How Words Can Reduce Behavior Breakdowns for Kids with ASD

kaboompics.com_Young boy sitting on sofa with tablet pc-ipad-child-teen-stock

This is a guest post for parents by Karen Kabaki-Sisto, a certified Speech-Language Pathologist and Applied Behavior Analysis Instructor.

Imagine that you suddenly awoke today in rural Peru with only the limited knowledge of Spanish from when you studied it many years ago in high school. Undoubtedly, you will be struggling to communicate with the locals in this region who do not speak English. As your words and gestures continue to get misinterpreted, your frustration, fear, exhaustion, and anger rises.

This is how your child with autism can feel every day – every minute, in fact – right here at home in the company of people who do speak the same language.  Even though your child with autism understands and expresses to some degree, it is not always easy.  Difficulty understanding and being understood can cause your child to feel embarrassment, confusion, and frustration which can lead to challenging behaviors.  Just as adults and other family members may be frustrated by your child’s behaviors, your child can be frustrated by others’ behaviors toward him – or the lack of actions to help him – resulting in a continuous cycle of communication and, ultimately, a behavior breakdown.

A key way you can communicate more effectively to maintain positive feelings is to turn indirect language into direct language by being very explicit and specific.  Let’s explore some examples that I have witnessed:

A family was painting their walls, and some paint had fallen into a puddle onto the floor.  Their son was about to step in it when his father loudly shouted his name.  The boy saw his father’s shocked and nervous face and heard his dad say, “Be careful!”. However, the son proceeded to step into the paint, then walked throughout the house. Needless to say, no one was thrilled.

Child’s Perception: I see Dad’s face, but I can’t perceive what his expression means.  I hear Dad’s words, but I can’t interpret what they mean.

Child’s Thinking: Life as usual.

Social Outcome: I’ll continue my course of action, which is to step into the paint that I don’t know is there.

Why?  This child doesn’t understand implied or indirect language, the meaning of which requires interpretation. What exactly does “Be careful” or to literally ‘be full of care’ mean? Even if he realizes that it is a warning, he’s unsure of what the concern is, where the danger is coming from, what exactly he should or should not do, and what could happen.  Further, this child does not understand non-verbal body language, facial expressions, and tone of voice, so he could not make sense of these cues to take the proper action.

Solution: Turn indirect language into direct language.  This dad can give specific details about where the problem is and what action(s) the child should and should not do next. He could say, “Be careful!  There’s paint on the floor next to your right foot.  Look down at the paint.  Don’t step in it.  Walk around the paint.”  He can explicitly define his facial expressions and tone of voice by saying, “Look at my face and listen to my voice – this is my worried/shocked/nervous face and voice.”

A child asks her mother if they can go to the park.  The mother says, “I don’t know.” The child continually asks her, and she gives various responses like, “Maybe…we’ll see. I’m not sure.”  Then, the child threw herself on the floor crying.

Child’s Perception: Mom is withholding information that she does, in fact, know.

Child’s Thinking: I want a definite “yes/no” answer.

Social Outcome: I’ll tantrum until she tells me “yes” or “no”.

Why?  The actual words are a problem as this child does not understand probability and uncertainty.

Solution: Turn indirect language into direct language. This mother can guide her child’s understanding with pictures or word-like formulas to explain conditional “if/then” situations.  Explain that we first have to wait for certain events to happen before we know which activities we’ll be able to do.  This mom can tell her child, “Look at the clock.  Right now it is 12:00.  If it is sunny at 12:30, then we will go to the park. If it is raining at 12:30, then we will stay home. At 12:30, you tell me if it is sunny or raining.

Or, this mother can use pictorial formulas like:
[Sunny picture] at 12:30 = [Park picture]
[Rainy picture] at 12:30 = [House picture]

Your daughter with autism kicks her brother by accident under the table. Your son shouts, “Cut it out!”. Despite his shouting at her, she continues to keep her chair and legs in close proximity to him, causing the accidental kicking to continue.

Child’s Perception: Something might be wrong.

Child’s Thinking: I’m not quite sure what it is, so it’s life as usual.

Social Outcome:  I’ll continue my course of action, which is to stay where I’m seated and continue swaying my legs.

