“The Man” — A Story About Aspergers & Empathy

Empathy is not a word usually associated with Aspergers. Most of what you read says that people with Aspergers are insensitive to others’ feelings because they cannot empathize. But that’s not always true.

For my previous post about Aspergers and Empathy, read
“Not Enough Empathy? or Too Much Empathy?”

My child’s empathy for others pops up when I least expect, like one fall afternoon when the leaves were changing from gorgeous green to bright yellow and brilliant orange.

We lived only a block from school, so it was unusual that Spider-Man and I would drive the minivan to pick up Trio Man from half-day kindergarten. But today we had a doctor appointment shortly after school, so we drove.

Once we picked up Trio Man, we had a short drive on the highway through spaghetti junction with all its road construction and exited at Xerxes Avenue. At the top of the exit was a 20-something young man with a sign that said, “Absolute Desperation.”

Trio Man asked, “Why does that man have a sign that says, ‘Absolute Desperation’?”

Such a big question to answer for a kindergartner.

“He’s probably homeless, Sweetheart, and doesn’t have a mom who can cook for him. He’s holding the sign because he’s asking for help from the people stopping at the traffic light.”

“We should help him,” Trio Man said.

I reminded Trio Man that we were going to the grocery store and asked if he would like to buy something for the man. “Yes,” he said, so we talked about what we should get the man to eat.

Trio Man picked out cookies, a sandwich, and 2 bottles of water. He put the items in a plastic bag separate from our grocery items and carried it to the van. We had to leave for the doctor’s office and trusted that the man would still be at the exit after our appointment.

But he wasn’t!

Trio Man was very upset. We had to find “the man.”

I was sad that we couldn’t find the man, but I was starting to run my mommy to-do list through my head. We had another meal delivery to make. This one was to a church family who had just had a baby. So I told Trio Man that after we did the errand, we’d look for “the man” or someone else holding a sign.

Well, there was no finding someone else, only “the man”!

Trio Man didn’t understand, of course, that there were many men–and women–who had no homes. So we talked about that. I even explained how his uncle was once homeless.

After we delivered the meal to the family, we went back to the intersection of Crosstown and Xerxes Avenue–still no “man.”

Trio Man was very upset.
Spider-Man, who was about 18 months old, was hungry and wanting out of the van.
It was rush hour now.
I needed to be at home making dinner.

Looking for “the man” was not in the plan.

I considered trying the 35W-Diamond Lake exit because there were often panhandlers there, but it was rush hour and we’d have to go through all the construction mess. I was desperate to find any man holding a sign.

Then an idea popped into my head, so I called my husband:

“Are you on your way home?”
“I’ve been home and left again!”
“While out, have you seen anyone with a sign asking for help?”
“Yes, I just saw a man with a sign that said, ‘Absolute Desperation.'”
“That’s the man we’re looking for! Where did you see him?”
“At Crosstown and Penn Avenue.”

“The Man” had moved down one exit. Why hadn’t I thought of that?

We had to make a big circle to get to Penn Avenue and then we had to use the Wagner’s Garden Center parking lot to turn around, but we got to the man.

I’m sure we annoyed the drivers behind us when we stopped at a green light.

I gave “The Man” the bag that Trio Man had put together for him.

The Man was so appreciative! He took the bag to the side of the road and looked in. By this time, the light was red, so we were still there. When he saw what was inside the bag, he turned back to us with a smile and waved again to say, “thanks!” I waved back. As we pulled away, I said to Trio Man:

“Sweetheart, see how happy you made that man?”

Trio Man was not emotional. He just seemed to be watching, almost like he was watching a TV show.

“Uh huh.”

“Trio Man, I’m proud of you. And you should be proud of yourself.”

“I’m proud of you, too, Mom.”

“Why?”

“Because you called Dad to find out where the man was.”

I cried. All. The. Way. Home.

2 Corinthians 9:12-13a says:
The service you are offering helps God’s people with their needs, but that is not all it does. It is also bringing more and more thanks to God. This service is a proof of your faith, and people will praise God because of it.

