As a parent of a 20-year-old son on the autism spectrum, I have plenty of personal experience with meltdowns. And I’ve learned that meltdowns are as difficult for the child as they are for the family.
When our children lose control, they are no longer themselves. Our wonderful, loving children are taken over by the anxiety, fear, and confusion of the fight-or-flight response. This response makes our kids try to get away from the problem or to fight it. Called hyper-arousal, this response is the consequence of heightened (or hyper) anxiety that makes a person feel attacked or threatened. And it can turn into a physical altercation that involves biting, hitting, kicking, and throwing things.
Our kids and adult children who live with autism have little control over the level of this response. We may say it’s over the top, but when our children are stuck in this mode, their only goal is to make it all stop or go away.
When youngsters on the spectrum have a meltdown, they can be picked up and taken away to a safe place. If you are in the grocery store when your child drops to the floor or runs, wrap him or her up in your arms and get to the car as fast as you can. This meltdown is controllable—unless you have other children you need to grab, too. And explaining what is going on can add to the chaos. I do not believe the time to educate the public about autism is during a meltdown, because parents need to focus on their child.
The public’s unknowing response to a meltdown can add to the stress level, too. When my son Jake was little, I was too aware of the general public during these tough situations. I took in all the disapproving looks and glances and “heard” all the unspoken comments about what a bad mom I was. There were times when strangers were very helpful. (They grabbed my bags or cleared the way for my hasty retreat.) But eventually, I learned that allowing outside responses to affect me was counterproductive to helping my son. I taught myself to no longer hear what other people said about my maternal skills. Now, I focus on the inner voice that tells me how to get my son out of the environment causing the hyper-arousal.
As our children age and grow—sometimes taller and bigger than we parents are—meltdowns can become scarier. Jake would experience horrible meltdowns around dental appointments and, sometimes, in the primary care doctor’s office. Some visits to the hospital (for primary and dental care) ended with security guards surrounding us to keep us all safe.
The first time this happened, I was very upset. Jake bit my arm (even though I give him as much physical space as safety allows) so my emotions got in the way. The second time, I stayed calm, and the meltdown didn’t last as long. From this experience, I learned that my mood and reaction can affect Jake’s response, so I work at maintaining a calm response.
When Jake lashes out at me, he always apologizes afterward. I know that he would never lash out unless something felt wrong to him. So, I strongly believe that punishing my son for having a meltdown—even when I get bitten—is not a proper response on my part.
Instead, once we move through the meltdown, I talk to Jake about more appropriate behavior. We have repeated conversations over many days about his behavior. The goal is to help soften his fight-or-flight response.
In summary, seeing our children act completely out of character is scary and upsetting. I think, as a parent, it helps to understand the lack of control our kids have over their bodies’ response to anxiety. During these difficult times, it’s helpful for me to ignore shameful or embarrassed thinking and to focus laser-like attention on my son and his needs.
It’s also helpful to desensitize our kids to the situations that make them anxious, such as the mall, grocery store, or a doctor’s office. In the case of doctor visits, I suggest working with your child’s medical providers to create a plan that eases your child’s anxiety. When we now visit Jake’s primary care doctor, we wait in an exam room instead of the waiting room.
Since we can’t foresee all the possible triggers, consider bringing a family member or friend who can help carry your bags or get the car while you handle your child. And continue to teach your child the appropriate behavior for an anxiety-creating situation.
I also recommend distraction. Bring books, the DVD player, or whatever else your child loses him- or herself in. And praise your child when he or she behaves well every step of the way. Excellent behavior is worthy of high praise.
Sun contributor Jen Nardo is a parent mentor and long-time Autism Delaware™ volunteer as well as a dedicated member of Autism Delaware’s newsletter committee.
This text was edited for consistency of language and message and appears in the summer 2018 issue of the Autism Delaware quarterly newsletter, The Sun.
Trust me when I say that I have had plenty of meltdowns. What stands out most is the excruciating and overwhelming physical and emotional pain that occurs every time. The meltdown experience is like the stages of a volcanic eruption: It begins with pressure beneath the surface. With the added pressure of outside circumstances, or stimuli, the chance of an eruption grows—until it blows.
Just before a meltdown occurs, observable signs are like the rising smoke and tremors of a volcano shortly before it erupts. These signs, to name a few, include heavy and fast breathing, body tightness (curling up, clenching, and so on), and change in tone and level of voice.
The stimuli most often include the following:
• unreasonably high expectations and my inability to meet them
• social exclusion
• out-of-routine or out-of-order activities
• unnecessary punishment or discipline
• unpleasant surprises
• misunderstandings, especially those that feel derogatory
• confusion and helplessness
When an eruption does occur, I experience many emotions, including rage, confusion, fear, paranoia, anxiety, sadness, self-deprecation, isolation, helplessness, and hopelessness—all at the same time!