Why?  The actual words are a problem as this child does not understand figures-of-speech. Her brother’s words might be literally interpreted that is that there is nothing here to ‘cut out’ with scissors.  Even if your daughter knows that this phrase means he is upset with something she is doing, she might not be aware of exactly what behavior to which he is referring.

Solution: Turn indirect language into direct language. Model a new set of direct words for your son to use as an explanation: “Josh, tell Kayla, ‘You are kicking me.  Please stop kicking me.  Move your chair away from the table a little bit.  Keep your feet on the ground.’”

We all try to improve how to be considerate of each other’s needs.  At first, it may be challenging to use these re-phrasing techniques because of emotions and the urgency of a situation.  Over time, you will learn how to communicate in more effective ways with your child that will, in turn, improve his or her communication with you.  As you more consistently model language from your child’s point-of-view, your child will be able to develop stronger skills of perception, thinking, and social communication which leads to stronger family and social relationships.



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unnamedAbout the author:
Karen Kabaki-Sisto, M.S. CCC-SLP, is a Communication Expert and Advocate helping people with autism for over 20 years. As a certified Speech-Language Pathologist and Applied Behavior Analysis Instructor, Karen has been empowering people with autism & special needs to have more meaningful conversations like never before. Her highly effective “I CAN! For Autism Method™” – perfected for over 10 years and now incorporated within the iPad app “I Can Have Conversations With You!™” – is changing lives through improved social and language skills. It is 100% fun for both kids and adults to use! Check it out at

The First Time I Realized My Nonverbal Autistic Child Was Communicating


This is a guest post for parents by Marci Lebowitz, OT and Autism Specialist.  


Danelle and Oliva’s Breakthrough Moment
“The first time I realized my nonverbal child, Olivia, was trying to communicate with me I just lost it. It felt like every emotion I had ever experienced rushed through me all at once. I felt immense joy that I could now get a glimpse into her world that had been hidden away from me for so many years. But I also felt some level of guilt and regret that I hadn’t noticed earlier. I’m sharing my story here to hopefully help one or two of you parents of not-so-verbal children with autism have an experience similar to mine.

Screen Shot 2015-12-14 at 3.48.50 PMIn the beginning of my autism journey I was exhausted. I was frustrated, and like many of us, I was scrambling for answers. When I wasn’t reading every autism book I could get my hands on, I used any free moment to catch up on housework, emails and the hundreds of other daily tasks clamoring for my attention.

Unfortunately, I wasn’t spending much of my time being present with my child. When I wanted to occupy Oliva I would give her my iPad, her most prized possession. I knew it would keep her attention long enough for me to make some progress on whatever task I was wrestling with at the time. Her time on the iPad was mostly spent watching videos. Unbeknownst to me, this would be the key to us bonding and communicating.

One day when I finally felt like I could take a much needed breath, I sat down next to Olivia and watched one of the videos she had been playing that day like a broken record. It was about playing outside in the water. I don’t know how or why it struck me, but my intuition said that maybe she was playing the song for a reason. Maybe she longed for what the song was about, playing outside in the water.

So I grabbed her up and brought her outside to sit by our pool. I saw her eyes brighten in a way they never had before, and I felt her relax back in a big way. She knew that I got her message. Finally, someone understood her. All this time she had been playing me songs to send me messages, but I was too much of a nervous wreck to notice.

After I realized what was happening with her songs, our interactions became more frequent and joyful. We delighted in this new found medium for communicating what we had been trying to say to each other for so long. Even though to the outside world it didn’t look like a typical conversation, it felt more intense than any other interaction I’ve had with another person.


What amazed me was the fact that when I joined her in her favorite activity, it ended up giving me the answers I was looking for on how to reach her. Our encounters led to more smiles exchanged, improved eye contact, and eventually other forms of intuitive and now verbal communication. To be honest, I felt embarrassed that it took me so long to figure it out. If I hadn’t taken the time to slow down, calm and catch my breath, I may have never received her messages.”


