By Rev. Helen Murgida, Ed.D. 

Welcome! This morning I will share my stories of working with neurodiverse students in the field of education and how this has shaped me as a compassionate caregiver. These reflections have helped me to articulate where I stand with self-compassion as a work in progress! 

The Autism Self-Advocacy Network has a poster that states, “Nothing about us, without us!” As a neurotypical, I will try to report my opinions and observations personally and carefully, but from an outsider looking in.  

Let’s start with a simple working definition for neurodiversity. This comes from Nick Walker, a neurodiversity activist: “Neurodiversity is the diversity of human brains and minds—the infinite variation in neurocognitive functioning within our species.” Like snowflakes, no two brains and no two minds are exactly alike. 

In his 2010 book, The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain, Dr. Thomas Armstrong states: “In the neurodiversity model, there is no ‘normal brain’ sitting in a vat somewhere in the Smithsonian or National Institute of Health to which all other brains must be compared.”  

The history of the neurodiversity movement is relatively new. The word “neurodiversity” was coined in the late 1990s by journalist Harvey Blume and Dr. Judy Singer, an Australian social scientist who is on the autism spectrum. She coined the term to describe conditions like autism, dyslexia, and ADHD. In her dissertation, which was not widely read, she called attention to the fact that many atypical forms of brain wiring also convey unusual skills and aptitudes.  

In the September 1998 issue of The Atlantic, in an article about the Wired magazine website, HotWired, Harvey Blume wrote, “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.” Cybernetics is the scientific study of how humans, animals, and machines control and communicate with each other. 

Neurodivergent, sometimes abbreviated as ND, includes more than autism. It just means having a brain that functions in ways that diverge significantly from the dominant societal standards of “normal.” As an umbrella term, it incorporates mood disorders, anxiety disorders, dissociative disorders, psychotic disorders, personality disorders, neurodevelopmental disorders, and eating disorders. If you are not neurodivergent, you are neurotypical; that means not having a diagnosis of autism and considered “normal” by the general population. We need a cheat sheet for the terms, but stay with me!  

The growth of the neurodiversity movement was largely internet-based and supported by the autistic community and their advocates. As a social justice movement, it seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent. In the field of special education, the movement helped assure that students make the most of their native strengths and special interests, rather than trying to normalize their behavior.  

The rainbow-colored infinity symbol that I shared with the children and the story from The Junkyard Wonders represents the neurological diversity of the autism spectrum, as well as the greater neurodiversity movement. Blogger and activist Cara Liebowitz describes herself: “I’m multiply neurodivergent because I have cerebral palsy, generalized anxiety disorder and OCD. All of these conditions affect how my brain and mind function.” She is not autistic, nor were the students in The Junkyard Wonders.  

In the 2015 book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity, Steve Silberman chronicles the history of neurodivergent conditions, including autism, which was described by Dr. Hans Asperger in Nazi-occupied Vienna and Dr. Leo Kanner in Baltimore in the 1930s and 1940s. Asperger defined a broad spectrum of children who were socially awkward. Some had extraordinary abilities and a “fascination with rules, laws and schedules.” Kanner, on the other hand, described children who were more disabled. Kanner’s suggestion that the condition was activated by bad parenting made autism a source of stigma for parents and led to decades of work that attempted to “cure” autism rather than develop ways for families, the educational system, and society to adapt to it. 

My Story 

C.S. Lewis says: “Experience: the most brutal of teachers. But you learn, my God do you learn.”  

All life stories shape our ability to practice self-compassion. This part of my life story begins in 1966 as a teacher at the Cotting School in Boston, then called the “Industrial School for Crippled Children.” When founded in 1892, the school was called the “Industrial School for Crippled and Deformed Children.” 

The children at the Cotting School were not described as “neurodivergent”—the label did not exist. They had polio, cerebral palsy, spina bifida,muscular dystrophy, and other birth defects. What I learned in retrospect was that I was not only their teacher but also their caregiver.  

Being in a wheelchair, using a walker, using braces and crutches, and having prostheses were all obvious limitations—nothing was hidden. We did not have conversations about the deep emotional pain of living with a physical handicap. I was “compassionate.”  

