Mysterious Things People With Autism Do – and Possible Reasons Why

people-with-autism-do-why-guiding-exceptional-parents-sarah-waylandThis post was originally published on Parenting ADHD & Autism on October 12th, 2016.

Kids with autism have a unique way of thinking about the world that can be both fascinating and baffling. Often their intentions are misunderstood because they behave in ways that are unexpected.

This chart can help demystify some of those behaviors.  

Teacher’s or Peer’s Impression Possible Reasons for Behavior
Uncaring and/or rude
  • Has difficulty understanding social cues (especially nonverbal cues like posture, gesture, facial expressions, and tone of voice).
  • Doesn’t pick up on social expectations or norms of classroom behavior.
  • Isn’t aware that his/her classroom behavior disturbs classmates (e.g. noises, movements, sprawl of books).
  • Doesn’t notice (and thus doesn’t respond to) social invitations.
  • Has difficulty understanding that other people have different experiences and opinions.
  • Doesn’t realize that everyone doesn’t know what he or she knows.
  • Finds eye contact distracting – cannot listen while maintaining eye contact.
  • May be impulsive (as part of co-occurring ADHD diagnosis).
  • Isn’t always aware of how others are feeling, until their response becomes unmistakable.
  • Has sensory challenges (over- and/or under-sensitivity) that make it hard to attend to other people.
  • Wants to be part of the group, doesn’t understand how to participate appropriately, so does it in unexpected ways.
Awkward in social conversations
  • Has difficulty initiating social interactions.
  • Doesn’t pick up on norms of social interaction.
  • Isn’t always aware of how others are feeling, until their response becomes unmistakable.
  • Talks too much on topic of interest because of inability to read the signs of listener’s boredom or irritation.
  • Misunderstands what other person said because of subtle language issues. Examples include:
    • Very literal interpretations, often concrete in nature;
    • Difficulty processing complex sentences;
    • Difficulties understanding pronouns;
    • Difficulties with words that have more than one meaning;
    • Surprising vocabulary omissions;
    • Trouble with verb tenses, plural markers, etc.;
    • Trouble with words indicating sequence (first, next, then, etc.)
    • etc.
  • Sticks to familiar topics because subtle word finding issues make unfamiliar topics more challenging.
  • Conversations are at a faster pace than the student can process. Especially true when more than one other person is involved. Students respond either by withdrawing, or by trying to control the interaction.
  • Sticks to familiar topics when slow processing speed makes it hard to shift quickly in response to others’ comments.
  • Has difficulty quickly understanding and absorbing what someone said.
  • Unsure how to repair communication breakdowns.
Off-topic classroom comments
  • Has difficulty determining the main topic of discussion.
  • Is deeply curious about details that may not matter to others, while missing the big picture.
  • Wants to be part of the group, but doesn’t realize it is important to stay on topic.
Introverted/anti-social
  • People with autism are introverted, extroverted, and everything in between. Personality type varies just as much as it does in the non-autistic population.
  • Is discouraged and disengaged as a result of repeated social failures. This looks like introversion.
  • Has difficulty quickly understanding what someone said. This can look like a lack of desire to interact.
Disorganized, late, lazy, lacks follow-through
  • Has poor time awareness.
  • Has difficulty prioritizing.
  • Has difficulty breaking big tasks down into smaller, more manageable chunks.
  • Poor fine motor skills make written work look sloppy.
  • Has difficulty holding spoken directions in mind and forgets what to do.
Doesn’t feel emotions
  • Feels emotions as strongly (and sometimes more strongly) than non-autistic people, but outward expression appears flat. An autistic person may be quite unaware of how his or her own body language is perceived.
  • Has a default “logical” response to situations that others might find overwhelming.
  • Doesn’t understand the emotional reasons for a behavior.
  • Doesn’t understand why people would feel as they do.
  • Has sensory challenges that lead to an under-reaction to environmental sensations (sounds, lights, smells, etc.).
Over-reacts emotionally
  • Has an emotional response to a trigger that a non-autistic person may not understand or notice
    • Misunderstands confusing or complicated social situations – can sometimes lead to perception of being bullied or teased
    • Has sensory challenges that lead to an over-reaction to sensory inputs (sounds, lights, etc.)
  • Isn’t always aware of his or her own feelings, until they become overwhelming.
  • Has difficulty letting go of a thought.
Stubborn
  • Has difficulty coming up with a new strategy when needed.
  • Has difficulty modifying or delaying a task when needed.
  • Has difficulty letting go of a thought.
  • Has difficulty transitioning from one activity or expectation to another.
  • Has difficulty understanding that other people see things differently.
  • Has subtle language comprehension issues that lead to misunderstanding.
  • Cannot do what you are asking, but doesn’t know how to tell you that.
Lacks common sense 
  • Has difficulty making connections between events that others see as related.
  • Doesn’t recognize the similarities between situations, so doesn’t learn from past mistakes.
Behaves oddly
  • Needs to move in certain ways to maintain self-regulation (e.g., fidgeting, or pacing, tics, among others)
  • Isn’t aware of where his or her body is in space, so bumps into things and people, or stands too close or too far away.
Excels at math, engineering & computers (stereotype)
  • People on the autism spectrum can be brilliant, cognitively challenged, and anything in between. Intelligence varies just as much as it does in the non-autistic population.
  • Preferences vary just as much as in the non-autistic population.
  • People with autism are usually passionate about their interests and driven to explore those interests deeply.
Not interested in sports (stereotype)
  • Interest in sports varies as much as it does in the non-autistic population.
  • Plenty of people on the autism spectrum are excellent at sports, but some may have challenges with motor coordination.
  • Team sports that require quickly coordinating with others can be very difficult.