The First Step to Having a Communication Breakthrough

The above story is from my former client and good friend, Danelle Shouse, who is now an autism specialist herself. I had the honor of supporting Danelle and Olivia during their journey to discovering how to communicate. I believe one of the reasons Danelle was able to figure out how to bond so deeply with her child was because she learned how to communicate with Olivia on Oliva’s terms first. Before making this commitment Danelle was swept up in the busyness of life and felt lost in how to reach her child.

The first and most important step we worked on to help Oliva was to help her mother calm her own overactive mind and nervous system. When a parent learns to calm themselves it does wonders for both the parent and the autistic child. The reason calming so profoundly affects the child is because autistic children are like perfect tuning forks for the moods and emotions of their parents. The more stressed out the parent becomes, the more anxious the child will behave. In turn, the anxious child will then act out and make the parent even more stressed. And this mirroring cycle continues until the parent decides to calm.


Once you stop trying to anticipate your child’s next meltdown, and instead turn your attention to calming yourself, your child will notice the shift in you. Your calmness will feel like a warm blanket to them. The safer they feel with you, the easier it will be for them to try and communicate with you in whatever way is possible for them.

When you approach your child calmly, this will allow you to decipher the communication clues your child is sending you with clarity. Your high-strung nerves can melt away into compassion, bringing a sense of peace to both you and your child. For a deeper look into the calming and communication methods I employed with Danelle and many others get my free eBook, Autism Simplified for Parents. It’s a quick and easy read with tons of useful, actionable information that will make your parenting life easier.




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Marci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at

Tips For Calming Your Child With Autism – Calm Yourself First! (Part 3)


This blog is part of a four-part support series for parents by Marci Lebowitz, OT and Autism Specialist.  Watch for Marci’s blogs to help you distinguish between tantrums and meltdowns, tips to manage tantrums and meltdowns and meltdown prevention tips.   Find out more about how Marci supports autism parents and professionals at

An Autism Parent’s Approach to Calming
Recently my brother and my son joined me at an outdoor event that I was working at. Wyatt, my 15 year old who has autism, was not interested in sitting with me so they went for a nice stroll, lunch and later returned to the relative peace and quiet of our van.

All the changes in a the environment, the sounds, the lights, the crowds were too much. In a short period of time, Wyatt had escalated and had a meltdown.

When my cell phone rang, I could see the call was from my brother and I was curious to hear how things were going. However it only took a couple of words from my brother to recognize the alarm and anxiety in his voice. He was using what we call his 911 voice. This triggered a refined and honed process for me. The first step was to calm myself and to walk quickly with an air of relaxation over to where my van was parked, which had become the focus of many people.

I quietly approached Wyatt and my brother saying nothing and taking in the scene. The fire department, the paramedics, patrol cars and onlookers surrounded them. I recognized Wyatt’s severe discomfort and knew he was very close to the point where he could injure himself.

It was all escalating very rapidly.

It was time for me to take control of all aspects of this situation. The first thing I did was to become as calm as I could. I worked to slow down my breathing. Then I began to support Wyatt as he was escalating rapidly. I gently explained to him that I was there for him, he was safe, and I was helping him. I never tell him to calm down. For most people with autism this simply makes things worse. I gently acknowledged his state with firmness and resolve while keeping us both safe and letting him sense that I was comfortable and in control of this situation.

Within a few minutes of my arrival, I reassured the onlookers and convinced the town’s emergency services that we were fine, I used the simple system to help Wyatt de-escalate.

I have learned that I calm my son by:

  • Being able to calm myself first.
  • Helping him feel emotionally understood, safe and surrounded by people who are in control.
  • Finding effective sensory comfort combinations that relieve his stress.

~Kelly Green, Parent/Advocate,

Tips For Calming Your Child: Please Calm Yourself First
breathe-paintingThis article is going to help you learn how to work with Kelly’s point #1 – The importance of being able to calm yourself first.

Most of us have been taught to calm a child by doing specific techniques on the child. While these are very important, there is something else you can do as a first step that will profoundly impact your ability to soothe your child.

Have you considered that your own emotional state may play a role in your child’s responses? Autistic children are extraordinarily sensitive to the emotions of others and they mirror the state of those around them. If you are anxious and your child is already anxious, your child may become overwhelmed. While your being calm, relaxed and feeling in control will not totally relax your child, it is a fundamental step to beginning to help your child to relax. Besides your own state of calm, there is a need to help them feel understood, safe, and to have effective sensory calming strategies.