Thank you, Lord, for the privilege of being involved in Trio Man’s growing compassion for others. Amen!

And now we keep Manna Bags with us in the car to hand out to the homeless whenever we see them. You can, too! Learn more about how to make Manna Bags!

Shared with Trio Man’s permission.
(This story took place in Minneapolis, Richfield, and Edina, Minnesota.)

Not Enough Empathy? or Too Much Empathy?

At a time when we later realized would be timely, my sister-in-law posted an article on my Facebook wall about Aspergers and empathy. We’ve all heard that people with Aspergers lack empathy, but this article claims that people with Aspergers actually feel others’ emotions too intensely to cope.

“What if what looks like coldness to the outside world is in fact a response to being overwhelmed by emotion—an excess of empathy, not a lack of it?”
“A Radical New Autism Theory” by Maia Szalavitz

My friends commented on the post by saying, “Yes, I see this in myself” and “My son is like that.” Those could’ve been my comments. I do see this in myself. I do see this in my son.

Watching the News is Too Intense

I can’t watch the news any more. I rely on the New York Times headlines that are emailed to me every day and on my husband to keep me updated on current events. Why? Because once I know about something tragic, I just can’t get it out of my mind.

For example, the ISIS beheadings of Christians. I obsess over the fear the victims felt. I imagine that I was one of the victims and wonder if I would die bravely in Christ’s name or if I’d beg for my life. I obsess over how the families feel–anger, intense sorrow. I can put myself in their shoes too easily.

Then I’m in a bad mood and get nothing done all day.

When I told a relative that I don’t watch the news any more, another relative in the conversation said that it’s the same for her.

How I Responded to 9/11/01

I remember that in the afternoon of Tuesday, September 11, 2001, I had a conference call. I was working in Minneapolis at the time, so I wasn’t geographically near the plane crashes, and neither were the people on the call. I put on my business voice and greeted everyone cheerily.

Everyone else on the call was somber.

I’m sure that I came off as callous. By the afternoon, I had already put my feelings about the morning’s events aside so that I could get down to business. I wasn’t uncaring. I just couldn’t let myself “go there” because then I wouldn’t be able to work.

What About Trio Man?

So now that I’ve read the article that my sister-in-law posted on my Facebook wall, I’m rethinking scenarios when Trio Man has appeared callous.

Another Boy Got Hurt

For example, when he was in 2nd grade, I was homeschooling him. We had met up with other homeschoolers at a park, and he was playing basketball (more or less) with three other boys. One of the other boys got hurt.

It wasn’t Trio Man’s fault at all. The boy wasn’t seriously hurt–it wasn’t like we were calling for an ambulance–but he did need his mom’s attention and a first aid kit.

Once the boy’s mom was at his side, Trio Man tried to get one of the other boys to play ball with him again.

It wasn’t appropriate. I remember taking Trio Man aside and coaching him, explaining that when someone gets hurt, we stay by that person’s side until they feel better. I knew at the time that Trio Man just didn’t know how he was supposed to respond, so I taught him (and did so without judgment).

At the time, I figured Trio Man lacked empathy. That it was an Aspergers Thing. Now, after reading the article, I wonder if he set aside his deep feelings of empathy and “moved on” in order to avoid those feelings. It’s hard to say.

“Intense World” Theory

According to this “new” intense world theory (“new” in quotes because Ms. Szalavitz’s article was published in 2009), empathy is thought to have at least two critical parts:

  1. The ability to see the world from another’s perspective, also known as Theory of Mind.
  2. The ability to imagine what the other is feeling and to care about their pain.

Kids on the Autism Spectrum develop the first part, Theory of Mind, later than neurotypical children (NTs). As Ms. Szalavitz points out, “It takes autistic children far longer than others to realize that other people have different experiences and perspectives.”

But once people on the Spectrum are able to empathize with others, they may have a better sense of what others are feeling. That is, the second part of empathy may actually be more intense for people on the Spectrum. Here’s an example from my life.

Interpreting Facial Expressions

Growing up, I didn’t know how to interpret facial expressions, so I paid close attention to the situations around me.

This is what Girl Aspies do. They study social situations.
Boys? not so much.

