The Thin Line Between Too Much and Too Little: Navigating the Public with Autism

There are so many wonderful things about living with a child who is on the autism spectrum (formerly diagnosed with Aspergers). Really. There are.

Of course, there are also challenging things about living with said child.

Some of my biggest struggles come with the persistent and pervasive negativity, stubbornness, and lack of gratitude. A common factor in these traits is that they occur as his response to frustration. Another common factor in these traits is that they all make connection and attachment challenging.

I love my son, and I want to connect with him. That connection is hard to support (but not impossible!) when I allow myself to feel as if he’s taking advantage of me or that he does not recognize my contributions to his life (I sometimes struggle with being objective about his behavior), especially since understanding when he is attempting to connect with me can be very difficult.

Research has suggested that although Aspergers children are attached to their parents, their expression of this attachment is unusual and difficult to interpret. Moms and dads who looked forward to the joys of cuddling, teaching, and playing with their child may feel disappointed by this lack of expected attachment behavior. ~ “Aspergers Children and Attachment Problems” by My Aspergers Child.

Stubbornness and Negativity in Public

Tantrums and outbursts can be one of the hardest, most pressing issues for parents and professional team members to address with children affected by autism. They often crop up at the worst times, in public locations, and can go on for hours. Tantrums also can be much more intense and longer-lasting than those of a typical child.

Tantrums are a form of communication. They just happen to be a form that most parents don’t like. Tantrums typically build up from frustration, often stemming from communication issues. ~ “Eliminating Tantrums” by TACA

It’s also harder to connect when I feel the silent stares of judgment upon me in public when he responds negatively and stubbornly after I tell him, “No.” Sometimes it feels like a “damned if I do and damned if I don’t” situation. If I tell him no or refuse something he wants to do – or redirect him from something he’s currently doing, he might break out in whining, or crying, or his voice may rise. He might refuse to move in the middle of a store, zoo, or museum. It looks funny on an eleven year old, I know. Trust me. I do. If I were to not enforce the limits, though, the public also judges and says that I’m raising a spoiled child.

They “view learning to cope with ‘no’ as a crucial step in a child’s evolution,” Druckerman writes. “It forces them to understand that there are other people in the world, with needs as powerful as their own.” ~ “Spoiled Rotten” by Elizabeth Kolbert at The New Yorker

Saying no is important and enforcing limits is important, and he has to learn how to respond appropriately. He has to practice his coping skills. He even has to practice these skills in public. He doesn’t deserve to be locked up at home just so he doesn’t bother someone else. He’s a person and he has feelings – and not just those emotions that the random person in public is gazing on so negatively. He wants to belong and he feels frustrated when he senses that he doesn’t (not that he always senses this, which is what makes it so surprising when he does).

That doesn’t mean that I throw my son to the wolves in a situation that I know is setting him up for failure. It means that I’m constantly navigating this difficult and shifting path where I’m trying to decide when too much is too much and when too little is too little. I’m giving freedom and I’m setting limits, and then I’m reacting to cues he gives me to determine where on that too-little-too-much spectrum we are located. (While I’m simultaneously taking care of at least three other children.) Occasionally… Often… I might judge wrong.


I sometimes wish I could wear a trucker cap* that says, “It’s not us. It’s autism.”

It’s not him. He’s a delightful, hilarious, intelligent, well-meaning young man. He wants to behave. He cares about other people; he just doesn’t always display this in ways society accepts or understands. He wants to be seen as a good kid, a good son, and someone in whom to be proud. He does. I know he does. He cries nearly daily when he tells me so. One day he looked at me – not long after our lessons on the human body, his eyes full of pain, and said, “I think you and my dad gave me holey genes, Mom.”

It is neurologically difficult to shift attention if you are an individual with autism. Children with autism aren’t being bad or non-compliant. They are being autistic. This problem is not just a problem for us. It seems to be a problem for the children as well. ~ “Thoughtful Response in Agitation, Escalation and Meltdowns in Children with Autism Spectrum Disorders” by Rebecca Klaw, summarizing a study by Susan Bryson and Reginald Landry

It’s not me. I’m not the perfect parent, but I’m doing a good job. I am. I refuse to back down from that statement because it sounds arrogant. I’m doing a good job because when I make mistakes (which is sometimes quite often), I take responsibility, apologize, and learn from it. I get better every day, every week, every month, every year. I adapt to the needs of my children (biological or bonus), because children are not one size fits all. Like every other parent out there, I wasn’t handed a manual when my child was born. I definitely wasn’t handed a manual on how to manage special needs. But I sought out an education wherever I could: at college, through the Internet and parenting books, through friends and experts, and through life experiences. I’ve examined my values and discussed our values with my husband. We’ve thought long and hard about what we want to instill in our children. I consult with experts often to help me be better. Therefore, I’ve been taught and taught myself parenting skills that help me through these rough moments.