An integral part of feeling calm is efficient breathing. Please refer to my first blog post if you haven’t read it to understand the importance of breathing in self-regulation. When breathing is inefficient, it creates anxiety which can make a person become more amped up and anxious. They can feel spacey, have difficulties focusing, thinking, problem solving, following directions and cooperating.

When you are around someone who is anxious, have you ever noticed yourself becoming more anxious and wound up? Have you ever experienced being around someone who is calm? Do you notice that you relax just being around them? The same is true for children with autism. Their anxiety can come from: not understanding what is expected of them, not understanding sequencing or timing and also feeling the anxiety and unrest of others. As mentioned in Blog Post #1, I have found that most children with autism are chest breathers. Chronic chest breathing can contribute to anxiety, heightened sensory awareness and stress.

As A Parent, What Can You Do To Help?
I’d like to encourage you to begin to explore ways to relax yourself, so that you are able to change your state to one of calm during the times your child needs you most. I know you have a lot on your plate, however, investing in learning to calm yourself can have rich rewards. As a result, you can have a calmer, more relaxed child.

In this article I will offer you simple, do-able suggestions that you can implement in the course of your daily life. These won’t require you having the perfect environment, to stop what you are doing or have a lot of time to practice. These can be easily integrated into your daily lifestyle and routine, possibly in the car, washing dishes, doing laundry, making dinner, putting kids to bed, etc.

Tip #1 – Understand The Impact Of Your State On Your Child

Being calm at your child’s times of need gives them a feeling of calm they can begin to mirror.
Managing your own state as a parent influences your child’s behavior as well as the emotional state of others around you. If we are out of control and frantic, other people will mirror this. If we can learn how to approach the situation of our child melting down in public calmly, and are able to calmly reassure others around us, everyone will sense that you know what you are doing, you are in control of the situation and that they are safe.
With this sense of control, it helps the autistic child move within the energy of others, and you can begin to relax when you and your supersensitive child is outside of the house.

Tip #2 – Learn Simple Breathing Patterns To Be Done During Daily Life Routines

Children will mirror your breathing patterns. This is called resonance.
The most important part of the breathing pattern is the exhale. Allow yourself to take a gentle inhale through your nose, and exhale through your mouth as if you are sighing while gently pulling in your tummy.
body-lungs-breathA simple practice is to focus on exhaling three times. This will help you to begin to slow down and relax. Though very simple, this practice is very powerful to quickly settle down.
You can put a notes around the house reminding you to breathe three times. These reminders are great when it is hard to think in the chaos.
Observe your child after you’ve done some gentle breathing to see if they may have relaxed a bit.

Tip #3 – Practice Breathing When You Lay Down In Bed

It is easier to do this next step if you are laying down. Place your hand on your belly and gently inhale through your nose and exhale through your mouth. The hand placement will help you focus on using your diaphragm to breathe. Remember, if you try to breathe in harshly when you don’t have strong diaphragmatic control, it can make you feel more anxious.
Instead of your hand, you can place a warm compress, water bottle, heated buckwheat bags on your belly and see if it helps you breath more deeply and relax.

Learning to shifting your state and calm does not happen over night. Please be patient with yourself as you learn to do this. I hope you find that it is worth exploring, to not only provide you with some peace, as well as, your child and possible your entire family.

In next weeks post, we will explore calming solutions that you can do directly with your child to help prevent meltdowns.

Please leave me your thoughts about how your ability to calm has impacted your child.
I love hearing from you!


Join the social network for parents of children on the autism spectrum:

PictureMarci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at www.

What Causes Meltdowns May Be Different Than You Think, Part 1


This blog is part of a four-part support series for parents by Marci Lebowitz, OT and Autism Specialist.  Watch for Marci’s blogs to help you distinguish between tantrums and meltdowns, tips to manage tantrums and meltdowns and meltdown prevention tips.   Find out more about how Marci supports autism parents and professionals at

What Causes Meltdowns May Be Different Than You Think

For many parents, the very thought of taking your autistic child to the mall can stir up anxiety and brings up memories of previous experiences.  This can come from the concern about how others may react if you child has a meltdown and also evoke feelings of helplessness and shared pain for your child.  As a result, you may limit your treks out into the world because it is easier to stay out of the public view and in a calmer environment like home. Though meltdowns can easily happen at your home, somehow they feel more manageable in the safest environment.  The reality is that there are times when you have to go with your child to the mall and you are willing that this time it will go well.

