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.

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