I was the awkward girl because I didn’t “get” situations. But as an adult, that changed.

For example, after Spider-Man was born, my husband and I volunteered in the church nursery. Part of our responsibility was checking in the babies and toddlers, which meant I got to chat with the parents.

I was friendly with one of those parents because Spider-Man and one of my friend’s boys were born a couple of days apart. She and I weren’t close, but we had had some nice conversations.

One Sunday, she checked her son into the nursery, and I could tell that something was wrong. I asked her quietly if everything was okay, and she said, “Yes.”

I didn’t believe her.

After the service, I looked for her and asked her again. I told her that something seemed to be bothering her and that she didn’t have to tell me what was wrong but that I would be praying for her nonetheless. It wasn’t like we were close friends, so I didn’t expect her to suddenly trust me and tell me everything.

She was taken aback.

Later, my friend told me that there was something amiss in her marriage, and she confided in me. She also told me that she was surprised that I noticed that something was wrong.

No one else had noticed.
Not anyone in her church small group.
Not anyone who knew her better than I did.

I thought it was obvious.

Back to Trio Man

I mentioned at the top of this blog post that my sister-in-law posted the article about the “intense world” theory at a time that we later realized was timely. Why was it timely? Because a couple of weeks later, her dad died–my father-in-law, Trio Man’s grandpa.

When it became clear that my father-in-law might not live through the week, I went back and found the post, and added a comment: “Let’s remember this throughout the week.”

Trio Man’s feelings were intense, but most of the time they were hidden from the outside world.

He didn’t want to be a pallbearer. Spider-Man was okay with being a pallbearer, but it was too intense for Trio Man.

And that’s okay.

After all, we all deal with grief differently. And, clearly, Trio Man felt his emotions very deeply–even if they weren’t always apparent to others.

But I noticed.

Trio Man’s stories are shared with his permission.

Stay tuned for another Trio Man story about empathy–coming to you Saturday evening.

Articles on Aspergers and Empathy

“A Radical New Autism Theory” by Maia Szalavitz posted May 11, 2009

You can read about the more traditional view of Aspergers and empathy at “Neuroscience Sheds Light on Why People with Asperger’s Syndrome Lack Empathy” by Kathy J. Marshack, PH.D., publication date unknown but probably 2014.

Aspergers Meets Middle School

Last night was one of those nights when I was reminded that Trio Man is in that awkward spot between special needs and typical. Or perhaps, more accurately, in that small group of kids who are a little special needs, a little typical, gifted enough to be awkward, and in middle school.

Already isolated by Aspergers. Already isolated by giftedness. And then there’s the middle school scene.

It was one of those nights that I just wanted to hold him all night and protect him for the rest of eternity.

You see, things didn’t go as planned. Well, not as he had planned. And Trio Man plans everything in his head.

It was the Christmas party for the church youth group (which, as he would point out, is not technically a “youth group,” but that’s the most widely known way to explain the kind of group that’s he is in at our large church).

Trio Man thought that they were going to eat and socialize all night. Instead, they socialized for a while and then started playing games. I don’t know what kind of games. It doesn’t really matter. Because in his mind, playing games was not in the plan.

And it was noisy.

And they were not in their usual small groups.

And no one was as excited as he was about the Family Favorite Chocolate Chip Cookies that he brought to the party.

They really are the best chocolate chip cookies, and Trio Man wanted everyone to enjoy them as much as he does. I made a double batch. Only 5 cookies were eaten at the party, and three of them were eaten by him! His feelings were hurt.

He called, and I picked him up early.

His feelings were complicated. “Nothing goes as I plan! Not my birthday party. Not my gaming party. Not tonight. I really want everything to go as I plan.”

“And I really haven’t told anyone this, but the kids are bullies.” Which kids? The kids in youth group.

I don’t know if the kids really are bullies or are just typical middle schoolers trying to figure out “their group.” I have some investigating to do.

But I do understand how he feels. I remember how much peer pressure was in my youth group. It doesn’t seem right that there is jockeying for position and cliques and unkindness in a church gathering, but in reality it is just a normal part of life.

