As Autism Awareness Month winds down, I reflect on how much more my daughter, Hannah, has taught me than I could ever teach her.
Being on the front lines with Hannah’s autism has made me a better mother, teacher, and person. Only through a decade of experience with Hannah have I surmised that Hannah was hardwired to be who she was going to be all along. And, my passionate, determined, ambitious, and driven little girl is amazing just the way she is!
Embracing that acceptance has felt like a heavy weight lifted off my shoulders. While I realize all individuals with autism are different, here are the first 20 lessons I have learned by examining the world through my daughter’s unique lens.
Lesson #1: Hannah will be the first to tell you that she is different—not less or more.
I never kept Hannah’s diagnosis a secret from her. That would have been difficult with all of her therapies and doctors’ appointments. The knowledge of her diagnosis, complete with its strengths and challenges, has empowered her to own her “uniqueness.” She exudes pride. She has never shamed her autism or used it as an excuse. The lesson I’ve learned is that people living with a diagnosis of autism are who they are, unique and invaluable.
Lesson #2: Although autism plays a very significant role in Hannah’s daily interactions, it does not define her.
Without a doubt, autism has shaped Hannah’s personality and interests—the diagnostic criteria suits her to a T. However, Hannah plays tag at recess with friends, volunteers at our county’s Humane Society, and runs a fast mile in cross country. You won’t find those in the diagnostic criteria. I’ve learned not to make assumptions about what she or any person with autism is able to achieve.
Lesson #3: Not all individuals have the same sensory systems.
Hannah’s sensory systems used to challenge her beyond belief. I remember taking her into a loud, crowded room and hearing her scream, “It hurts! It hurts!” Now she has no problem with loud rooms, though specific, individual tones still set her off. Her tactile defensiveness is challenged with the change of clothing due to the change of seasons from summer to fall. Long sleeves scrape against her skin, and jeans are made of uncomfortable denim. Eating has always been an aversion due to texture and interoception challenges. I’ve learned to be more aware of and compassionate about how others literally feel the world.
Lesson #4: Some people think literally and in pictures.
Figurative language including idioms, metaphors, sarcasm, and hyperbole are difficult for her to follow. When she was younger, I bought a children’s book of everyday idioms to help her understand their suggested meanings. Her favorite has always been: Has the cat got your tongue? I’ve learned it’s okay to let go of metaphor in order to respect Hannah and others who benefit from straightforward communication.
Lesson #5: When I tell my daughter something is going to happen, it better happen or I’m going to wish it had.
Hannah has a very rigid schedule, which helps with successful transitions. This is crucial for her self-regulation. If a preferred activity has to be pulled from our schedule, her inflexibility causes great anxiety to all. It’s a life lesson for me to be absolutely certain I can pull off what I say I will, which has forced me to be clear and honest with everyone in my life.
Lesson #6: The ticket into many of our children’s worlds is their affinities.
As a toddler and young child, Hannah’s affinities were trains, space, shapes, numbers, and letters. Her affinity for the last three years has been cats. I used her affinities to gain her attention and then slowly made stretches and connections to other items or topics. I’ve seen how this is true of any person—identify their passions and affinities, and you can engage almost anyone in what you want to present or teach. It even helps make new friends, young or adult, to connect with that person’s greatest loves and enter their worlds.
Lesson #7: What I believe makes an individual happy doesn’t make Hannah happy.
My happy is not her happy. Hannah doesn’t need people to agree with her or to enjoy what she finds interesting. Her facial affect for happy isn’t as expressive as others’ either. Mirror neurons may play a role in this, but it’s helped me view all people with an open mind, knowing that they may not delight in the same things I delight in or laugh at the jokes I find funny. Understanding Hannah’s happiness has helped me love others more intimately.
Lesson #8: What is a challenge today may not be a challenge tomorrow.
Hang in there, Mom! Yes, because of Hannah’s proprioception and vestibular sensory challenges she experienced gravitational insecurity. She had a rough time learning to walk because she had no idea where her body was in space. She couldn’t feel the floor! But she learned how to walk—she even runs cross country! As soon as she was on her feet, I wanted her to begin to talk. Language was very difficult for her to motor plan—some days I wondered if she would ever learn to interact with spoken words. But she began using echolalia and her growth continued from there. Now she shares about her day and we chat about cats. She talks so effectively, we are currently working on filtering comments! I’ve learned to look back and see how far my child has come—and celebrate how much she’s emerged!
Lesson #9: Hannah doesn’t just learn by watching others.
She has to be taught everything she knows. Until I had my son, Connor, I never knew that kids naturally just pick-up how to get dressed, eat, and use the microwave. Hannah even had to be explicitly taught how to peel a banana. I’ve learned to teach even the simplest activities step-by-step, which has taught me to think through everyday actions I’d otherwise taken for granted and appreciate how hard some people have to work just to get out the door in the morning.
Lesson #10: It is imperative that I no longer discuss Hannah’s challenges in front of her.
Hannah has always been raised with therapists in and out of our home. She’s truly a therapy kid, so there has always been open communication between the therapists and myself in front of her. Not long ago, however, she adamantly requested that we not discuss areas needing improvement in front of her, and I respect her wishes. And, I understand. What person of any age would want to hear about challenges, struggles, and shortcomings all the time? Instead, we work hard to build her up by recognizing and building on her strengths.
