The Next 20 Lessons My Daughter with Autism Has Taught Me
Last month I published The First 20 Lessons My Daughter with Autism Has Taught Me.
I’ve learned far more than a mere 20 lessons as I’ve parented my daughter who has autism spectrum disorder, so I expanded the list.
Last month Hannah read every one of the lessons I listed and recognized them all as true, and she was proud to be acknowledged for teaching her mother a thing or two (or twenty). I’m confident that she’ll vouch for the credibility of the next 20 lessons, as well.
While all individuals with autism are different, maybe you’ll recognize a thing or two from the list of the next 20 lessons I’ve learned by examining the world through my daughter’s unique lens.
Lesson #21: The frontal lobe of the brain controls a set of mental skills that help to get things done—Executive Function.
Executive function helps to manage time, pay attention, switch focus, plan and organize, remember details, avoid saying or doing the wrong things, do things based on your experience, and multitask. Hannah struggles with many of these, which hinders her independence. I’ve learned to provide instruction and tools such as a Time Timer (to help her see how much time is left before the next activity), an electronic calendar, and an organizational system to help Hannah and my students in the classroom. A willing peer buddy can also be helpful beyond words.
Lesson #22: Stretching a child on the spectrum to appreciate new experiences takes baby steps. If stretched too far too quickly, they will break.
I’ve learned that expecting Hannah to accomplish new tasks takes intervention and time. Setting expectations too high makes her feel defeated and discourages self-confidence. I don’t want her to feel as if she’s doing something wrong or isn’t good enough.
Lesson #23: It’s often difficult for children with autism to navigate friendships.
We’ve gone from scripted language to play therapy. Then from play therapy to friendship groups with the school’s guidance counselor. Many of my friends’ kids then became the ones she could count on for acceptance. And now Hannah feels as if she can associate with various cliques of kids at school. She has a lot of friends, though at times I’m not sure she recognizes this. I’ve learned that social skills must be taught and that a parent must intervene to make this happen or it simply won’t. The Asperkid’s (Secret) Book of Social Rules by Jennifer O’Toole is a fantastic resource!
Lesson #24: Routines and schedules play an important role for people with autism by helping create stability and order.
Everyday hustle and bustle that most people find normal can feel like an overwhelming sensation of crowds, noises, and lights to those on the spectrum. As a child reacts, sometimes dramatically, the parents face incredible stress. Routine schedules provide calmer transitions. People with autism are quick to learn routines and are motivated to repeat them. I’ve learned that combining tasks into routine experiences and defining a schedule greatly decreases stress for the entire family unit.
Lesson #25: A sensory retreat is crucial. It assists in self-regulation by helping a child on the spectrum recover from “fight or flight” and return to a ready state.
Sometimes a five-minute sensory break from environmental triggers is all a child with autism needs to self-regulate. The retreat is a calm, quiet, therapeutic escape with tools to recover from or avoid a sensory meltdown. I’ve learned these safe places are especially useful on vacations and at holidays. My classroom contains a sensory corner complete with bean bags, sensory fidgets, lava lamps, and sensory water beads.
Lesson #26: Diagnosed with autism or not, children shouldn’t always be rescued from challenges. They should be taught how to face challenges with resilience.
Although we want to, we will not always be there to help our children problem-solve in difficult situations. I’ve learned that allowing Hannah and my students to struggle with a situation gives them experience working through frustration. Saving our children doesn’t equip them with the perseverance they will need.
Lesson #27: A child with autism may look like they’re ignoring you, but they’re actually waiting for you to enter their world.
What particular interests does the child with autism have? Engage them by using those interests, even if you’re not particularly interested in them. I’ve learned that people with autism focus on what they, not necessarily others, find interesting. It sometimes helps to say their name before engaging in conversation. Parents, therapists, and teachers must enter the child’s world and slowly pull them into ours.
Lesson #28: Imitating the movements of others, like waving, is very difficult for children on the spectrum.
Mirror neurons have been found to be particularly weak in individuals with autism. Therefore, it’s difficult for children with autism to imitate movements. Hannah used to always wave with her palm facing her body—in other words, she was waving at herself. Proprioception challenges further complicate mirroring. If a person doesn’t recognize where their body is in space, it’s hard to replicate movements. I’ve found that specific gestures, facial expressions, and tone need to be taught and defined.
Lesson #29: Swinging, jumping, spinning, and rocking provide vestibular input to the brain and allow children with autism to organize their bodies and regulate their sensory systems.
These are all examples of repetitive motor behaviors. When a child elicits one of these actions, they are activating their vestibular system. These actions may automatically make the child feel good. However, many children with autism seek these sensations due to feeling under-stimulated. I’ve learned to allow these behaviors—even encourage them—as long as no one else is being distracted and the behaviors aren’t prolonged.
Lesson #30: Lining up toys, crayons, or cards provides order, comfort, and a sense of control for children on the spectrum.
When children with autism can have control over something, they need that behavior to remain as constant as a safe place. Many children without autism also line up items. The difference is that those children don’t normally become upset if the order of the items is switched around. I’ve learned that not only do many children with autism line up items, but there is most often an inherent reasoning within the order.
Lesson #31: Water (aquatic therapy) is a medium that provides ideal conditions to enhance language, decrease stimming, and increase eye contact for those with autism.
The benefits of water therapy are numerous. Water reduces body weight by 90 percent, which helps to relax muscles. By engaging in water activities, children are able to gauge their body boundaries much better. The hydrostatic pressure allows children to better tolerate touch immediately following therapy. I’ve learned that many children with autism also communicate and maintain eye contact more during and immediately following sessions. Give aquatic therapy a try!