Things can be okay and then wham, too much stimulus coming in so fast.  Too many lights, sounds, smells, emotions, touch, hot and stuffy air.   Simply too much of everything bombards them.   Because their heightened nervous and sensory system are constantly “switched on”, they seem to be constantly receiving too much input from the environment or some subtle, internal reaction. Each stimulus builds on the last and can create a feeling of overwhelming suffocation.  This is also known as sensory overload.

Although it may not be clear what specifically is causing the overload, you know the signs when your child is beginning to escalate.  You watch their reactions heighten and their anxiety rev up.  They may begin to yell, to cry or screech.  Then it comes on fast, the meltdown occurs.  Full-blown with maybe hitting, biting, kicking and screaming.  Their focus is gone and the outburst takes over.  Your baby, your child, your love.

What Can Cause These Extreme Reactions?

There is a link between poor breathing and heightened anxiety.   What will register as extreme anxiety for an autistic, may feel like simple fear to us.  Their fight and flight mechanism is running all the time. When caught in a constant feedback loop of fight or flight, these children have an extremely difficult time making accurate value judgements of situations.  They experience stimuli and circumstances as threatening, intrusive or painful.  Because of their exquisite sensitivity, they often feel that many people and situations are unpredictable and frightening.  Fight, flight or freeze becomes their primary option.

If you observe a child when they are in complete sensory overload or during a meltdown you may notice they are holding their breath.  They do not exhale and are only able to take tiny shallow inhalations, so over time there is more and more stale air in their body and less space to breathe in fresh air. They simply cannot breathe fully which I believe contributes to their panic and escalation of challenging behaviors. Some believe that the child may feel like they are suffocating which must be very terrifying for them.
Think about when you are anxious…   Do you notice your breath may become short, ragged or you may even hold your breath?   This is amplified for people with autism.

When a threatening situation ends, our bodies and breath should calm.  For the children because of their constant state of fight or flight, they may calm down a bit and take a deep breath at the end of a threatening situation, but it is usually from their chest, not from their diaphragm.  If you watch them closely, they are calmer but they never seem to fully calm down.  A telltale sign is that they put all their effort into inhaling, not exhaling. In efficient breathing the effort is on the exhalation in which the muscles relax and the inhalation is gentle and without effort.

In my decade of work as an Occupational Therapist with children with severe autism and aggression, I have consistently noticed these children breathe only from their upper chest, rarely do they breathe deeply from the diaphragm.  It is easier for us to see that they have poor core strength.  This is actually an indicator that the diaphragm is weak and does not work effectively.

Do You Know The Signs Of Upper Chest Breathing?

-Pressured speech or vocalizations.
-Shrill voice.
-Difficulties listening to others.
-Not present.
-Difficulties with focus, processing and memory.
-Absent, glazed look.
-Muscle tightness.
-Difficulties taking a breath.
-Difficulties pausing when talking.
-A clenched jaw.
-Poor Posture:  hunched or high guard.
-Inability to sit up straight.

Does this remind you of your child?

Other Causes of Sensory Overload  

There also may be severe, underlying or undetected medical conditions causing sensory overload including conditions like toothaches, stomach aches, seizures, earaches and headaches.   Medications or medication changes can also cause heightened reactions.  For many, particularly those that are non-verbal it is extremely difficult for them to communicate to us what they are experiencing.
Many but not all manifestations of underlying medical conditions also are present with compromised breathing.

Effective Respiration and Diaphragmatic Control Is Essential For:

◦ Strengthening the immune system, brain and gut.
◦ Reducing inflammation.
◦ Speech.
◦ Posture.
◦ A good nights sleep.
◦ Motor control.
◦ Emotional regulation.
◦ Ability to self-soothe.
◦ Processing, thinking, concentration and focus.
◦ Effective colon motility.
◦ Lymphatic drainage.
◦ Neural development.