Sometimes we parents have to remember that. As much as I want to protect him, and as much as I want to be “gung-ho” about church, I understand that we Christians are as human as the next person.

But I did tell Trio Man that he doesn’t have to go to youth group. Or, the next time that the youth group plans something that’s different from the weekly meeting, we can ask for more information about what’s planned for the evening so that Trio Man can align his plan with the group leaders’ plan.

And he can always plan to leave early.

from 504 to IEP–Success Today!

Success! I called a 504 meeting and convinced the team to reevaluate Spider-Man (who has ADHD and anxiety)…

…even though he was just evaluated last spring!

Impossible, you say? Can’t reevaluate within a year, you say?

IDEA 2004 Regulations, 34 CFR Part 300, specifically 300.303 “Reevaluations” under b says:

“A reevaluation conducted under paragraph a of this section may occur not more than once a year, unless the parent and the public agency (school/school district) agree otherwise.”

We agreed!

“We don’t do that here.”

“Wrong answer!” That’s what our school district’s Director of Special Ed says.

Have you ever heard “We don’t do that here” at an IEP meeting? So frustrating! Don’t take “no” for an answer.

A parent at the Special Ed Advisory Committee (SEAC) meeting suggested a great response. This should work at any school in any district. Respond by saying:

“Okay, but please provide in writing the policy or procedure that supports you in saying that.”

Do you have a SEAC in your school district?

Is it Aspergers or Is it Giftedness?

How Do You Tell the Difference and Does It Even Matter?

In an IEP meeting, the Director of Special Ed (who was also the Principal at our small charter school) said that Trio Man’s issues have more to do with his giftedness than his Aspergers.

Say what!?!

I knew Trio Man was gifted. That’s not what I was reacting to. What I was reacting to was the thought that his giftedness was affecting his behavior.

So I started researching giftedness.

Giftedness Behaviors

I found what you would expect.

  • Gifted kids often get bored in class.
  • Gifted kids talk like adults but have the maturity level of their age peers.
  • Gifted kids don’t have many friends because they talk like adults rather than kids.

I learned a few things that are more obvious but that I hadn’t given much thought:

  • The over-achiever may end up being the teacher’s assistant because she is always the first one done with her work.
  • Other gifted kids (usually boys) will choose not to do their work because it’s “so boring” and instead think about things that are interesting to them–which means they look like they’re daydreaming.
  • Some gifted kids might even have behavior problems because they will act out rather than do their “boring” work.

But the Director of Special Ed couldn’t have been talking about that. Certainly there was more to her statement.

Then I found a book titled Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, OCD, Asperger’s, Depression, and Other Disorders.

Huh?

It never occurred to me that a neurotypical kid–that is, not Autistic, not ADHD–would have behaviors similar to my boy with Aspergers.

(Now that I’ve read what I wrote, I realize that giftedness would not be classified as neurotypical, but that’s another blog post…)

Aspergers AND Giftedness

So I skipped right to the chapter about Aspergers and giftedness.

Here’s what stopped me in my tracks:

“It can be difficult to differentiate between some gifted children and children with Asperger’s…. In fact, there may be a gradation rather than Asperger’s… being a discrete category” (p. 100).

They’re suggesting that Aspergers and Giftedness are on a spectrum!

Wow! How ironic is that?

How are Aspergers and Gifted behaviors similar? Take a look at the graphic.

Comparing Aspergers and Giftedness

However, “if the child can convey to others some of the joy that he finds in his hobby and spontaneously seeks to share it with others, then there is a decreased likelihood that an Asperger’s Disorder diagnosis is appropriate” (p. 101).

JUST Aspergers

But what about Aspergers and not gifted? Read the rest of the graphic.

“May,” “less,” “more,” “almost,” “tend”… All these words indicate that someone with Aspergers is closer to these descriptions and someone with Giftedness is further away from these descriptions–But it’s not black-and-white. On a spectrum, remember?

Misdiagnosed? OR Dual Diagnosed?

Is Trio Man misdiagnosed or dual diagnosed? On his good days, I’d say he’s misdiagnosed. On his bad days, I’d say he’s dual diagnosed.