Lesson #11: I not only need to tell Hannah to stop doing something, but, it’s also important to give her the reason why.
If Hannah is doing something inappropriate, chances are that she doesn’t know that it’s socially unacceptable. And, she has no idea why she should be embarrassed. Providing an explanation for redirection always helps when correcting social skills. Clear communication about the why behind things is helpful for any child and forces me to think about social norms I’ve come to value.
Lesson #12: It’s easier to just do tasks for Hannah; however, this will make her more dependent on me in the future.
Hannah must learn that she is going to have to do things on her own, and I have to remember that tasks don’t have to be done perfectly. I’ve posted lists all over our home to make her more independent. The steps to getting ready in the morning are located on the inside of her bathroom cabinet door, and the list of school items she needs to pack in the car is located in the laundry room by the garage door. These lists help Connor and me, as well, and remind me of the power of a checklist.
Lesson #13 Flapping (stimming) just meant that Hannah wanted to communicate.
I had to learn to listen when there were no words. Hannah wasn’t using the flapping as a ritualized behavior. She wanted and was excited to communicate, but she just couldn’t. Flapping was her communication. The lesson helped me connect with my daughter early on and read her nonverbal cues. I think it’s helped me continue to connect with her and, in a way, with others in life.
Lesson #14: I cannot give Hannah a list of things to complete.
Everything sounds garbled to her after the first item. When I finish the list, she has even forgotten the first item. Then, her anxiety and patience are challenged. Because she is upset with herself, she takes it out on me. Time order words help, but better yet, I’ve stuck Post-Its all over our home to write lists down when needed. This has taught me to avoid overload and keep it simple, a skill I’ve used as a teacher in the classroom and even with myself, so I don’t get overwhelmed by my own long to-do list.
Lesson #15: For every challenge that autism has given to Hannah, it has also given her a gift.
Hannah is baffled by the social interactions needed for team sports; however, she is a concert pianist. She has affinities she can’t avoid yet is a brilliant artist. Hannah has difficulty with anxiety but has an amazing memory. This lesson may be exaggerated with Hannah because her challenges seem so huge, but the principle is true for every person: we all have challenges that almost always come with a gift. I’ve seen it in my classroom…and myself.
Lesson #16: Behavior is a form of communication.
Hannah often becomes upset when her brother is praised for an action and she is not. She feels as if Connor’s successes are her failures. This is obviously not true, but it took some explaining to allow her brain to process and accept. In the classroom, Hannah becomes upset if I use an algorithm instead of a more conceptual model. She must see the mathematical process being used and at one-hundred percent. Hannah has taught me that our moods speak when we can’t find the words—true of everyone, not just someone with autism.
Lesson #17: Social pragmatics need to be taught directly.
Hannah has used scripted language since she was a very young age. It started with the words, “Hi! My name is Hannah! What is your name?” When I determined she couldn’t concentrate on what I was saying while looking me in the eyes, I learned that she could imagine a dot on the bridge of my nose on which to concentrate. This holds her to societal norms without risking positive social interactions.
Lesson #18: Receptive and expressive language don’t always correlate with aptitude.
While Hannah’s cognitive ability is far above average, her motor processing speed is delayed. She needs to be given time to process others’ words, and time to form her own responses. Wait time is essential. When she was little, I would ask her a question and forget all about it. Five minutes later she would come back with the answer. I’ve learned not to assume that someone is not sharp if they can’t answer instantly, which has been invaluable in the classroom.
Lesson #19: Mind-blindness inhibits Hannah’s ability to see things from a different viewpoint.
She has a difficult time understanding how others think, feel, and respond. And once a difference is explained to her, she doesn’t generalize it to apply to other situations. Hannah assumes that everyone shares her same way of thinking, has the same thoughts about a person, event or situation, and shares her same point of view. And, when they don’t, she emphatically believes they are at fault. Hannah has taught me that some challenges of autism result in a tone and attitude she cannot easily change. Understanding this has helped me be gentler with her and try to explain other viewpoints, which I must do over and over in each new scenario.
Lesson #20: I did nothing to cause Hannah’s autism.
Hannah has shown me that this was simply how she was created to be. She is a unique blessing—not someone that needs to be fixed. She was made to grace the world with her headstrong tenacity, one of autism’s gifts. Watching Hannah has helped me stop the blame I heaped on myself for small things that happened during my pregnancy, like the fall in the driveway, the occasional soda, or the newly-painted room I walked into one afternoon. Hannah, and all children and adults with autism, are who they are. What a wonderful lesson to be free from feeling like I was at fault!
Only by acting as a detective to uncover the basis of Hannah’s behaviors have I been able to encourage her beneficial actions and discourage adverse ones. These lessons have changed the way I parent her, especially, but also her brother. They’ve helped me teach with greater compassion, and advocate for people with greater clarity and insight.
I will continue to share more in a series running throughout the month of May. I hope my revelations will continue to raise an awareness of the needs of individuals with autism spectrum disorder.
I welcome any comments that you can share on lessons learned from individuals on the spectrum—just drop them in the comments below. You may even see them in a future post!
Take care,
Lori