A whole new way to engage autism

Welcome parents, caregivers, and professionals! Our new nonprofit invites your engagement in services that provide support, guidance, and education. We’re here to empower young families living with autism.

Your relationship with your child is so important to his social and emotional well being — now and throughout his lifetime. You spend the most time living with and loving your child. You have the greatest commitment to his development and lifelong happiness. But autism can make it hard to connect with your child. And because each child expresses autism in an individual way, it can be a confusing, frustrating, and time consuming process to find ways to support your child’s specific needs. We know. We’re there too.

We believe that parents are the key to lifelong success for children living with autism. It is, after all, a diagnosis that involves the whole family. Our volunteer board of directors, our writers and our presenters are all personally engaged with autism. It is this personal connection that fuels our passion for sharing, with you, what we know. We are dedicated to building bridges between research, practice and everyday life. It is at this center that engagement, true engagement, begins.

Here, families are the center. We offer education from experts,  how the latest research affects your family, and strategies that benefit your child. And we’re always looking for ways to grow. Explore with us the many possibilities of living with autism.

We’re here to help foster your child’s growth and development – and realize the joy of nurturing your child. Join our blog where we provide a place for everyone to learn and grow.

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Behavior, Autism and How to Manage It

For the past few months, I’ve been walking on eggshells around my son, desperately seeking ways to avoid setting him off while still ensuring that he “behaves.” It’s been tough to see old techniques useless in the face of his latest developmental stage. So I was hopeful that I’d walk away with some new strategies from Monday’s Managing Challenging Behavior in Kids with Autism class.

I didn’t. Instead I walked away with a whole new way of approaching our relationship.

The speaker, Samantha Moe, started by describing different behavior types:

  • Intense Brain Child
  • Downstairs Brian vs. Upstairs Brain
  • Little Scientist

and outlining “fire in the brain,” her way of explaining what is happening neurologically when our kids are in fight or flight mode. She then went on to describe common parenting landmines that trigger fight or flight mode. I saw how I fall into many of those. But that was just the first of eight pillars of parenting she presented:

  1. Avoid the hidden parenting landmines – tiggers that set your child off, amplifying anger, frustration and fighting
  2. Calm the fire – escalating behaviors are a sign of “fire in the brain,” where yelling or physical punishment makes things worse, not better
  3. Flood the brain with happy chemicals – kids grow accustomed to the chemical burst of drama and anxiety, shift their chemistry so they seek out calm and happy states
  4. Red light parenting – take back the reins in your household by helping your child understand that rules apply to them and listening/cooperating is required, not optional
  5. Discipline that motivates and energizes – traditional discipline, i.e. time-out, do not work well for children with autism. Instead their retaliation response is activated, and they become more demanding
  6. Defuse the emotional bomb – kids with autism have BIG emotions and tend to struggle with coping skills, tolerance and flexibility
  7. Develop daily routines – structured routines for morning, after-school and bedtime create a rhythm that is soothing, predictable and decreases urges to resist or negotiate
  8. Integrate – as you add new skills to your parenting toolbox you’ll find more support when your partner and other family members understand the approach

And as she moved through these pillars, I began to see, concretely, how what I do really matters. As Samantha said, ” Your child with autism is hyper vigilant, meaning they notice and absorb everything about you. So what you do matters, when you have a kid who is co-regulating off your mental/emotional state.”

Simply put, as I approach my child tense and awaiting a blowout, he responds to me in a state of tension and imminent meltdown.  And the light bulb went on. Instead of managing my child’s behavior with yet another effective-for-a-time technique, I needed to reshape our relationship.

I have shifted from wondering “what is wrong,” into seeking out the missing link. Once that’s identified, I am ready to be the external brain that pulls things together, the bridge between logic and emotion. Using heartfelt appreciation with both my children has immediately shifted the mood of our home closer to calm. And it’s allowed me to take a breath, regroup and look for the good in my child.

In that space, we all flourish.

Addressing Behavior Without Consequences

A Mother Jones article from the July/August edition really stuck with me. In it Katherine Reynolds Lewis asks, “What if Everything You Knew About Disciplining Kids Was Wrong?” It provides statistics that reinforce some of my worst parenting-with-autism fears, and it highlights a behavior approach that gives me hope and affirmation that we are on the right track in focusing on my son’s self-regulation and social communication skills. I know that’s an odd mix of emotions. But that’s parenting with autism.

Since I know we all need help with understanding our child’s behavior and how to respond to it, I’m sharing excerpts from the article and my thoughts on them.