Please note that no one student will struggle with all the challenges listed above, but all those with autism will struggle with some of these issues. 

Special thanks to Sue Keisler for her input, encouragement, and insight. She was instrumental in helping me create this, and made important contributions. Monica Adler Werner also made meaningful improvements. 

Children with autism often behave in unexpected ways that are fascinating or baffling. Read

We All Have Our Parenting Kryptonite

We All Have Our Parenting KryptoniteThis post was originally published on Parenting ADHD & Autism on August 23rd, 2016.

Superheros

Parents are my superheroes. Who else but a superhero would wake up multiple times every night to help a crying child calm down? Who else would carry a baby everywhere, even when it means that they cannot sleep, sit, or eat? Who else would drop everything and dash to the aid of their child when he is in danger? Who else would endure the slings and arrows of adolescence and still work to guide their child to a better life? Who else would toil behind the scenes to make sure their children have what they need to survive (and even succeed), requiring no acknowledgement?

But sometimes we don’t behave like Superman. Sometimes we are more like the conscientious and kind Bruce Banner, morphing into the Incredible (Savage) Hulk at the slightest provocation. And when we look back at our anger, we are ashamed. We are painfully aware that we are not superheroes. We don’t want to lose control… but we do. We feel powerless and weak.

We are human.

Humans

Perhaps we remember what it’s like to be a child who is scared of their parents. Or, perhaps we can’t remember our parents ever behaving the way we sometimes behave.  Either way, it doesn’t feel good. No one wants to be remembered as a parent who inflicted emotional harm.

No one talks at the office water-cooler about how their kid had a screaming fit when they were forced to go to the pool against their will! Ross Greene says something along the lines of, “Show me a child who is digging their heels in, and I’ll show you an adult who is being equally inflexible.”

I am writing this post because as parents, we aren’t allowed to talk about this. We need to talk about this.

Facing Your Kryptonite

It’s important to know your kryptonite (weakness). Mine is when I think about the future based on what I’m seeing now. “How is he going to live independently if he doesn’t remember to eat without being reminded?”

—Here are some thoughts that Dr. Dan Shapiro, M.D. (www.parentchildjourney.com) has identified in parents. (I’ve noted cognitive distortions that might be associated with each thought in parentheses.)

  • —If I give up a little bit of control, disaster is inevitable. (Magnifying and Fortune Telling)
  • —My child’s differences mean s/he cannot have a good life. (Fortune Telling and All-Or-None Thinking)
  • —A few steps backwards mean irreversible free-fall. (Catastrophizing)
  • —S/he will never be an independent adult. (Fortune Telling)
  • —If I disagree with my spouse, our children will be totally messed up and our marriage will be a disaster. (Magnifying and Fortune Telling)
  • —If my friends do not understand, I will be alone. (Overgeneralization and Jumping to Conclusions)
  • —I don’t deserve compassion. I should do better. (Should Statements)
  • —It’s all my fault. My genes. My parenting. (Self-Blaming)
  • —My child misbehaves just to get me angry. (Mind Reading and Jumping to Conclusions)

Or maybe your kryptonite is staying calm when your child is losing it.

Do any of these sound familiar to you? Could one (or more) of these be your parenting kryptonite?

The Parent You Want to Be

When you start thinking like this, you may start demanding more of your child than they are capable of. Or you may retreat into a desperate place. Thinking like this can destroy your ability to be the parent you want to be.

What do you do when you can’t stay calm? You have many choices. You can try to think the rational thought (“I cannot predict what will be true in a few years.”). You can take a deep breath and imagine you are rock in a river with turbulent waters rushing around you. You can walk away (give yourself a time-out).

Thinking about how you can deal with your kryptonite moments before they happen can help you in the moment.

It’s important to know your kryptonite. Learn to recognize when it’s sapping your superpowers. Acknowledge its influence, and learn to control your reactions. Don’t expect perfection; no one (even Superman) is perfect.

We are all works in progress.

What’s your kryptonite? Share in a comment!

What parenting triggers cause you anger? All parents have our kryptonite. When we recognize the triggers, we can learn to manage them so we don't inadvertently hurt our children.

Peeling the Onion

peeling-the-onion-parent-coaching-sarah-waylandThis post was originally published on Parenting ADHD & Autism on July 25th, 2016.

Something was horribly wrong.

The boy could read, but when he tried to talk to his parents, all he could do was quote lines from his favorite movie, Finding Nemo. When his family got together with friends who had kids the same age, he would hang out on the periphery — watching, but unable to join in. He communicated by using the magnetic letters on their refrigerator to tell his parents what he was thinking. He covered his ears during emotionally intense scenes in movies and TV shows.

His parents took him to the pediatrician. He tested the boy’s hearing, told his parents it was fine, and that their child was just a late talker. So they waited. They kept asking their friends what they were doing wrong. Their friends were focused on the fact that the boy could read. At 2 ½! What a smart boy he clearly was! Clearly his parents were just being overly competitive.