How about your son or daughter?

Does It Even Matter?

For our situation, no. It doesn’t matter.

Trio Man’s IEP says that he has Autism. Because of his Autism, he gets special educational services that he needs, particularly during the first 2 months of the school year because he has a hard time transitioning into the new year. By the end of the year, you would think that he is misdiagnosed.

But, frankly, Trio Man wouldn’t be doing as well as he’s doing without the support of the special ed teachers and the accommodations by the regular ed teachers.

The difference is that now I know that some of his behaviors are not just from his Aspergers but also from his Giftedness.

But, no matter what…

Trio Man is amazingly and wonderfully made.

ADHD? Aspergers? or Both?

“Everyone has a kid with ADHD!” That’s what my neighbor said to me when I told her that my younger boy was recently diagnosed with ADHD. And she’s probably right.

So many boys get diagnosed with ADHD.

What Is ADHD?

Simply put, ADHD is either the inability to focus or the inability to sit still or both.

Is ADHD for Real?

Some say ADHD doesn’t exist.

The naysayers point out that schools require boys to sit too much and therefore ADHD is in the minds of the (female) teachers. I can see their point to a certain extent. Schools have shifted from being boy-focused to being girl-focused. However, I’ve compared my younger boys’ behavior to his classmates, and I can see the difference.

As an example argument that ADHD is over-diagnosed, read “Why so many kids can’t sit still in school today” published by the Washington Post.

Is It ADHD or Giftedness?

Now, THAT’S a great question! If you’ve got a kid whose advanced thinking and vocabulary make you pause, you may have a child with giftedness–no matter what his grades show. Not all gifted kids score A’s.

However, discussing giftedness is a post all its own, so stay tuned!

Is ADHD on the Autism Spectrum?

Some say ADHD belongs on the Autism Spectrum–at the very top end, higher on the Spectrum than Aspergers. (One such author is Dr. Kenneth Bock, who said as much in his book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies.)

This one makes me pause. My boys are 4 years apart, and it took me a couple of years to see that the younger one does NOT have Aspergers. (Want to learn more about Aspergers? Read my first blog post.)

Why? Because to me, the diagnostic criteria for ADHD looks a whole lot like symptoms of Aspergers.

ADHD’s Inattention

Let’s take my older boy, who has Aspergers, (we call him Trio Man) as an example. Under the criterion of attention deficit (which the DSM 5 calls “inattention”), Trio Man shows all 9 symptoms (only 6 are required for diagnosis). Of those 9, I’d say that three are true if the tasks are not his preferred tasks. That is to say that he can focus on what he wants to do–his “restricted, repetitive interests” (an Autism criterion)–but he cannot focus on non-preferred tasks. Just ask his teachers.

The 9 symptoms include missing details, not able to pay attention, doesn’t seem to listen when spoken to, doesn’t follow through on instructions or schoolwork or chores, finds organizing tasks difficult, avoids anything that requires mental effort, loses things, easily distracted by what’s going on around him, forgetful. That describes both of my boys!

Kids with Aspergers can seem like they don’t listen because they are so entrenched in what they are doing and they cannot transition to listening.

Kids with Aspergers don’t follow through on instructions because they cannot handle orally stated multi-step procedures, which is often seen in Autism.

Kids with Aspergers often appear disorganized (unless they are also OCD).

Kids with Aspergers often avoid things that require mental effort, assuming that the “thing” is not his/her preferred interest. For example, Trio Man loves chemistry and will tell me all sorts of facts and trivia about the elements in the Periodic Table. However, he will avoid botany.

ADHD’s Hyperactivity and Impulsivity

Under hyperactivity, my boy with Aspergers shows 5 of the 9 symptoms (6 are required). The 9 symptoms include fidgeting, leaving his seat, runs or climbs when not appropriate, unable to be quiet during play, seems to be “driven by motor,” talks excessively, blurts out answers, can’t wait his turn, interrupts others all the time. Oh, yeah, that completely describes my younger boy (we call him Spider-Man).

