Mutant Ninja Turtle Lego minifigures carefully lined up with some of the other favourites from our house. (Photo credit, Jake)

Autistics have been very helpful explaining stims and how important they are.  One, Anabelle, says this,

I benefit greatly from vocal stimming. It keeps me more in more control of my physical body when I am overcome by miscommunications, anxiety, and too much of everything.

BUT it really does attract a lot of attention.

When I vocally stim, there isn’t much warning, and I have very little volume control. I try hard not to be too close to someone if I think I am going to be loud, for the sake of their hearing. But it’s difficult for me to control.

http://www.anabellelistic.com/blog/way-to-stim-wednesday-vocal-stims

I watched this video called, “Ask an Autistic – What is Vocal/Verbal Stimming?”  It was amazing.  If you have a few minutes, please watch it.  It’s well done, hopeful, encouraging, and so, so good!  I loved so many things about this.  One was how lovely this speaker is, Amythest Schaber, how sweet and autistic.  Especially if you don’t know many autistic people, this is a nice example of how real and nice they are, not strange or scary!

https://www.youtube.com/watch?v=WEB7nGvJt7I

She does a very good job explaining why it is important to allow verbal and vocal stimming, and how the real problem with it is when it is annoying for others who are around.  She suggests that we need to change our perspective rather that stop the stimming.

I agree with her.  Completely.  On principle.

Jake’s non-stop talking does not hurt him, nor does it hurt anyone around him.

But there are so many times that we are all going crazy!

I know a few things that will help this situation, and the more I think about it, the more I realize they are powerful and possible.  The first and most important thing is that we need to be less bothered by it.  Truly, my husband and I can text each other if we really need to.  But if I can recognize that it brings Jake joy, calms him and helps him, then I will be more patient, and I will be happy that he is doing well.  If I can remind myself that it is okay, that all is fine and it is his way of coping with stress or creating and expressing joy, I will find peace and joy in that.

The other is creating some boundaries.  I can build on the ‘not available’ idea by creating times when it’s not okay to talk constantly.  I can make a social story about watching tv with dad and how he likes to hear what the tv says.  I can create some practice situations where other people are trying to talk and the noise Jake is creating makes it difficult.

Finally, I have really noticed that Jake loves music.  I hope to write more about that some time soon.  But when there is music on, even softly, he listens, he sings, he dances, and he is calm.  He does not talk nearly as much.  I also love having music on in the house, so I can try to remember to use this when his constant babble becomes overwhelming.  It may be time to just change the sound in the house to music rather than wish for a quiet that will never come.

Yellow, and White, and Brown, Oh My.

Jake told me that he couldn’t eat peanut butter anymore.

He said that it is the wrong colour.

That it gives him nightmares and he can’t sleep at night.

That it is too light of a brown.

And I said, okay then.  I made him another lunch.

Now the question is, am I crazy?

Well, yes.  That is the name of this blog after all. But also, no.

My husband struggles with food of certain colours.  He has, for as long as he can remember.  I have teased him about this, tried to get him to try new things, and accepted it.  He doesn’t like yellow.  Or white sauces.  Seriously.  I am not the only one who has given him a hard time about this.

And now Jake?  Light brown?

I have recently read a novel titled, The Curious Incident of the Dog in the Night-time by Mark Haddon.  It is a great read, I highly recommend it.  The main character is a teenager with autism.  He also has colour issues.  He watches the cars on the way to school in the morning.  If there are red cars, it is a good day.  If there are yellow cars or brown cars, it is a bad day.

Yellow and brown again.

What a strange way to decide if you are having a good day or bad day, I thought.

So I talked to my husband about his colour issues.  It was incredible.  We talked about colours for hours.  I really listened.  My husband has no diagnosis, but imagines that today if he were a child in school, he probably would.  Autism wasn’t the same thing when he was a child.

Back to the colours.

He remembers trying to sleep, closing his eyes, and seeing flashes of
colour.  If there was predominantly yellow and white, he couldn’t
sleep well.  Yellow, in particular, brought out the emotion–he even
created a name for the particular shade that he saw: “danger yellow.”
When he saw these colours, he had trouble relaxing, had trouble
falling asleep, and had nightmares.  He understood, as a young child,
that seeing yellow and white meant a bad night.

This is something!  This is amazing!

This is something I have control over! I can make lunches that are the right colours!  I can do that!  I can appreciate and understand that although I may be crazy, I may think that it’s crazy, it is real and really makes a difference for Jake.

Research online has not helped me much.  I did find this, from an interior design blog, however it does not cite the source of the research.

Researchers have found that autistic children’s rods and cones (components of the eye) have changed due to chemical imbalances or neural deficiencies. Colors appear more vibrant to autistic children. Of the autistic children tested, 85% saw colors with greater intensity than non-autistic children. The color red for example, looks fluorescent and vibrates with intensity.

http://colorspecialist-charlotte.blogspot.ca/2011/04/color-autism-guest-blogger-denise.html

I have looked online to see if there are other autistics describing similar colour aversions.  There isn’t much.  There are many descriptions of people who see words, numbers, or feelings in colour.  The book Born on a Blue Day by Daniel Tammet describes this phenomenon well.  He is an autistic savant who remembers dates and numbers because he can see their colours.  This is called synesthia and is a legitimate neurological phenomenon that is being studied.  I don’t think this is what my husband and Jake are experiencing, but I don’t know.

Wikipedia defines synesthia as “a neurological phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.” http://en.wikipedia.org/wiki/Synesthesia  So, a crossing of neurons, where one sense, like seeing a colour, triggers the experience of another, like pain, or joy.