Finally when he was 4, his preschool teacher told his parents that she thought he needed to be evaluated by a neuropsychologist. When she told them she was shaking because she was so frightened of how they might react. They were grateful to her for being so brave — they had long suspected something was wrong, but no one would listen. The neuropsych evaluation was the beginning of a long series of diagnoses, each of which have helped the boy’s parents to better understand and help their creative and hard-working child.

The Path

Yikes!

The scary thing? All those diagnoses were accurate. But correctly diagnosing each one was not possible without addressing the issues inherent in the previous diagnosis. Until you address the most obvious issues, you can’t even see the issues the more obvious ones are masking. I call this “peeling the onion.” To help you understand, I’m going to peel the boy’s diagnostic onion.

Peeling the Onion

  • Expressive-Receptive Language Delay: The boy wasn’t talking when his same-aged peers were speaking in sentences. That was clearly a big problem for him. Expressive-receptive language disorders can occur in isolation. Kids who cannot speak are often frustrated which leads them to act out or withdraw. And when a kid cannot understand what he is supposed to do? He can look very inattentive. Think about the typical preschool classroom. It’s not designed for kids who have trouble with spoken language – the teacher is constantly telling the kids what to do because most of them cannot read!
  • ADHD-Inattentive Type: The boy had been going to twice-weekly speech language therapy sessions for a year, but something was still wrong. He noticed things that no one else noticed, like the noise of the ventilation system. And he still didn’t think that paying attention to speech was more important than paying attention to those other noises. An evaluation by a developmental / behavioral pediatrician revealed that he had ADHD. No wonder he didn’t learn to talk when his peers did – he had no idea he needed to pay attention to speech! But notice that the diagnosis was not possible until he was able to speak, because a child who can’t understand what you are saying, and can’t tell you what he is thinking, can look quite inattentive.
  • Developmental Coordination Disorder: Some kids with language delays have trouble speaking because of the fine motor skills required to talk. If you think about it, the fact that so many of us learn to speak at all is a miracle. You have to control your breathing so the air comes through your vocal chords at just the right rate so that you can control the volume of your voice. You have to tense your vocal chords to change the pitch of what you are saying. You also need to stop your vocal chords from vibrating for voiceless sounds (e.g., the sound of the voiced v vs. the voiceless f in save vs. safe). You have to coordinate the movement of your tongue and lips to shape your mouth to form the sounds of speech. And all this must be done very quickly. If you have trouble with motor coordination, speaking is going to be tough! Not to mention playing with the other kids on the playground.
  • Social Pragmatic Disorder: Kids who have trouble speaking, and who have trouble paying attention also have trouble making and keeping friends. And boys who are uncoordinated have trouble playing with other boys on the playground. So the fact that the boy was struggling to make friends made sense. But he still struggled to respond appropriately to others, even after he was able to speak and understand, to attend to others, and to run and play. Clearly there was something deeper going on.
  • Asperger’s Syndrome: As he got older, his parents noticed that other kids had a much wider range of interests than their son did. He found it difficult to talk about anything other than computers or politics. This persistent pattern of fixed and restricted interests, in combination with the difficulties with social pragmatics, led to the Asperger’s diagnosis.
  • Generalized Anxiety Disorder: I hate to say it, but who wouldn’t be anxious if they were dealing with all those challenges? It’s a lot. The anxiety wasn’t clear until the boy was 13 because he was one of those kids with a relatively flat affect. His parents misinterpreted that as calm. In fact, he was avoiding social interactions because he was an anxious mess. Treatment with an SSRI changed everything.

When a child is struggling, parents want a definitive diagnosis. But that is often not possible. More kids are like the boy described above. It’s impossible to diagnose every challenge until some of the more obvious challenges are addressed. Thus, the onion. Address the most obvious issues first. Once the obvious layers have been peeled away, the next layers will be revealed. The process continues for as long as you want to keep peeling.

Sometimes parents blame themselves for not noticing an issue earlier. The boy’s parents couldn’t believe they missed his anxiety for so many years. At first they felt awful about it. But it helped to think of the process as one of peeling an onion, addressing the most obvious issues before you can see the inner, less obvious layers.

It’s my hope that you will remember this metaphor as you work to help your children as they grow and reveal their inner layers. Don’t blame yourself for not seeing things earlier. We all do the best we can with the knowledge we have at the moment.

Accept and Believe in Your Child

Mother and daughter having fun in park in autumn
This post was originally published on Parenting ADHD & Autism on July 5th, 2016. 

It’s critical to not be critical.

I’ve been listening to the podcast Invisibilia, and this week’s episode is on The Problem With the Solution. It’s about a woman’s search for effective supports for those with mental illness. She finds herself in the town of Geel, Belgium where families agree to host people who have significant mental health challenges. The families are not told what their boarders’ diagnoses are, and they act as hosts for an average of 28.5 years. The host families in Geel do not feel a need to know the diagnosis, because they prefer to understand their new tenants as individuals, without preconceived notions.

Later in the show, Lulu Miller interviews Jill Hooley, a researcher in the psychology department at Harvard University, who studies the factors that lead to psychiatric relapse in patients with conditions like schizophrenia and depression. Dr. Hooley described the work of a British sociologist, George Brown, who found that patients who were suffering from chronic schizophrenia did a lot better when they didn’t return to live with their families after being released from the hospital. Furthermore, Dr. Brown discovered that if the patient did return to live with his family, the more critical, hostile, and emotionally over-involved the family members were, the more likely the patient was to relapse.

