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.
When I started thinking about how I was going to get around on my own in my life, I considered this interesting fact: Not driving inhibits the ability to go from place to place. People who don’t drive miss developmental, educational, and recreational activities outside the home and school. Developmental gaps can result as well as the loss of self-confidence in the long term. Plus, it’s inconvenient when I cannot get where I want to go and arrive when I want to arrive. And being able to do this is what it means to be independent, doesn’t it?
The following seven-step method helped me tackle some of the most pressing issues facing drivers on the autism spectrum.
Step 1: Decide how you are going to get around.
For many people with autism spectrum disorder (ASD), driving is a major challenge with many risks involving basic decision-making and interpreting nonverbal cues. Every moment behind the wheel can impact the quality of an autistic person’s life and ability to reach a destination.
I began by asking this question: “Am I ready to tackle driving?” The best thing to do is to ask insightful questions like this. There are plenty of other questions to ask as well. Many have to do with life skills that can be learned.
If you decide you are not ready to drive, consider the other possible modes of transportation and experiment with them. Ask yourself if the mode of transportation does its job well. Or does your bus driver have a disrespectful attitude? Is the taxi driver notorious for tardiness and losing his way? If your driver is a friend or family member, does he or she tend to get distracted?
Try a different means of transportation until you find one that is right for you. Use this as your default mode of transportation.
If you have decided to learn how to drive, read on!
Step 2: Overcome your fear.
Did you realize that self-imposed restrictions limit your independence? And refusing to practice a life skill actually fosters anxiety because every time you dwell on what’s unfamiliar, you become more nervous. In turn, you’ll avoid the driving practice necessary to expand your previously learned skills and current knowledge.
To face your fear, try this five-step approach:
Step 1—Acknowledge the fear.
Step 2—Use critical thinking by asking “Why?” five times to get down to the root dilemma.
Step 3—Break the dilemma down into simple parts, and devote time to addressing the possibilities related to each part.
Step 4—Visualize what you want to accomplish, and use it to break the barriers caused by your fear.
Step 5—Make a habit of breaking these barriers—and the fear will disappear.
Step 3: Assess and build your skills.
Know that driving is a privilege that you must earn. Determine all of the skills you need, from tackling a wide variety of driving situations to taking the road test. Then, assess your ability to handle these situations by looking at your skills in challenging activities that do not require driving.
Note your strengths and weaknesses. Acknowledge your strong points, and establish the relationships you need to turn your weaknesses into strong points. Plan, implement, evaluate, and modify your strategies for strengthening your skills.
Maintain your skills through consistent and diverse driving sessions.
Step 4: Learn by observing.
Watch driving videos that tackle a driving situation from multiple viewpoints. Be sure to account for the emotional experiences of the driver and what is most likely to occur as a result.
Ride with another driver, and observe as many facets of the driver’s experience as possible. Focus on one facet at a time. Repeat sessions when necessary.
Then, ask a driver to let you drive to test your abilities. Strengthen what were once weak points in your driving through repetition. Gradually look for more of your weak points and address each of them.
Step 5: Know the rules of the road.
Understand the rules that apply to driving, and follow them. Constantly ask yourself “What is the best thing to do in this instance to keep myself and others safe?”
Step 6: Learn the language of the road.
Learn the common nonverbal cues. For example, what does it mean when a driver flashes the vehicle’s lights? Or when someone waves at you, are you being given the right of way? If you understand what these cues may mean, you will know how to respond responsibly.
Step 7: Celebrate the milestones.
The act of driving means independence to me: I go to the gym by myself, visit friends on game night, work to earn that sweet paycheck every month, and drive to the beach for a day of relaxation.
When you get your driver’s license, acknowledge that you made a life-changing decision and that this deserves celebrating.
Sun contributor Reese Eskridge drives himself to and from work as a food science technician at United Cocoa Processor in Newark, Del., five days a week.
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.
Shakespeare and Showering: Skills for High School
Tom Hays, PhD, educational director of a private high school, said parents are surprised when he says that adaptive skills are more important than some basic high school information, such as Shakespeare or the Krebs Cycle. Dr. Hays works at Franklin Academy, a day and boarding school for students with autism spectrum disorder [ASD] and nonverbal learning disability school in East Haddam, Conn. Franklin includes instruction in adaptive and social skills, along with the typical college preparatory courses.
“We teach the skills you have to have to get along with others, take care of yourself, and self-advocacy,” Dr. Hays said. Instruction may range from daily living skills, such as personal hygiene, to more complex dating and relationship skills, he said.
“I have kids with a 145 IQ who walk into my classroom, and they stink,” he said. They may think taking a shower means standing under a stream of water for a few seconds and nothing more, he said. Fortunately, Franklin has a curriculum that teaches how they should bathe by breaking it down into concrete steps, such as how to use soap and how long to stand under the water.
“For our population, you have to do really explicit teaching,” Dr. Hays said. One cannot assume that children on the spectrum “will pick up a skill by osmosis or will be able to imitate the skill after watching someone once. What we find is that with more nuanced and sophisticated skills, students have to be taught very explicitly and sequentially how to perform the skill.”
Franklin even includes instruction on the complexities of social and relationship skills. “Dating is a big issue for our kids. They are clueless when it comes to dating: What does it mean to be in a relationship? What are the norms or conventions in terms of social expectations? We have to explicitly teach those skills.”…
What you may not learn in high school
There are certain skills that these kids are not given through the high school, and it’s difficult to transition from high school to independent living with this huge section of training missing.
Jennifer Cuff understands the need to teach and provide opportunities for practicing adaptive skills. She is both the mother of a daughter with Asperger’s syndrome [now known as autism spectrum disorder] and also an adult service coordinator for a disability-services agency in Coeur d’Alene, Idaho.
“There are certain skills that these kids are not given through the high school, and it’s difficult to transition from high school to independent living with this huge section of training missing,” said Mrs. Cuff, a member of the Simons Simplex Collection autism research project.
Like many parents, she taught her daughter, Elizabeth, 20, skills such as clipping coupons, shopping, preparing meals, taking the bus to work, and taking care of the family cat. She wanted to give her daughter a chance to practice those skills without constant supervision. So she left Liz home alone for a week while the rest of the family moved into a recreational vehicle parked just 15 minutes away. Liz’s grandmother lives around the corner, so a relative could reach [Liz] quickly if a problem arose. But none did. Mrs. Cuff checked on Liz during the week, and she was fine.
Ultimately, when one assesses the so-called “functioning level” of a person with autism, his or her adaptive skills may be far more important than his [or her] academic achievements. [Autism expert] Dr. Peter Gerhardt said he has had clients with above average IQs who “spend all day in their parents’ basements playing video games,” don’t bathe, and don’t interact with others. He also has had clients with intellectual disability who have jobs in the community. “In that scenario, the guy with the lower IQ is the higher functioning guy,” he said.
That is why he emphasizes the importance of teaching adaptive skills to everyone with ASD.
This partial reprint is reproduced with permission of Kennedy Krieger Institute, Baltimore, Md.
The entire article is entitled Daily Living Skills: A Key to Independence for People with Autism (© 2007–2018 Kennedy Krieger Institute)
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.