Fortunately, my experience and life lessons have given me ways to decompress before I melt down—and even after. Here are the seven steps that I take to prevent and remedy meltdowns:
1. Cultivate a strong sense of self-awareness.
2. Prepare for the worst, and expect the unexpected.
3. Learn all that I can before I go somewhere new, and acclimate myself by becoming familiar
with the environment and the people I’ll be with.
4. Make sure that others know what to expect and how they can help (or hurt) me.
5. Devote myself to daily forgiveness and mindfulness practices.
6. Constantly monitor the emotional impact that the environment, activities, and other people
have on me.
7. Find the lessons to learn from each experience and the best measure to prevent and treat
Sun contributor Reese Eskridge is an autism advocate who’s currently employed as a food science technician at United Cocoa Processor in Newark, Del.
This text was edited for consistency of language and message and appears in the summer 2018 issue of the Autism Delaware™ quarterly newsletter, The Sun.
Two pieces of advice have been essential in my son Jacob’s progress to become as independent as possible. The first came from Steven E. Lindauer, PhD, the director of the Pediatric Developmental Disabilities Clinic at the Kennedy Krieger Institute: “Expect the same thing from both of your children. [Mackie has another child who’s neurotypical.] Even though Jacob has autism, children with autism do grow up and will become adults.”
The second piece of advice came from Gary S. Allison, MEd, EdD, assistant professor of special education at the University of Delaware’s School of Education: “Always be planning for five, ten years down the road. If you are teaching a skill when it’s needed, you are late.”
These pieces of advice have been directing Jacob’s roadmap to independence. He may never be able to live by himself, but he can still be independent.
My husband and I started teaching Jacob how to do chores that had clear endings, such as feeding the pets, putting seed and peanuts out for the birds and squirrels, folding towels, taking out the trash, and plugging in his AAC (augmentative and alternative communication) device. Since then, we have learned that what we teach needs to motivate Jacob, be functional, and produce immediate results. Jacob also needs to be able to relate to it. Most importantly, what we teach has to be useful in his adult life and make him less dependent on other adults.
Our first step was to find motivators besides motion and sensory activities, electronic games, the computer, TV, and food, because these could not deliver the reinforcement needed to impact Jacob. This issue plus Jacob’s lack of communication skills steered us to the Picture Exchange Communication System (PECS) and Pyramid’s token economy system. These tools not only motivated Jacob but also gave him a sense of control during intense learning sessions.
At his ABA (applied behavior analysis) sessions, Jacob was taught how to use a wall schedule to organize his day. This tool gave him receptive language, which is the ability to understand information.
Over the years, Jacob’s wall schedule has decreased in size to a portable three-inch binder. His revision of Pyramid’s token economy system has also evolved and is now used in combination with his portable binder to schedule every part of his life. We have relied on this system to teach basic skills (such as what a bathroom is and what we do in it). And it guides and reinforces Jacob as he completes his daily living skills and household responsibilities and enjoys leisure activities. We expect this tool to eventually become Jacob’s daily planner in which he will independently create, manipulate, and plan his own activities.
When first tackling household chores, we took baby steps. First, we chose a task that everyone shared equally, such as clearing the table after dinner. Everyone also collaborates in cleaning the kitchen, so our family modeled this behavior for Jacob. Each step of the task was represented by an icon on his portable schedule; each completed task earned a token.
Teaching a new skill begins with creating specific icons for each step of the task and then guiding Jacob through each step. As Jacob learns the skill, we replace the specific task icons with a generalized icon.
We slowly expanded his workload by combining activities for one icon while adding other responsibilities to the schedule. This step created greater expectation for each icon. Initially, each schedule was used to complete one task, but as Jacob learned the new task, each step was strung together with the next. Eventually, the task was condensed into one icon on a schedule.
For example, Jacob’s first morning schedule consisted of five tasks—brush teeth, shave, shower, brush hair, and get dressed—followed by a 10-minute break to reinforce the positive behavior. His morning routine also contained other responsibilities. At first, we had to create three separate schedules to complete all of Jacob’s morning tasks. As a result, Jacob’s morning routine took 1 1/2 hours. But over time, my son’s morning routine condensed into only 45 minutes. Jacob now completes 15 tasks, which are represented on his one schedule as “bathroom, bedroom, medicine, animal, and breakfast.”
In the future, my husband and I want Jacob to learn abstract concepts, such as time management and self-determination, but first, he needs to learn how he can impact his world and what his capabilities are as well as discover his choices for himself.