We all know what critical looks and sounds like.

  • “How come you never pick up after yourself?”
  • “Stop picking!”
  • “You need to work on having more friends.”

Hostility is defined as a state of ill will and bad feeling and family members are probably also familiar with how that sounds.

  • “You clearly don’t care about the rest of us.”
  • “I hate you when you do that.”
  • “You have ruined my life.”

We intuitively know that statements like these hurt.

Be cautious of your message.

But it turns out that emotional over-involvement can be just as damaging. Emotional over-involvement is when family members treat their children as if they will not be able to live a productive and constructive life unless they change. There’s a constant push to “make it better”. Sometimes parents will blame themselves for their child’s disability and openly pity the child.

  • “It breaks my heart to see him suffering.”
  • “I’d do anything for her if it would help.”
  • “There’s nothing I wouldn’t do for my child.”
  • “I know he hates going to therapy, but I want him to have the skills he needs.”

Why is this harmful? Our children hear the message that they are not good enough, that we would love them better if they were different from who they really are. That really hurts.

The Invisibilia episode ends with Lulu Miller talking to her own family about her sister’s trichotillomania (compulsive hair pulling). A particularly poignant moment comes when Lulu tells her parents that her sister had to leave home because she felt that her family wanted her to be someone that she was not. Her father recounts a scene when Lulu’s sister was 2 or 3. She was having a major meltdown at three o’clock in the morning, “just screaming and yelling in her bed. And I went in there, and I got angry at her…. I said stop it, stop it. And I remember in her tears, as I was getting angrier… she kept saying, ‘I can’t help it. I can’t help it.’ And I didn’t hear that. It’s something I will always regret — my feeling anger instead of empathy.”

Let your child’s truth be your guide.

In her book, The Insider’s Guide to ADHD, Penny outlines 12 ADHD Truths for effective parenting of kids with ADHD that she learned from surveying and interviewing 95 adults with ADHD. One of those strategies is “Discover, listen to, and accept your child’s unique truth.”

So, how do you do this? There are four strategies that can make a big difference.

  1. Time-In (sometimes called Special Time).
    • Time In is a specific time during each day when your child gets a chance to feel appreciated and understood for who they are. It gives children one-on-one positive attention on a daily basis just for being themselves. It’s one of the most powerful techniques I know for restoring the guiding relationship.
    • Learn how to do it by reading this article I wrote for the site ExpertBeacon.
  2. Use more declarative language (fewer questions, fewer commands).
    • Declarative language is when you state out loud what you are thinking in the form of a comment. Examples include sharing an opinion (I love spaghetti!); making a prediction (I think we are going to the movies tomorrow.); announcing or celebrating (We had a great time today!); observing (I notice that your friend wants a turn.); reflecting on past experience (Last time this stopped working we checked the batteries.); or problem solving (We need tape to fix it.). It does not require a response. Rather, it invites experience-sharing, and provides an ideal social framework for later conversational interactions. I aim for four declarative statements for every question or command that I give to my kids. And I force myself to make four positive declarative statements before I’m allowed to issue the question or command. This sounds simple, but it is incredibly difficult. It also makes a big difference!
    • Learn more about declarative language by reading this article by Linda Murphy posted on the Relationship Development Intervention website. (It’s where I got the examples listed above!)
  3. Monitor and control your body language.
    • Kids with ADHD and autism are keenly sensitive to your body language, so you really need to watch it. Use body language that is open, friendly, and respectful of your child. An open and welcoming posture, friendly (not forced) facial gazing, giving your full attention, with a calm and pleasant expression on your face. No rolling your eyes, looking away, refusing to shift your focus to your child, exaggerated sighing, or scowling. You want your child to get the strong message that you want nothing more than to be with them.
    • Read this article by Julie-Ann Amos on the Body Language Expert site to understand why this is so important.
  4. Presume competence, but provide appropriate support.
    • Kathie Snow says in her article Presume Competence, “Low expectations are the norm [for people with disabilities]. Hopes and dreams are stripped away by physicians, educators, services providers, and even parents…. If a person isn’t considered ready for [fill-in-the-blank], it’s thought he could be harmed. But think back to when you left your family’s home: were you ready? Were you competent to go out on your own? You most likely believed you were, but what about your parents? …[You] learned from your mistakes, found the help you needed from others, picked yourself up, and made it – one way or another! ….Why can’t people with disabilities have those same opportunities?”
    • Sometimes we ask more of our kids than they can handle. That’s okay – be sensitive to when that is happening, and push your kids a bit, but not so much that they are overwhelmed. The goal is to believe that they can do it, and to keep pushing them to be the best version of themselves that they can be.

Sometimes when I tell parents to “get off the negative and focus on the positive,” they ask how their child will learn to function effectively in society. The answer is that kids do well when they can. Give them the tools. And keep in mind that the most powerful motivator in the world is a caregiver’s unconditional love.

The language we use with our children has a tremendous impact, whether it's emotionally charged, commanding, or body language. Let your child's truth be your guide!

Filling Your Child’s Bucket

Filling Your Child's Bucket

This post was originally published on Parenting ADHD & Autism on May 23rd, 2016. 

The Conversation

PARENT: “My child is awful by the time he gets home! He plays video games and refuses to do anything else, screams at me, or abuses his sister until she cries.”