As parents or professionals, we are skilled in our delivery of front-end strategies because these strategies give us our peaceful and focused moments that optimize both functioning and learning.

But there are times that no matter how prepared we are for the anticipated challenge of our students, how diligent we are with rearranging the environment, with communicating appropriately and with fulfilling sensory needs, our students get agitated, this agitation escalates and they have a meltdown. ~ “Thoughtful Response in Agitation, Escalation and Meltdowns in Children with Autism Spectrum Disorders” by Rebecca Klaw

But those skills can’t eliminate those moments. And they don’t always work. I’m human, just like my son is. Sometimes I forget to use my skills (just as I often have to remind him to use his coping skills, he too sometimes gets to remind me).

Those unfavorable moments aren’t created by bad children or bad parents, just like positive moments aren’t created by good children or good parents. It’s not that binary. There are so many factors that go into behavior.

It’s can be easy to respond to negativity by clamping down and imposing your will, especially if you’re short on time or caught in an embarrassing situation. ~ “Children with Autism: How to Handle Stubborness and Negativity” by Teaching the Future

So, it’s not us. It’s not necessarily autism, either. I can’t blame it all on a label. It’s a blend. It’s a blend of his personality, his anxiety, his need to be perfect, his inability to understand the sensory environment, his body being overwhelmed by too much input, his brain not processing and remembering past consequences, his cognitive system whirring up and up and up until he can no longer problem solve or view a situation reasonably, his difficulties communicating his needs and feelings, his challenge with regulating his own mood, and my reaction to all the above.** So when you see me in public, either not reacting or not immediately shutting down his outbursts (despite how much I desperately, desperately want to), realize that when I’m quietly talking to him, patiently waiting, and using nonverbal cues, I’m validating his feelings and his thoughts so that his brain can begin to process everything that’s going on. I’m seeing the world through his eyes, picking my battles, and focusing on one thing at a time. By reacting objectively and connecting with him, I will help him wind back down. Recognize that I’m not fostering entitlement, I’m fostering resiliency. I’m modeling and helping him practice coping skills so that he will behave as expected as an adult.

Don’t judge us. If you do – and I notice it, I’m going to feel bad for a day or so, but then I’m going to remember that you’re not in our shoes and your values aren’t ours. I’m going to remember that my connection to and attachment with my child is far more important than your opinion. My child works very hard. I work very hard. It’s a process.

We’re not perfect; we’re learning and adapting and growing. Just like you.

* A trucker cap would be appropriate in this instance because I can’t carry around a billboard, and I swear these caps are the next largest thing. Unfortunately, I would look terrible in a trucker cap.

** Thanks to Rebecca Klaw’s article for helping me to formulate this list.

Cleaning your bedroom can be very lonely

I stepped into her room and had to swallow a gasp. An explosion. An implosion? I wasn’t sure, but one of the two had clearly happened. There were bits of paper and cardboard and ribbon – and yes, even a granola bar wrapper – strewn about the room. American Girl dolls clearly had been a love for a while because the brand screamed its name loudly among the chaos – a science set here, a pink scooter there, an outfit or ten over there and there and there and there, several dolls lying haphazardly around the floor. I thought back to my childhood where I’d just wanted one doll. Just one. My daughter has several. She’s clearly spoiled (in this case by her very loving Nana). Colored pencils and markers and paintbrushes were peeking out here and there throughout the chaos. Clothes from Children’s Place and Kohl’s and Target. Books. Oh my. The books. My heart swelled with a little pride at my devout reader even as it cringed in fear from the monster that was surely going to rise up and eat us all.

She’s nine. She’s a hoarder.

It’s true.