Gentle Tips To Promote Breathing

I encourage you to examine your child’s diaphragm to see if you can detect movement.  You’ll see the belly go in and out while they are breathing.  Also, look at the chest.  If the rising and falling occurs only at the chest and not at the belly, this indicates that they are only upper chest breathing.  Look for where they exert their maximum effort.   Is it on the inhalation or the exhalation?

A simple thing you can do to begin to help open your child’s diaphragm is to gently place your (warm) hand on their belly with the intention to help them relax.  It is easier to do this when they are laying down.  I would recommend only doing this when they are in a calm.  Please do not attempt this when they are upset or melting down as this may not relax or calm them.  You don’t have to tell them to breathe, your gentle hand on their belly should help them to relax and their breathing may slow.  Simply hold your hand on their belly for two-three minutes and breathe yourself!  Bedtime or couch time is a really good time to try this.

straw-in-glassWe’ve been taught to focus on the inhale.  However, research shows that the part of the breath cycle that is most important for relaxation is the exhale.  Usually we tell people to inhale if they are upset to calm.  If they do not have good diaphragmatic control, a strong inhalation can make them feel more anxious as the chest can become tighter.  By getting them to exhale first, it creates more space for fresh air to be inhaled.

You want to gently exhale the stale air out of the lungs.  Try taking a very small, gentle inhale through your nose and blow out the air through your mouth.  See if this helps to relax your body.  You can do this with “low functioning” children by having them use a straw to breathe.  It is really difficult to take a hard inhale through a straw and much easier to exhale.

I’d love for you to share your thoughts with me.  Leave me a comment and let me know about your child’s breathing.  Do they have any movement in their diaphragm or is it all in their upper chest




Join the social network for parents of children on the autism spectrum:

PictureMarci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at www.

“Because I Have Autism” – Child Of Mine

Child of Mine, a guest post by Alysia.

Last week I got an email from one of Howie’s teachers.  She explained that they had been working on a math assessment test about money and coins.  The directions were to count the money and show your work.  The teacher said that Howie had refused to show his work. His explanation was that he didn’t have to “because I have autism.”

She wrote that they had worked through the refusal by reminding him that this was for his third grade teachers and while she knew he could do it in his head, he needed to show his new teachers that he understood the work.

Now Howie has never been a big fan of reviewing concepts.  “I already know how to do this!” is a frequent refrain when doing assessments or review work.  But this was a new wrinkle.  He had never refused to do work because of autism before.

I wrote back and said I was kind of stunned by all of this since we’ve never said anything like that to him or around him before.  We’ve always talked about autism – and specifically his autism – in a positive light.  Talking about the gifts it brings him.  Lately we had been discussing how there are times when different brains have a harder time with some activities, and that’s why sometimes he needed to leave the room to take a test, or use his headphones or have a sensory break.  But we’ve never said he couldn’t do…anything.

I expressed my surprise at his statement and said I would talk with him about it.

Later that afternoon, Howie and I were sitting across from each other on the floor of our living room.  His iPad was on his lap and he was creating his newest world on his Blocksworld app.

“Hey bud’” I said. ” I heard that you had some trouble working on your math assessment today?”

“Yeah.  But the fruit snacks helped me get through it.”

“What was hard?”

“I had to write it all out but I knew the answer.”

“Your teacher said you told her that you couldn’t do the test because you had autism?”

” I said I didn’t have to do the work because I had autism,” he said. He didn’t look up at all.

“Well, autism isn’t an excuse you know,” I said. ” You can do hard things. But you still need to do the work.”

“I didn’t say I couldn’t,” he said.  “I said I didn’t have to.  I didn’t have to show my work. I could see it and do it in my head.”

I sat there and just looked at him.  His eyes never left the iPad, fingers moving and swiping and tapping as he built a cityscape for his Blocksworld cars to drive through.

Paperlace-buttefly-150x150Not an excuse.

A reason.

Not a negative.  A positive.

Not can’t do. Don’t have to to understand.

Part of his gift.  He could see it in his head. So why do the extra work?