TEACHER: “He is an absolute angel at school! He does his work and is very well-behaved. I have no idea why he is like that at home.”

The Thoughts Behind the Conversation

PARENT: “What am I doing wrong?” OR “What are you doing to my child?” OR “My child must hate me.”

TEACHER: “If you would just do at home what I am doing at school, everything would be fine.” OR “I have no idea what this parent is talking about. Is this made up?”

The most important thoughts, though, are the child’s thoughts.

CHILD (at school): “I am going to do my best to be a good kid today so the teacher and the other kids will like me.”

CHILD (at home, after school): “That was so hard! I can’t do it any more — I need a break!”

When your child is the one who won’t stop playing video games, or who screams at his sister, or treats you like a punching bag, it can be hard to remember that he may just have nothing left.

It takes a lot of work to hold it together in an environment that is not suited to your needs.

  • Sitting still when you want (need!) to move is work.
  • Listening to a teacher when you have trouble understanding what she is saying is work.
  • Understanding what the other kids expect you to do when you have trouble reading the unspoken social cues is work.
  • Writing when you don’t have the fine motor skills to make it look nice is work.

If you find it easy to sit still, and you are great at understanding what others are communicating (both the spoken and unspoken messages), and you love any task that allows you to show off your amazing ability to draw or write, doing these things is not work.

Your resources are like water in a bucket. If you wake up refreshed, eat a good breakfast, and are in a good mood, you start the day with a full bucket. You can do anything! Everything you do that is hard for you drains some of the water from your bucket. Sitting still — if you are a kid who needs to move — drains some water from the bucket. Listening to the teacher and trying to understand what she wants you to do, when you have trouble understanding her, also drains water from your bucket. Figuring out why the other kids are reacting the way they are, when you can’t read their body language, drains more of your resources. And if you struggle with fine motor skills, writing and drawing don’t restore your reserves; those activities are draining.

Filling Your Child's Bucket

If you are doing things that drain your bucket, you need to replenish the supply.

  • If you need to move, recess and exercise can fill your bucket.
  • If you love to read, quiet time with a book can fill your bucket.
  • If you enjoy video games, playing can refill your bucket.
  • If you like being alone and quiet, you may need to retreat to a safe place to calm your jangled nerves and refill your bucket.

What drains one child’s bucket may replenish the reserves of another. Carefully observe your child to see what she does for fun. Then make sure to build time in her schedule for her to do the things that will refill her bucket.

And if your kid’s bucket is drained? Don’t expect him to do things that are hard for him. That might mean canceling plans to hang out with a friend, or not going to a soccer game. Or, it might mean that homework isn’t going to get done tonight.

And that’s okay.

It’s more important that your child view himself as competent and able to navigate his challenges. It’s the job of the adults to make sure he has the resources to do that.

(photo source)

Frames of Reference in Autism

Recently I’ve been listening to Invisibilia, a podcast “about about the unseen forces that control human behavior – our ideas, beliefs, assumptions, and thoughts.” This week’s episode is on Frames of Reference. The first segment is about Kim, a doctor with Asperger’s Syndrome (or “high-functioning” autism). Kim participated in a study designed to determine whether stimulating specific regions of her brain with strong magnetic impulses (transcranial magnetic stimulation or TMS) would change her ability to understand some of the subtleties of language – sarcasm and emotional content, in particular.

TMS did change her abilities, but only for an hour or so. And in that hour, Kim was given a window into an entire world that she had known nothing about prior to participating in the study. In one part of the story, Kim described an experiment in which she watched a video clip before they administered the TMS, and again after the TMS. She describes the video from her perspective each time – first as a person with autism hearing the words and being confused, and then immediately after the TMS when she could understand that the intention of the speaker directly contradicted her words. “And now I saw it: the body expression, the facial expression, and the tone of voice in that interaction. [I] completely missed the meaning of the whole interaction until after the TMS. And then I saw the whole thing clearly.”

I think that this may be the first time I have truly (TRULY) understood how difficult it is for people with autism to understand the social-emotional world. And how utterly effortless it is for others.

ReneeMagritteHumanCondition

René Magritte – The Human Condition – 1933

At the end of the segment, the hosts (Alix Spiegel and Hanna Rosin) discuss whether they would want to get the treatment if they had Asperger’s. Hanna answers, “If it were me, I think I would make the same choice Kim made. But if it was someone I loved, a child of mine, my first instinct would be to protect them from it… Because another thing we value is self-acceptance. You don’t want someone spending their whole life grasping for an ideal version of themselves, and not the person who they are.” Alix then says, “I think that for Kim, seeing this other world, getting this other frame of reference… gave her self-awareness, and the grace of self-awareness. She was suddenly able to see clearly what she was, and what she wasn’t.”

I was listening to this episode with my oldest son, who shares Kim’s diagnosis. After the segment finished, I paused the podcast and asked him what he thought. He answered that he didn’t think he would want to get the treatment. I asked him why not. He said that he was okay with the way he processes the social world.

I then asked him about the video clips and what he would have heard. He said that while he would have noticed the nuances of the interaction (the body language, the facial expressions, the tone), he would have focused on her words and been confused.