Lesson #32: Chronological age and developmental age will most likely not be in sync for kids on the autism spectrum.
Considering that autism is a neurological developmental disorder and one of the major red flags is that children don’t hit their developmental milestones on time, it’s easy to see that a child can be five years old chronologically but have the mentality of a two-year-old. I’ve learned that this anomaly is observable while children play board games (turn-taking), discuss preferred interests (My Little Pony compared to mainstream teen culture), and self-care. So, if working on social pragmatics, you might want the child with autism to develop a friendship with a younger child.
Lesson #33: Children with autism are heavily dependent on cues and prompts in order to move on to the next task—even when they’re able to identify the next task.
In The Reason I Jump, Naoki Higashida, a thirteen-year-old boy with autism, says, “People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we actually won’t start drinking until someone’s said, ‘Enjoy’ or ‘Go ahead and drink then.'” Higashida admits that it doesn’t make sense because he knows what to do, but says it can be terrifying to do it without the prompt. I’ve learned not to give up on Hannah getting through this terrifying phase because she wants to free herself from the chains that hold her to waiting for the prompt. Her most arduous tasks to accomplish without cue are getting out of the car and eating.
Lesson #34: Children on the spectrum tend to see the parts of an image or idea (gestalt) before the entire image or idea materializes.
People with autism tend to see the details of an object first and then gradually the entire image comes into focus. A vivid color or an interesting shape within an image may capture their attention and concentration. Hannah is especially drawn to shapes contained within a whole. When she was younger, we would pass homes while walking through our neighborhood, and she would call out the names of certain shapes comprising the homes. It took time before I was able to figure out her intention, as she never pointed (another hallmark of autism). I’ve also learned that children with autism may become fixated on certain parts of a conversation and miss the big gestalt intended.
Lesson #35: Those with autism tend to have an innate connection with nature, which provides a peaceful effect.
Hannah’s demeanor is calmer and more peaceful when she’s able to appreciate the great outdoors with all of its sights and sounds. John Elder Robison, an autist and author of Look Me in the Eye, said, “I probably feel more at home in the woods than anywhere else.” Hannah says that nature is logical and doesn’t involve emotions—her idea of tranquility. Temple Grandin (professor of animal science and an autist) has suggested that people with autism have an innate connection with animals. I’ve learned that nature is another venue in which Hannah and others with autism feel great comfort and peace.
Lesson #36: Society has general rules that others learn from observation. This hidden curriculum must be directly taught to children on the spectrum.
The brains of children with autism are not automatically wired to pick up, understand, and use the social milieu around them. Hannah used to interrupt others in the middle of a conversation and ask questions endlessly in class. I’ve learned that the hidden curriculum must be defined and explained to my daughter. In other words, children with autism will follow specific social norms if the rules are taught and reinforced.
Lesson #37: Acting as someone that you aren’t is the highest form of self-harm and is exhausting. Allow your kids to be themselves!
Naturally, as parents, we can all picture the kids we think our children should befriend. Often they are the exact same type of friends we chose when we were younger. Even if we, too, have autism, our children are not us. Hannah feels more comfortable being around kids whose interests are similar or kids that are younger. I’ve also explained to her that you can have different friends outside of school than you do at school. I’ve learned that trying to selectively choose whom Hannah befriends leaves her feeling as if her interests aren’t important and that she should fit in when she does not. It emotionally exhausts her. We don’t want that for our kids.
Lesson #38: Individuals with autism are perfectly capable of feeling sympathy for others; however, cognitive empathy (inferring mental state) is more of a struggle.
Children with autism are able to show feelings of compassion (sympathy) to others especially in times of sorrow. They are also more than capable of showing emotional/affective empathy (empathic concern) for others. However, I’ve learned that cognitive empathy is not a collective strong point. It is extremely difficult for children with autism to infer another person’s point of view in a situation. Liane Kupferberg Carter, author of Ketchup is My Favorite Vegetable: A Family Grows Up with Autism, said, “While it’s true that autistic people often have a harder time reading social cues, it is quite a leap—and a dangerous one—to assume that a person’s inability to interpret non-verbal cues means he doesn’t care and has no empathy.”
Lesson #39: Self-advocacy for individuals with autism means they must expect people to treat them with dignity and respect while also requesting what is needed in order to succeed.
Self-advocacy starts with respecting oneself. If a child with autism, or anyone for that matter, doesn’t respect herself and believes she deserves to be treated unfairly, then others probably won’t go to the trouble of respecting her or treating her fairly. I’ve learned that by identifying Hannah’s strengths and weaknesses, then determining specific tools to be used for accommodations and modifications, she has a stronger voice to ask for what she needs. The hope is that one day she’ll be able to rely less on those aids.
Lesson #40: No doctor can make a definite prognosis as to the limits that individuals with autism can achieve. Hope and early intervention are the best medicine.
In 2007, at the early age of two, Hannah’s neurologist gave a grim prognosis for her future. But many other professionals believed she could and would gain more skills. Through early intervention, neurological pathways were rewired resulting in positive development. I’ve learned that with as much advancement that has occurred in the last decade with autism, it still remains a mysterious anomaly—we’re still not even sure about its cause. Until we know more, we must try everything we can to bring our kids to their greatest potential.
I hope my revelations continue to raise an awareness of the needs of individuals with autism spectrum disorder. The more we familiarize ourselves with some of the challenges a person with autism faces, the better we can ensure our loved ones get what they need! Be your child’s champion by understanding their actions, which sometimes speak louder than their words.
I welcome any comments that you can share on lessons learned from individuals on the spectrum—just find the blog tab across the top of this page and comment after this post.