In her article, Lewis paints a vivid picture of the way school discipline approaches, focused on rewards and punishments, “make bad behavior worse.” Often this leads to suspension and/or expulsion—key conduits into the school-to-prison pipeline. Citing government data, she says, “Children with learning and behavior disabilities are suspended at about twice the rate of their peers and incarcerated at nearly three times the rate of the overall youth population.” 

Take a moment to let that sink in.

Those are big fears for a parent living with autism. As my son entered kindergarten last fall, I worried that school staff would misunderstand his emotional outbursts and his tendency to borrow powerful language, like imitating others’ yelling, using the word “kill” with no idea of its meaning. I know how sticky labels like “disruptive” and “aggressive” can be and how teachers’ responses to my child would impact his engagement and identity as a learner.

While I had not envisioned suspensions or the school-to-prison pipeline, it was easy to see how schools would have to respond swiftly to threats and violent behavior. Thus far, I am encouraged that teachers recognize my child’s sweet, sensitive personality first and see his behaviors as evidence of his needs. I still wonder how the substitute teacher, the bus driver or the recess supervisor—those who don’t know my son’s social, sensory and communication challenges—might respond.

Weaving data and research into the stories of a third-grader, one elementary school and two juvenile detention or correctional facilities, Lewis introduces Dr. Ross Greene’s approach, Collaborative and Proactive Solutions (CPS). Greene’s central assertion is that “kids do well if they can” and that, rather than punishing children’s behavior, educators and parents should work with the child to figure out what caused the outburst and brainstorm possible strategies for what to do next time. As Lewis summarized, “The goal is to get to the root of the problem, not to discipline a kid for the way his brain is wired…after all, what good does it do to punish a child who literally hasn’t yet acquired the brain functions required to control his behavior?” Lewis’s article describes dramatic drops in disciplinary issues reported by schools using CPS.

Lewis described some ways that CPS required changes in workflow and classroom spaces at “Central School,” but it was clear that shifting mindsets was the most important. The school principal recalled, “Before CPS, ‘[teachers] spent a lot of time trying to diagnose children by talking to each other…Now we’re talking to the child and really believing the child when they say what the problems are.”

Staff were trained to build relationships with the most challenging kids and involve them in solving their problems. The article includes several examples of what this looks like in action. In one case, a boy is threateningly swinging a belt on the playground and his aid keeps her distance as she takes him on a walk while he vents and, eventually, cries. The two then make a plan to have the aid called when he feels angry next time. In other examples, teachers and students come up with strategies like taking a break in a quiet space, having a snack, or using lined paper and allowing drawing to start writing projects.

Greene’s connection-focused approach resonates with what my husband and I are learning and practicing with our son. Our first and beloved autism coach reminded us not to “climb anger mountain” with our child, but to be calm and to use a soft voice in addressing him during and after a meltdown.

Even now as we experience a new wave of frustration with getting dressed in the morning, I have noticed that raising my voice or naming a consequence for not complying makes my son physically and emotionally crumble. He is obviously struggling, maybe with motor planning or hyposensitivity, so a consequence makes accomplishing the task even harder. On especially difficult days, even using a timer or proposing a race is too much for him. Pretending he’s changing into a superhero to fight a villain (with real wrestling involved) seems to work lately.

While talking through the problem together has not yielded much so far, just focusing on what his behavior is telling me versus the fact that he’s not following instructions is a shift that reduces frustration and stalemates.   

Citing research that grounds the CPS approach, Lewis wrote, “Teachers who aim to control students’ behavior—rather than helping them control it themselves—undermine the very elements that are essential for motivation: autonomy, a sense of competence, and a capacity to relate to others” (citing Ed Deci, University of Rochester). The article goes on to reference research that indicates “children can actually reshape their brains when they learn and practice new skills,” illustrating how involving children in solving their own problems gives them practice and lays the groundwork for their long-term success.

This is the hugely hopeful part for me. Even these small opportunities to practice problem solving can build up to big changes. I am also encouraged that we are on the right track in what we’re doing as a family. The skills Greene’s approach is teaching—recognizing and regulating one’s emotions and thinking about and implementing strategies to solve one’s problems—merge well with Social Thinking and other strategies my family and our school teams have been using.

Together, the approaches touch on all skills in social-emotional learning (SEL), which is getting a lot of attention in education for playing a huge part in children’s life-long success. I am hopeful that this interest in SEL, along with approaches like Social Thinking and CPS, can open up space for children with autism to learn and grow alongside their “typical” peers while also broadening the world’s notion of what “typical” means.

For more ideas on how to understand and manage behavior with your child, join us for Managing Challenging Behaviors on January 25!

One Comment

  1. You are doing a great job, Beth!

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