But then he said two things that I found incredibly interesting. The first was about how he thought understanding people was like programming computers. He said that Kim’s experience of the video conversation was like when he wrote a program and thought it would work perfectly, and then when he tried to compile the code or run the program, it worked differently than he’d thought it would. This led him to look at the code carefully, and try again. And, inevitably, it would fail again, but in a different way. So he would try another fix, and another, and another, until he was able to get it right. He does the same thing when talking to others. Communication by successive approximation!

The second was about a book he read, Moral Politics – How Liberals and Conservatives Think, by George Lakoff. The most important lesson my son took from that book was that you can understand people if you can understand their frame of reference. When he first read the book, his frame of reference was that of a liberal. When viewing our political system through that framework, he was unable to understand why conservatives felt as they did about certain issues. After reading Lakoff’s book, he understood that conservatives have a different frame of reference, and it is not a bad frame, just a different frame. Prior to reading Moral Politics, he had no idea that he was biased in his perceptions. That’s true of everyone, he said. We all have our own unique frame of reference, shaped by our highly individual neurology and our experiences. As he spoke, I began to more clearly appreciate the fact that none of us can ever truly understand each other, just as we cannot truly understand ourselves.

We can just make successive approximations until we understand each other well enough.

The Parenting Tightrope

Walking the Parenting TightropeThis post was originally published on Parenting ADHD & Autism on March 28th, 2016. 

When you thought about having children, what were your dreams for your child? Happiness? Success? Financial security? A close circle of friends? A job they love? Did you want to protect your child from pain?

We all have dreams for our kids.

But as your kid grew, perhaps you noticed your child wasn’t like the other kids. You might have realized that other parents were taking their kids places your child couldn’t handle. Or you felt like you were navigating Mount Everest to do things that other parents did without a second thought. Maybe you saw that your child always played alone on the playground. Or the other kids began to actively avoid your child. Perhaps at some point, you became aware that your kid wasn’t being invited to birthday parties any more.

At home… who was this kid? Did you have a whirling dervish? A couch potato? Was your child lost in his own world? Did she talk nonstop about things no one seemed to care about?

And about those odd passions…. Did you find yourself noticing things you might have never thought to appreciate before you had children? The beauty of flowing water? The sound of silence? The gift of language? How things work? Facts about World War II, Star Wars, or My Little Pony?

There’s an essay that most parents of kids with autism read at some point called Welcome to Holland. I didn’t find it very satisfying. It didn’t give voice to the betrayal of my dreams for my child. It didn’t speak to my fears about the future. I remember at some point identifying more with another essay, Welcome to Beirut. But that one also felt unfair. My children and the people trying to help us aren’t terrorists. They are doing the best they can.

On the topic of dreams unrealized, a wise woman, Monica Adler Werner, once said, “All children take it out of you eventually. Kids with autism just take it out of you sooner.” This was in response to one of my fellow parents bemoaning the fact that her daughter wasn’t able to attend a summer camp that had been a cornerstone of her own childhood. This mom was sad because she had to relinquish yet another of her dreams.

As Penny Williams observed in a recent post, you can’t force a child to be someone they aren’t just because you wish they were different. When I find myself wanting to force my kids to do that, I remember the wise words of my friend, Marsha Mandel, who says, “You can’t make a flower grow by pulling on it.”

Kids have their own dreams. And the sooner you realize that you cannot force your child to follow your dreams, the easier your life will be. Instead of fighting your child, you’ll be encouraging them – helping them to be the best version of themselves.

Acceptance vs. Remediation

As parents, we are constantly walking a tightrope. To function in the outside world, there may be requirements that are beyond what our children can handle. Schools want our children to be able to sit still to learn. They may need our children to behave appropriately so they don’t distract the other kids. Professionals might tell you that outcomes are bad for kids who are so anxious they shut down when tested, or for those who have no friends. Family members may worry about the stress your child is placing on your family. Or they may have no patience for your child.

It is overwhelming. We want to respect our children’s dreams while preparing them for the future. Sometimes the worlds collide. The dream may not be possible given the reality of the child.

All you can do is your best. Follow your child’s lead. Let them show you where they want to go. And then do everything you can to help them make that happen, even when it is hard. Work with your child. Make sure they know that you are there to help them accomplish their dreams. If you can remember that your goal is to help them live their dreams, it will make it easier when the going gets tough.

A Guide to Your Child

A Guide To Your ChildHave you ever had the experience of realizing that your child’s public school teacher doesn’t know the accommodations on your child’s 504 plan or IEP? It makes sense – thirteen percent of kids have IEPs, another five percent have 504 plans. That means teachers need to keep track of the accommodations and/or services for nearly one-fifth of their students.  In a class of thirty kids, that’s six sets of accommodations to monitor. At the elementary school level, when teachers have the same kids all day, that might not be so difficult. But when you get to upper elementary, middle, or high school, with anywhere from 4-8 classes per teacher, that’s a lot to monitor.

You can help those teachers by providing them with a simplified summary that describes your child’s strengths, challenges, and accommodations. Your child can keep a copy of the accommodations in the front of his or her binder so there is always a copy to show the teacher when they need to request accommodations.

Collaborate with your child to create this guide – it’s a great way to foster self-understanding. I encourage children to give a copy of this guide to their teachers on the first day of school; it helps them learn to self-advocate.

Below is a sample for a high school student with high functioning autism that fits on one page (front and back).  One side provides a “profile” (a description of areas of strength and weakness) and the other side lists accommodations.