Yes, I felt their pain and suffering. However, I think that I also felt “pity”—for me, very different from compassion. A tough word. Pity expresses a negative evaluation of the bad situation of others. People don’t want to be pitied; I don’t want to be pitied!  

In 1972, I retired from the Cotting School to start my family. A college friend and I founded the Pentucket Workshop Preschool in Georgetown. She was a social worker and I was a special education teacher.  

From the very beginning, parents of children who were “different” gravitated to our program. We were an “integrated preschool” before that term existed. Chapter 766 had just been passed in Massachusetts in 1972. I learned that many of our students had hidden—not physically obvious—disabilities such as Asperger Syndrome and high-functioning autism. The children ranged in age from 3 to 5, so many were still  undiagnosed. Many of them were not toilet trained! 

The teachers at Pentucket were compassionate caregivers. They were patient, organized, cheerful, creative, and intuitive. We laughed a lot! We supported each other—we became the Pentucket “tribe.” You must laugh if you’re covered with orange paint, or have a child throw up on you, or cry for 20 minutes because they can’t have the green straw. We learned that if a lesson is falling apart, let it go—go to the  playground— even if it is raining, especially if it is raining!  

Children and parents were treated with dignity and respect. Children with communication problems cannot/will not express their feelings, so they act them out. When safe and secure, they used words which sometimes required interpreting, but if we got their intent wrong, they would let us know. We heard about their mean siblings, how they missed their deceased grandparents, and really wanted a pet! 

As Gary Zukav, the spiritual teacher and author of The Seat of the Soul says, “Caregivers attract caregivers and live in a community of love. They are energized by their caring, fulfilled, and they love life.” 

I also worked as an administrator at a day school program at McLean Hospital with multiply neurodivergent students. The students had autism spectrum and related disorders and focused on intensive social-pragmatic learning and natural consequences to actions. They came feeling unsuccessful and were often diagnosed with anxiety and depression. A highly structured and predictable environment was key for them to be able to access learning as they were taught strategies to regulate their emotions. I learned that the intensity of caregiving by their parents was heroic.  

My current job is working as a consultant for the Office of Approved Special Education Schools (OASES) within the Massachusetts Department of Elementary and Secondary Education. Our task is to ensure that all students are safe, educated by qualified staff, and receive specialized instruction to meet their individual needs, and to see that state and federal special education and civil rights requirements are implemented. OASES schools range from schools for the blind, to schools for high-functioning Asperger students, to secure residential schools for very troubled youth.  

As Leo Buscaglia says, “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, a compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  

Self-Compassion for Caregivers 

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” —Rosalynn Carter 

Many here today, if asked if you are caregivers, would say, “No, I’m just doing my job! I’m fine, thanks for asking!” Self-identification as a caregiver is an essential first step in overcoming the enormous responsibilities your role entails. You are caregivers for adults or children with disabilities, people with mental illness, people who are chronically ill, older people who have difficulty coping with daily living, and people who are terminally ill or suffering from a life-limiting disease.  

There is a difference between short-term and long-term caregiving. For example, when I  officiate at a memorial service, I am intensely involved in the sacred task of caring for the needs of the grieving family as they say goodbye to their family member with dignity and respect, within a religious or nonreligious framework. This is often complicated due to estrangement, ill will, anger, or resentment. After interment, I do not have contact with the families. I have one shot at “doing it right.” We all have experienced brief encounters that have a long-lasting effect on us, and conversely, think of all the times that you have made a positive difference.  

Mufti Ismael Menk tells us, “Don’t underestimate the endless ripple effect of any act of goodness or kindness, no matter how small it is. Sooner or later, it will make its way back to you. Remember, what goes around, comes around. Perhaps not immediately but trust the Almighty to reward you eventually.” 

Long-term caregiving is different. When I was caregiver for my late husband Frank, I was blessed with friends and family members who not only asked me what I needed but gave me what I didn’t even know I needed—showing up, calling, texting, sending cards, prayers, reaching out to my sons, offering help driving to dialysis, or just sharing a cup of coffee. 