He wasn’t trying to get out of doing the test itself.  Just the showing his work.  And not because he didn’t want to.

Because I didn’t have to.

He was actually advocating for himself.

“I understand now,” I said.  “But you know there will be times when you have to show your work, even when you can do it in your head.  It’s important for other people to see what you see.”

“I know,” he said. ” And the fruit snacks were really good.”

“The things that make me different are the things that make me ME!” – Piglet quote on the wall of our sensory gym.

In our world, autism isn’t and won’t be an excuse.  We’re never going to teach him he can’t do something because of how his brain is wired.

But it can be a reason why things are hard. Or, in this case, easy.

Maybe it’s semantics.

This is why we felt it was important that Howie knows and understands his diagnosis. So he could say, “I see this differently because my brain is wired differently.”

He knows he leaves to take tests in a quiet space so he doesn’t get distracted.  We are working on helping him understand that his aide is there as a “coach” and “interpreter” when he needs help.

But he also needs to know that we will listen to what he is really saying and doing and go beyond the specific words that he is using  in order to make sure that we understand their meaning.  Because here he was, in his way, appropriately advocating for himself.

It’s our job to make sure we hear him when he does.


Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you’ve designed
Oh yes, sweet darling
So glad you are a child of mine.
Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine.” – Child of Mine by Carole King

This guest post was written by Alysia of Try Defying Gravity and is republished here with permission.


The Hardest Part of Autism Isn’t Him – It’s Other People


lauren-casperPart of the problem with “disabilities” is that the word immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or can’t talk about their feelings? Or can’t manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the truly crippling disabilities. -Fred Rogers

This is a special guest post by Lauren Casper. It is the first in our series of stories of encouragement for autism parents.


Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course it’s hard and of course there are evenings when I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…

What’s the hardest part?” And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment. I can feel it in the store when Mareto’s getting upset and I have to hide in an empty aisle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for Diesel 10!” when someone says hello.

But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until two years ago, so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items, it can be awkward. The look of shock can sting, and I remember again that this isn’t everyone’s normal.

laurencasper These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad and you’re bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy or I’m not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realized that one of the reasons I was so excited about my other child, Arsema, being potty trained, was that people might now see that we actually are capable of potty training and it isn’t laziness that’s keeping Mareto in diapers.

But do you know what’s even worse? When you take your kids to the playground and they’re having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up, exposing the top of his diaper above his pants. And all the little kids start laughing and pointing and saying, “Look! That boy is wearing a diaper!” Or when the 3-year-old looks at you over gingerbread houses and asks why your precious, funny and brilliant little boy is so dumb. Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. That moment when you realize people are going to stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.

Now that Mareto is growing older, the differences are more apparent. They can’t be waved away or explained as typical toddler behavior. It’s a little more noticeable when a child the size of a 6-year-old isn’t potty trained. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism — my inability to shield him forever from judgment, ridicule and mean children and adults.

And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He “rescues” his sister from nap time. He comforts crying children. He loves animals. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.

So are the endless sleepless nights rough? Yes. Changing a 50-pound boy’s diaper isn’t my favorite. We’ve been working for nearly two years to get my son to move beyond his three foods. But those things don’t matter much. laurencasper Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted — and not just accepted, but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences, and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.

This post originally appeared on and Huffington Post.


Music & Autism: How Music Helped One Mother Connect With Her Son

music “Music is the shorthand of emotion” – Leo Tolstoy

After her friend suggested that she join MyAutismTeam, Amy Pentz, of Riverview, Florida, used her phone to check it out. On the homepage of the social network for parents of kids with autism, she played the MyAutismTeam video tour, while her almost-3-year old son watched a movie. When the theme music for the video tour began, her son’s ears perked up, he turned around, began dancing, moving his arms and feet, smiling, making eye contact, and for a moment, “Autism didn’t exist. The music was so cheery, it made him happy listening to it,” says Amy, the self-described stay at home mom.


Amy joined MyAutismTeam to get “a little help, support and camaraderie” from other parents who’ve been in her shoes. She wanted to be connected to those who understood the daily ups and downs of raising a child with autism. Little did she realize she would end up connecting even more with her son, Dayne, with the music from the site. read more…