PROFILE for STUDENT NAME

Strengths

  • Visual information processing (spatial tasks, reading)
  • Loves science & technology and programming
  • Good writer
  • Wants very much to be a good student
  • Hard-­working
  • Deep thinker

Auditory Processing

  • Hearing impaired in left ear.
  • Difficulty hearing speech when there are other sounds present (e.g., talking, noise in the halls, etc.).

Social Skills

  • Don’t be deceived by his lack of affect and poor eye contact. If you are not sure he is paying attention or understands, just ask. His affect is not a reliable indicator of his level of interest or attention.

Attention Regulation

  • Difficulty sustaining focus for long periods of time.
  • Difficulty quickly shifting from one task to another.
  • Difficulty determining the main point of new information.
  • Sometimes impulsive.

Executive Functioning/ Organizational assistance

  • Strong desire to be a good student and to do as the teacher asks, but low confidence level in his ability to attend to details, manage long term projects, remember assignments, and be dependable. Common phrase, “I hate my brain.”
  • Difficulty doing simple daily tasks efficiently (seems disorganized).
  • Has trouble figuring out how to break down big projects into manageable chunks.
  • Difficulty remembering to turn in assignments.
  • Slow processing speed -­ needs time to come up with answers.

Oral Language Skills

  • Difficulty with oral word retrieval.

Physical Challenges

  • Has dyspraxia (developmental coordination disorder) which affects both fine and gross motor skills.
    • It is hard for him to write by hand for extended periods of time.
    • He is clumsy, so sports are very challenging for him.

Mood Regulation

  • Can appear emotionally reactive.
  • Anxious, depressed, socially withdrawn.

(end of page 1)


ACCOMMODATIONS

Auditory Processing

  • Give directions in written form (as opposed to strictly oral directions).
  • Receive written/visual copies of information presented orally that will be tested later.

Writing

  • He should have access to computer resources, including a printer; his handwriting is usually legible, but his hand is subject to fatigue for extended writing.
  • When possible, he finds having copies of classroom notes and lecture outlines (e.g., provided by a “class secretary” or teacher) extremely helpful.
  • Using graph paper to keep multi-­step problems aligned in math.
  • Extended time on copying tasks that cannot be avoided.

Slow Processing Speed

  • Provision of written versions of classroom notes, lecture outlines, and supplemental materials.
  • Allowing for “think time” when asking questions in class or one-­on-­one.
  • Extended test taking time (double time).
  • Extended time on assignments as needed.

Attention Regulation

  • Giving advance warning before transitions.
  • Cueing with phrases such as, “This is important…”
  • Give periodic reminders to stay on task.
  • Speak to him only when he is close-by and clearly attending to you.
  • Provide visual supports.

Executive Functioning/ Organizational assistance

  • Assignment planner checked daily for accuracy & completeness.
  • If assignment discovered missing, either when reviewing the online school system or by notification from teacher, ___ will have 2 school days to turn in a late assignment before it is counted as late.
  • Help him break down large tasks into smaller, more manageable chunks.
  • When ___ has difficulty understanding what an assignment involves, it will not be counted as late until 24 hours after he has gotten clarification that he can understand from the teacher in written form.
  • Allow assignments to be submitted electronically.

Social Skills

  • When there are group projects, ____ will need help finding a group, and working with them. He will need you to explain exactly what is expected of him.

Oral Language Skills

  • Cue for class participation -­ tell him what will be asked ahead of time so he has time to construct an answer and can participate in class more readily.

Mood Regulation

  • Provide regular positive feedback to help him overcome the emotional impact of his challenges.
  • Give him time and space to cool down; make no demands while he is dysregulated.

(end of page 2)


Teachers have told my clients that this simple guide has made it much easier for them to remember how to support their kids. It’s also helpful when your kids need to remind a teacher to implement their accommodations.

What’s so tough about brushing your teeth?

What's so tough about brushing your teeth? Let’s face it. Brushing your teeth is No Fun At All. You rub a bristly brush all over your teeth and gums and sometimes it hurts! That same brush is topped with a paste that tastes highly unnatural and foams the more you brush. And look at how you have to contort your hand just to get the brush to scrub every surface! How is a kid supposed to learn to do that?

Brushing teeth can be particularly tough for kids with sensory and/or motor control issues. They may hate the feel of the brush on their gums or their teeth, or they may hate the vibrations of an electric toothbrush. Or they may find the taste of toothpaste impossible to tolerate.

Give your kid a sense of control

First explain why dental hygiene is important.  If your child understands the benefits of toothbrushing, you may get better buy in.

Allow your child to experience the toothbrush on other parts of his body before asking him to put it in his mouth. Let him feel it in his hands, then on his arms, his neck, his cheeks. By slowly working your way towards his mouth, it will be less frightening when you finally ask him to open his mouth and let you brush his teeth.

Letting your child brush his own teeth will also allow him to anticipate when the toothbrush and toothpaste are going into his mouth, which will make it easier for him to brace himself. He may not get his teeth as clean as you do, but it’s a process, and giving him the opportunity to do it himself will build his sense of self-competence.

Allow him to pick out his own toothbrush.  He might be more willing to brush his teeth with a toothbrush in his favorite color or with a cool design on it.

 

Brush with softer bristles

If your kid has trouble with the sensation of the bristles on her teeth, she may prefer a toothbrush with soft bristles. Other solutions include using a washcloth, a cotton swab, or your finger. Or, you can try a silicone fingertip brush with nubs instead of bristles.