Charlie Gilkey is a speaker and author of Start Finishing: How to Go from Idea to Done. I believe his audience is entrepreneurs with new ideas who are struggling to have them come to fruition. He had a serious illness and wrote the article “The Foundation of True Self-Care is Self-Compassion” during his extended recovery. He wrote, “We sometimes use ‘self-care’ as a proxy for ‘self-compassion’ but they’re different concepts.” He goes on to explain that “self-compassion is regarding yourself compassionately. Self-care, by contrast, is treating yourself compassionately. The two terms sound interchangeable, but they contain a thinking versus doing distinction.” 

These are Gilkey’s suggestions for practicing self-compassion that worked for him: 

1. Replace. Imagine someone you care deeply about, such as your 4-year-old son, or best friend. Now insert that individual into whatever hardship you are dealing with.
2. Think. Ask what you would expect of and from that person if they were in the situation you are in.
3. Encourage. Based on your answers, consider what you would encourage that person to do and what you would do for them if you could.
4. Return. Put yourself back in the situation.
5. Rebut. You’re probably hearing a bunch of “yeah, buts” right now. Rebut all that hard head trash by thinking what you would say to a friend with a case of them. It’ll weaken the power of the “yeah, buts.”
6. Act. Take on the things brainstormed in step 3. 

Self-Compassion is challenged in instances of perceived inadequacy, failure, or general  suffering. It is hard to be warm towards oneself when encountering pain and personal  shortcomings. There is an old aphorism: “True justice is paying only once for each mistake. Let go of perceived mistakes, flaws, inadequacies from our past. If you’ve made a mistake, figure out why, own it and move on.” 

Dr. Kristin Neff, a psychologist who studies moral and self-concept development and is a Buddhist in the Insight Meditation tradition, wrote the book, Self-Compassion: The Proven Power of Being Kind to Yourself, and with Dr. Chris Germer developed a training program called Mindful Self-Compassion. 

Then she had a son who was diagnosed with autism at the age of three. As part of the autism community, she states that a lot of autism parents are in “problem-solving mode” and don’t have time to acknowledge the pain—the grief. She references Khalil Gibran: “The deeper that sorrow carves into your being, the more joy you can contain.” Parenting an autistic child is intense in both the grief and the joy it brings. She continues: “I think autism breaks open your heart. The big lesson in life is that you cannot control things, and you have to be open to what life brings you.” 

The following is taken from a blog by Jodi Durr at meaningfulmama.com entitled “Unless you Are Raising A Special Needs Child, You Don’t Understand”: 

Unless you are raising a special needs child, you don’t understand. The daily struggle is real. Try and imagine the work of exhibiting patience, discipline and love while a child presses into you with challenging behavior day after day. 

Unless you are raising a special needs child, you also don’t understand the determination these men and women show. It takes perseverance to choose to show up every day, and they do! There is a lot of effort to choose kindness when you are filled with anger, joy when you are feeling defeated, and hope when you can’t see the light at the end of the tunnel. I am a mom (or dad or grandparent). I will persist. That is just what we do. Defeat isn’t an option. Hope abounds.   

Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. 

Unless you are raising a child with special needs, you don’t know what it is like to yearn for normal. 

Unless you are raising a child with special needs, you don’t know what it’s like to try everything. 

There were close to 300 responses to this post— 99% from women who were caregivers, not just for children, but for husbands, mothers, fathers, friends. It was uplifting to read their stories. They acknowledged feelings of powerlessness in their situation and the need for self-compassion and that they were getting help just by having a forum where they were listened to. This is what they yearned for—what is helpful for them:  

• awareness and understanding of what their lives are like
• greater transparency to reduce stigma
• ongoing connection to others in the same situation
• less judgement from schools, family, friends, and social service organizations
• less judgement masked as well-meaning advice
• being supported and loved
• showing flexibility
• volunteering to sit with a child or adult
• bringing meals
• being loved and appreciated

The responders continue: please, do not say to caregivers:  

• “I don’t know how you do it.”
• “Everything happens for a reason.”
• “This is God’s plan.”
• “God only gives you what he knows you can handle!”

We are all works-in-progress with self-compassion. Like many of you, I find it difficult to ask for help. Let’s continue to figure out how to be there for each other. Let’s build on the bonds of compassion that already exist at the First Religious Society. Let’s acknowledge our neurodiversity. As Wavy Gravy said, “We’re all bozos on the bus, so might as well sit back and enjoy the ride!”