Normally we keep a lid on the chaos by tossing boxes and containers her way that she can store all her beloved treasures in. Feathers, pine needles, geodes, other rocks, acorn caps, pine tree sap (don’t even ASK – I know I sure didn’t), drawings upon drawings upon drawings upon drawings.

She’s a budding scientist, an avid reader, an artist, and a little girl.


This little girl’s room was terrible. I couldn’t do it. I couldn’t walk out and leave that there. It was intense. The gene that makes me crave organization rose up and ran in terror through my entire body. I got chills and a little nauseated.

Maybe I’m exaggerating a little. Then again, my temper about hit the flash point, so maybe I’m not.


I told her to stay in her room and look around for things she could clean. I came upstairs to my office (which doubles as my bedroom depending on the time of day). I started googling. “My daughter will not clean her room” the search string read. It could very well have had some four-letter words in there, but I somehow, miraculously, refrained.

One of the first hits reminded me of a strategy I used to employ. A strategy I’d researched before and used when I was really upset. A strategy that for some reason had completely eluded me recently. Why is it that sometimes we have all the best intentions and training and knowledge and education, but we completely forget it? I’ve probably learned every great parenting tactic out there at least once, but they don’t seem to rise up to the forefront when I’m in the moment.


I went back downstairs with my coupons from the Sunday paper and my coupon organization book. I grabbed my iPhone. I grabbed some Cheez-Its. (Yes, I blush as I recollect this, but I am attempting to live out loud HONESTLY.) I set up Audible with Dragonflight by Anne McCaffrey, then paused it. (As a side note, I’d been lucky enough to take advantage of a sale Audible was having where you can buy two books with one credit. Dragonflight was one of the ones I purchased; Journey to the Center of the Earth with Tim Curry was the other.)

“Sammi. I am going to sit here and go through my coupons. We’re going to listen to a book. Whenever you get stuck, I’m here to help. Whenever you stop, so does the book. Here’s the trashcan. Let’s figure out a place for everything so everything can be in its place.”

She looked relieved. Why had I forgotten how lonely it is to be confronted with a huge mess and be told you have to spend time cleaning it on your own? Why had I forgotten how overwhelming it is when you aren’t really sure what to do with your things? I struggle with it myself in my office (slash bedroom) where it seems like paper gets together and breeds like mice. I think the paper was taking clues from the dust bunnies under our bed, and I’m tired of the rodent-like behavior.


I sat down in her incredibly soft aqua saucer chair and got to work.

Happily. Surprisingly. Delightfully. So did she.

Pant Legs Can Be Quite Tricky

I originally intended for my first post to be a “Goals for 2016” post. However, I’ve already been procrastinating in 2016. Instead, I hope you enjoy the following personal essay instead.

Gabriel held his green Thomas the Train pajama pants up in the air, one pant leg clearly inside out. I’d been watching to see if he’d figure it out on his own. “Uuuuuh! I need HELP! Help! Unnnnhh!” He fruitlessly tried to pull the pants up his legs, his tiny three year old foot hammering into the underside of the fabric. “Maaaaama!”

I crouched down beside him. “Bubbe, I can see and hear that you are frustrated. Take a deep breath. I’m here to help.” I flipped the pant leg back the correct way, but before I could assist him any further, he interjected-

“Mama. I DO IT.” He grabbed the pants from me and slid them up his legs. He unsteadily attempted to stand, wobbling with the pants around his ankles. I took a deep breath and swallowed the aggravation. I was there to support him; I wasn’t there to do it all. I held out my hand and he grasped on. My hand gave his a gentle squeeze.

“Look at you, Gabe. You’re getting so big. Look at everything you can do.” My voice was proud – and calm, despite the sometimes-trying outbursts.

He beamed up at me. “I grow so big. I be a DOCTOR!”

Maybe. Maybe he will grow up to be a doctor. Maybe not. I think he probably got the idea from the doctor costume he got for Christmas. He has been playing with it a lot lately. So has his big sister. It doesn’t really matter, though I file the information away because he might be more interested in medical-related play and learning. He is just three. His interests will change. He’ll learn that there is a big, wide-open world out there with so many choices.

Right now, though, he still needs my help. He needs me to flip open his pant legs and reassure him with my language and tone. He needs my hugs and my kisses and my love. He’s not ready for that world of choices, and that’s just fine with me.