Kids with Aspergers talk excessively about their preferred interest. Actually, they talk ad nauseam–until you are nauseous from listening to all those details!

Kids with Aspergers blurt out answers because they are not aware of the social conventions of waiting their turn.

Kids with Aspergers interrupt others, usually by changing the topic to their preferred interest, because they are not aware of the social conventions.

ADHD? Aspergers? or Both?

Trio Man, my boy with Aspergers, probably could be

diagnosed with ADHD (the psychologist would probably say “predominantly inattentive”)
or
co-diagnosed with ADHD and Aspergers
or
diagnosed with just Aspergers (or Autism Level 1 under the DSM 5–see previous blog).

In my experience talking with other moms, I have learned that many kids with Aspergers are first misdiagnosed with ADHD. Often, when those kids are correctly diagnosed with Aspergers, they maintain a co-diagnosis with ADHD.

Does it really matter?

Only in that the child gets the services (and meds, if you choose to medicate) that he needs covered by insurance and the services that he needs in school.

Aspergers? But the DSM 5 says Autism Level 1

Yes, I know that Aspergers doesn’t exist as a diagnosis in the USA any more, but I like the term “Aspergers” so much more than “Autism Level 1.”

What the DSM 5 Is

What am I talking about? If you’re already entrenched in the world of Autism, then you know that the American Psychiatric Association published a new version of their diagnostic manual about 1-1/2 years ago.

With the new version (edition 5), Autism Level 1 has replaced Aspergers as a diagnosis. That means that in the USA, people will not be newly diagnosed with Aspergers.

If you’ve never heard of this manual before, you can look it up on Amazon. It’s the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition, or DSM-5, published by the American Psychiatric Association. It’s what doctors use to categorize mental disorders in order to prescribe medications and therapies.

The DSM 5 is a classification system that explains what is and what isn’t a particular disorder. In it, you’ll find about 700 pages of diagnostic criteria that include things like Neurodevelopmental Disorders (of which Autism and ADHD are categorized), Schizophrenia, Bipolar, Depression, Anxiety, and more.

The previous version of the manual, the DSM 4, included Aspergers as a diagnosis that’s separate from Autism. However, we as a society have understood for years that Autism and Aspergers are on the same spectrum of behaviors, but the severity of behaviors are different.

Schools, for example, when they do their special education evaluation, don’t use the term “Aspergers.” Instead, they use “Autism.” When my son (Trio Man) was first evaluated by the school district, one of the specialists said, “Everyone’s on the Spectrum.”

How Aspergers Compares to Autism

Well, that’s all fine and dandy, but for me, “Aspergers” is a better descriptor than “Autism.”

Because Aspergers looks different from Autism.

An Aspergers kid looks like a typical kid.
An Autism kid does not look engaged.
An Aspergers kid wants to hang out with other kids (but doesn’t know how to).
An Autism kid is indifferent to other kids.
An Aspergers kid says things that are impolite.
An Autism kid may not talk at all.

The differences between Aspergers and Autism became clear to me when I led groups of Aspergers and Autism kids through Vacation Bible School. The Aspergers kids could be described as quirky kids. The kids with Autism were more obviously special needs.

What Aspergers Looks Like

Other parents have said to me:

“He doesn’t look like he has Autism.”
“I couldn’t tell that he has Autism.”
“He has Autism?”

I could respond by saying, “Thanks! but that’s probably because he has Level 1.” I would probably get the response, “Level what?”

Kids with Aspergers or Autism Level 1 are like typical kids (neurotypical–or NT) who are “a little off.”

They look like typical kids, but

      they don’t make eye contact or

they say something awkward or

they seem rather uncoordinated.

An Aspergers kid often talks like an adult ad nauseam about their favorite topic (that is, until you’re nauseous!)
They have excellent memories.
They are very concerned about fairness and justice.
They have attention problems (unless the topic is their special interest).
They don’t think ahead and therefore don’t adapt well to change.
They may be sensitive to sounds or touch.
They have uneven development.
And like all kids with Autism, they get absorbed in their special interest, whatever that may be.

Yep, that’s my boy!