My husband and I believe that these goals are achievable through household chores because they help Jacob take care of his belongings and his environment.
Today, Jacob is learning to plan his own day by operating his portable schedule himself. To this end, we place two icons on his portable schedule. Each icon represents a task he must complete and may include current goals, new skills, or tasks that must be accomplished in a timely manner, such as getting to a doctor’s appointment on time.
We also give Jacob a choice of what else he would like to add to his schedule. He chooses from his lists of chores and leisure activities. This process allows him more control over his day and begins to teach him time management. Both pieces are necessary for developing self-determination.
Sun contributor Karen Mackie is a parent with a child on the autism spectrum and long-time autism advocate.
This text was edited for consistency of language and message and appears in the autumn 2018 issue of the Autism Delaware™ quarterly newsletter, The Sun.
Check out this recap of resources in our social media posts from October 2018 for National Bullying Awareness Month!
How to make a difference
October is National Bullying Prevention Month!
There are many ways you can help reduce bullying. Check out this resource from PACER for some ideas on what you can do to make a difference!
Be kind, take the pledge
Be supportive of others who have been bullied, be kind to others, accept other people’s differences, include those who are left out.
Click here to take the pledge!
Delaware’s Bullying Prevention Law
Are you aware of Delaware’s school bullying prevention law? Did you know Delaware offers a bullying hotline?
Check out this website for resources on how to get help if you or a loved one is affected by bullying
How you can help
For National Bullying Prevention Month, we want to know, what do YOU do to stop the bullying?
Check out what these people did, and tell us in the comments what you can do to help.
Bullying doesn’t stop when people leave high school. It happens at work too.
The Workplace Bullying Institute (WPI) has been working for 20 years “to research and understand, to educate the public and to teach prevention and correction of abusive conduct at work.”
Here’s how WPI defines workplace bullying:
“Workplace Bullying is repeated, health-harming mistreatment of one or more persons (the targets) by one or more perpetrators. It is abusive conduct that is:
• Threatening, humiliating, or intimidating, or
• Work interference — sabotage — which prevents work from getting done, or
• Verbal abuse
This definition was used in the 2014 WBI U.S. Workplace Bullying Survey. Its national prevalence was assessed.”
If you are being bullied at work, here are some tips to help you overcome it.
Bullying and Disabilities
According to PACER, statistics show that students with disabilities are more likely to be bullied. Their website provides a wealth of information to help. Learn about rights and policies, self-advocacy, peer advocacy, person first language, activities, and more.
We are so busy carting our children with autism spectrum disorder (ASD) to therapies, doctor appointments, school meetings, and more, that it’s easy to forget that some of the most important learning happens in the home. There, our children can practice the life skills needed to build independence.
When teaching household duties to our son Casey, my husband and I use the same strategies as when teaching any other skill:
• Start low, and go slow.
• Keep expectations reasonable.
• Make the activity rewarding.
• Be consistent in the implementation of procedures.
When Casey was five years old, we created a chore chart that was a simple grid decorated with his favorite characters. We started with two simple tasks we knew he could accomplish on his own: putting his dirty clothes in the laundry hamper at the end of the day and getting his own bath towel. The goal was to help Casey gain confidence while getting familiar with the chart.
At first, I had to remind him to use the chore chart, but pretty soon he took pride in remembering to check off the chores he’d done. We gave him tons of praise for being so responsible, which was a big motivator.
When an activity became a habit that Casey did without checking his chore chart, we replaced that task with a new one.
Casey is 10 years old now and is responsible for both personal chores (such as clearing his dinner plate from the table and plugging in his iPad) as well as household chores (such as washing laundry and dusting shelves).
In exchange for helping the household run smoothly, he gets a weekly allowance. Occasionally, he does larger tasks to earn extra money, such as cleaning the baseboards and helping to clean the outside stairs. I look forward to having him take over more chores when he is developmentally ready. These tasks will probably include washing the dishes, taking out the trash, and cleaning the bathroom. I can’t wait for that one!
To find a range of methods for teaching your child how to do household chores, I suggest going online or to a bookstore. Look for a method with suggested ages for developmentally appropriate tasks. For kids with autism, you may need to adjust your expectations and support, and some chores may not be possible or relevant.
You may also need to revise your reward system to one that rewards more frequently or whose rewards are more motivating. In the end, the extra effort is worth it because our kids will develop useful skills and gain confidence and pride in themselves as they become more capable and independent.
Sun contributor and parent Cory Gilden is researching human development and family studies as a graduate student at the University of Delaware’s college of education and human development. This text was edited for consistency of language and message and appears in the autumn 2018 issue of the Autism Delaware™ quarterly newsletter, The Sun.