I have found a few people who describe disliking yellow or white, or tan (a light brown? Huh.)  So my husband and Jake aren’t alone in this.  However, others describe that the colours taste bad, make them nauseous, or are associated with negative things for them.  I have also looked up sleep disorders and tried to find connections to colours.

There is a considerable amount of research that shows that using a colour screen or colour tinted glasses can dramatically help autistic people process the things they see.  Literally, seeing the world through rose-coloured glasses, or blue, green, or orange.  I am going to look into this further for Jake, sometime.

Yes, I have more research to do.  I will be looking for more information about this colour thing for years to come, I am sure.  But right now, I am thrilled that I know enough to go along with it.  I know enough not to tease him, to pressure him, or to force him to eat that peanut butter sandwich.  We are growing, my boy and I.

A birthday party

We went to a birthday party this weekend. It was so fun. Seriously fun. Not because it was at the gymnastics club where kids had too many choices and ran until they were spent. It wasn’t. Not because every kid from the kindergarten class was there competing for the birthday girls’ attention and fighting over the toys. They weren’t there. Not because there were tons of sweets and treats. There weren’t.

It was seriously fun because it was simple. And relaxed. There was a grand total of eight kids there, including Penny who is now 7 months old and all of the siblings. All of the parents stayed and visited and had nowhere else to go. There were no noisy games and all of the kids were happy. They knew each other. They knew where the bathroom was.

I love these people. What was amazing was that I was there with my family, and we are the only ones there with a diagnosed special need, but the hostess kept raving about how happy she was that it was so relaxed and comfortable for her kids.  My Jake was the only autistic child there, but one of the other moms was thankful afterwards that we were all so accommodating of her family’s need to arrive late. Seriously. How blessed am I. Aiden and Jake played with each other, with the other kids, the little girls played with Penny. The kids were all having so much fun that they didn’t eat much dinner. And when the cake came out, it was gluten free, not so that my family could participate, but because the hostess is also wheat free,

How amazing. This is what makes my heart full. Such normal, casual, comfortable friendship and acceptance.

Empathy round 1

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

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

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

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

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

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

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

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

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

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

Does that mean he isn’t empathetic?

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

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

That all sounds a great deal like empathy to me.

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

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

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

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

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

Said another,

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

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

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

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

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

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

I say he’s got plenty of empathy.

Pancakes and dancing

Tonight we were finishing up our chocolate chip pancakes for dinner.  My dear husband put some music on and I cleared up the dishes.  Jake started dancing/ricocheting across the room like a pinball.

He spun and he banged into things.

“I love you.” He sang.

“Who?” Dad asked.

“All of you.  We are the best.”

Yes.  We are the best.  And I love you too.

The World is Too Intense

I have found a few sources that discuss how the sensory disorders that are so often associated with autism are inseparable from the biology in the brain and the diversity of autistics.  Then I found this website and it describes a theory of autism that explains both the sensory disorders, and the diversity, so nicely.  It makes total sense to me, and I find it remarkable.

The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense and that the symptoms are largely because autistics are forced to develop strategies to actively avoid the intensity and pain. Autistics see, hear, feel, think, and remember too much, too deep, and process information too completely. The theory predicts that the autistic child is retreating into a controllable and predictable bubble to protect themselves from the intensity and pain.… It is a unifying theory because it takes into account and explains the many different results and interpretations from a spectrum of studies on autism.

http://wrongplanet.net/interview-henry-and-kamila-markram-about-the-intense-world-theory-for-autism/

What this quotation describes is exactly what I have noticed in Jake.  He reacts when he is overstimulated.  I can see how different people would find different ways to cope, and this would account for all of the different kinds of autism we see.

I read about how many autistic people can’t see the forest for the trees.  They are often so focused on details that they can’t see the big picture.  Often this can be quite literal, as in not being able to cope in a group of people because they are processing each individual person and thing in the room so completely.

Today, Jake couldn’t go to school.  He was just an emotional, overloaded, sobbing mess.  I have no idea what was wrong.  There was no fever, no runny nose, nothing obvious.  I eventually gave him some ibuprofen hoping that if something was hurting him, it would ease.  And ease it did.  The change was dramatic.

One minute he was gripping me and screaming that he wanted to go to the library RIGHT NOW to get a Lego Star Wars book, and the next he was calmly showing Penny his collection of cars.  It was about 20 minutes after the medicine was given.  Something was really bothering him.  I may never know what.  I hope that as he gets older he will be able to tell me so I can help him.  It could be anything-a smell, lights, sounds, a headache?  I can only speculate.  Kids with autism often find the smell of cleaning solutions to be too much to handle.  I have noticed that Jake has torn off his socks his whole life.  I think that the elastic tightness on his feet bothers him.  I ran through what he ate the night before, wondering if there was something different or particularly agitating.  I came up with nothing.

He was reacting to a pain, though, and it was coming out in tears, punches, pinches, and yelling, this morning.  I guess I am becoming more understanding.

I did have to leave the room once, to calm myself and remind myself that this is what was going on.  It isn’t easy to stay in the moment and keep my knowledge in front of my emotions.  I sure wanted to yell at him, give him a time-out, and send his weeping butt to school so I wouldn’t have to deal with it.  I’m glad I didn’t though.

We ended up having a great day.  He stayed home all day.  We played Lego.  We watched TV, we played on the iPod.  I made a lunch I knew he’d like, and sure enough he ate joyfully.  By the time my husband came home from work the house was calm and happy, and I actually went out for coffee with a friend.  I came home to find the three kids all playing peacefully and dinner was started.  I may never know what it was this morning.

Overall, knowing that the world is sometimes just too much to bear is very helpful for me.  It gives perspective and understanding.  From there I can try to find appropriate consequences for the violence and work on being patient with the tears.