Many kids find vibrations soothing, and enjoy brushing with an electric toothbrush. If you want the best of both worlds, you can use an electric toothbrush with silicone bristles.

Adaptive Toothbrush

For kids with developing motor skills, using an adaptive toothbrush with three heads that allow you to brush the top and both sides of your teeth at once, without tilting the brush,  can make it much easier to do a good job with dental hygiene.

dr-barmans-superbrush1__43308.1425242036.1280.1280

How do I do this?

Some kids really don’t know how to brush their teeth. Kids love it when you do things with them, so brushing your teeth together can be a great way to show her what to do. Stand next to her while you both look in the mirror, and use exaggerated motions so it’s very clear what you are doing. Wait for her to imitate what you are doing before moving to the next step. Your child can also practice brushing the teeth of a doll or puppet.

Toothpaste

If it’s the taste of the toothpaste, you may want to let your child try different flavors  until he finds one he likes. Buy a small tube of a number of different kinds of toothpaste, and figure you are going to throw away a lot of toothpaste. Then your child can try the different options and tell you which ones are tolerable. You can put a small dab on the index finger, and have him touch his tongue to it and indicate how tolerable it is on a scale from 1 (tastes like raw sewage) to 5 (divine). I’d make sure to give him a HUGE REWARD for being willing to do these tests!

Some toothpastes foam more than others. If your kid is having trouble keeping the toothpaste in his mouth while brushing, a non-foaming toothpaste might work better.

If toothpaste is Right Out, you might consider using a fluoride rinse. If your child won’t swish the liquid around in her mouth, she might tolerate having you brush the fluoride rinse on her teeth.

Water temperature

Believe it or not, some kids have trouble with the temperature of the water. Try lukewarm water if you think this may be the issue.

This is going to take forever!

For other kids, it’s the time – they don’t realize how long 2 minutes really is. You can play a song while they are brushing or use a timer to help them think about how long they’ve been brushing.

Teach the skills one at a time

If your kid is struggling with every aspect of brushing his teeth, think about teaching the skills one at a time. Start by asking him to brush his teeth with a wet toothbrush (without toothpaste). Once he’s got the motor skills down, find a toothpaste he likes, and have him start brushing using that toothpaste. Layer the skills on, one at a time so it isn’t overwhelming.

Remember: Kids do well when they can! Your job is to figure out what is hard about toothbrushing, and help your child master the skills while respecting his or her profile. 

Kayaking Through Life: Supporting kids with challenges

Kayaking Through Life: Supporting kids with challengesIn a previous post, I talked about the importance of providing just the right amount of challenge. I made it sound so easy. It’s not. Kids respond in different ways to being challenged, and the ways they respond can drive a parent’s response. Below is a story that is a metaphor for raising kids who have very different responses to being challenged.

Last week, we were on vacation and went kayaking. My husband was at a conference, so I took my boys by myself. We have been kayaking as a family a number of times before, but always with two of us in each kayak – one adult and one child.

My oldest was worried about kayaking on his own, but there was no one else on our tour who was able to partner with him, so he had to figure out how to do it by himself (with help from the tour guide). He did a fantastic job; he kept up with the guide, controlled his kayak, and did well. At the end he felt good about the trip and his abilities.

That was not the case for my youngest, who was in a two-person kayak with me. Kayaking on the ocean, against the wind and tide which were pulling us strongly back to the shore, was a lot of work. My youngest has increasingly been unable to push himself to do things that are hard, and kayaking that day was hard work! So he would dip his paddle in, first on one side, then on the other. But he never actually pulled the paddles through the water so as to propel the kayak forward.

Mind you he is a teenager and now over 5 feet tall. When he was smaller and weighed less, it was easy enough to control the kayak with him in it. But I am no longer strong enough to maneuver and compensate for him. I was paddling as hard as I could to keep us from going backwards to the shore, and away from the group. I just couldn’t do it. About halfway into the tour, I realized that if we were going to have any hope of keeping up with the rest of the group, I had to move to the center of the kayak, and tell my son to quit paddling so my paddles wouldn’t hit his. This was the only way I could keep control of the kayak.

I was so grateful when the guide took pity on us and strapped a lead to our kayak to help us stay on track. With that assistance, and my more effective positioning, we were able to stay more or less with the group, even though my son was getting a free ride, doing no work at all.

Kayaking in Assateague

Kayaking in Assateague

It was a lot less frustrating, but I was exhausted, and worse, my son didn’t learn anything.

In the end, I regretted taking the trip, even though it was a wonderful tour. My youngest and I would have been much better off renting kayaks and dabbling around on our own in the marshes and along the shore, or working on paddle skills without the pressure of having to keep up with the rest of the group.

Later I realized that this was a good metaphor for what happens as we try to parent different kinds of kids. The kids who feel competent (even if they are scared) respond well to being challenged.

But there are other kids who are afraid of taking on challenges due to repeated failure, fear of failing, perfectionism, or some other challenge that has taught them that they will not succeed even when they try really hard. These kids can respond by becoming passive and increasingly hard to teach.

Our society demands that kids keep up, staying on a developmental track that allows them to function independently by the age of 18. If you have a child for whom that goal isn’t realistic, you may find yourself kayaking against the wind and tide, pulled farther and farther from the group.