No matter the color of your skin, how you dress, how or if you pray, the language you speak, we are one human family. Now more than ever we need bridges not walls for our children and our families.
This complete resource is available now through the Arc of Philadelphia.
”Preparing Neurodiverse youth for the workplace” is a new educational resource now available through the Arc of Philadelphia. This resource was developed with the support of a grant from the Pennsylvania Department of Education, Bureau of Special Education (BSE)/ PaTTAN in collaboration with and the Pennsylvania Office of Vocational Rehabilitation (OVR). These materials share practical strategies and lessons learned through the “Neurodiversity in the Workplace” initiative. The goal is to better prepare neurodiverse people for rewarding and meaningful lives. You are urged to use these resources at no charge. Customize, improve, and redistribute these resources. You and your organization must not charge or sell the materials, and you must recognize the source as the Arc of Philadelphia. You are urged to participate in the conversation about improving resources for neurodiverse people. Listen to a brief introduction by Drs. Stephen Shore and Robert Naseef, lead consultants on the project.
His 5-year-old boy was not interested in playing catch with his father. Instead, he kept placing a marble at the top of his marble run and watching it go round and round to the bottom for an hour straight. His father watched with a knot in his stomach. Then he realized his son was joyful. As he told his story to the 7 other men in the room, he reflected that he couldn’t remember ever being joyful for an hour.
Although this awareness arose through the experience of having a child on the autism spectrum, experiences like this can occur for parents of typically developing children. According to Rick Hanson, Ph.D. in Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence, “The brain is like Velcro for negative experience and Teflon for positive ones.”
The human brain has evolved of necessity to be constantly scanning for threats to protect us. The downside is that the brain loses sight of the big picture. We spend most of our time worrying about things that might go wrong in the future and ruminating about things that have already happened. Hanson states that the way to “hardwire happiness” into the brain is to take in the good — being present to life’s tiny, joyful moments.
By observing the positive experiences with the greatest personal impact, we can train our brains to keep our eyes open for happiness and contentment and cultivate a sense of wonder. Although all parents face challenges, parents of children with autism and other special needs often experience more anxiety, depression, guilt, and shame.
Getting in tune or in sync with your child starts with just being there and seeing the world through your child’s eyes. The child with special needs is, first of all, a child. It is through everyday routine activities that children learn and develop. Just being there and learning to enjoy your child again is the starting point for getting back in sync. It starts with taking turns, an essential relationship skill.
In Everyday Blessings: The Inner Work of Mindful Parenting, Myla and Jon Kabat-Zinn describe the deep connection that is “available to us virtually in any moment, even in the more difficult ones, if we stay attuned both to our children and to this moment.” (p.2) There can be moments of pure bliss, such as a child’s first steps or first words, or moments of intense frustration and pain, such as during a meltdown or aggressive behavior. These difficult moments have the possibility of opening our minds and hearts to new learning and growth just as the father who realized that his son was blissfully playing with the marble run.
Opening to inner experience is vital for parents for we find happiness as a passing state that comes and goes as we experience everything else. We cannot chase moments of delight any more than we can hold onto a rainbow that comes after the rain. Perhaps happiness can be understood as the side effect of living life to the fullest.
For all the graduates, what a beautiful and momentous day! Let’s enjoy it to the fullest, but let’s not forget those less fortunate than us wherever they might live on the planet we share. Please accept my heartfelt congratulations! Graduations are times of intense emotion. I’ve never been to a graduation for myself or anyone else when my eyes didn’t tear up. Graduations are times of intense emotion. (Y.A.L.E. School, Cherry Hill, N.J., June 14, 2018)
Take a moment; take a deep breath and inhale the air at the top of what must have once seemed like a mountain for you and for your families. Today marks an ending and a beginning. An ending of high school and the beginning of a transition to college or vocational training. This next chapter of your lives won’t be easy, but you have everything you need. And what would a commencement speech be like without some quotes from famous people?
You know all too well what Kermit the Frog meant when he said, “It’s not easy being green.”
You have bounced back over and over with resilience and support and advocacy from your families. You’ve had a good education here at the Y.A.L.E. School guided by the scientific evidence how learning occurs and what makes Neurodiverse young people successful. You’ve had teachers and therapists and administrators who have worked hard and care deeply about you.
Just briefly, Neurodiversity is trending. It’s the notion that conditions like autism, dyslexia, and attention-deficit/ hyperactivity disorder (ADHD) are as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.” Employers, large and small as well as public and private, are realizing the benefits of a diverse workforce including people like you who are graduating today.
The concept of neurodiversity turns previously diagnosed deficits into strengths and advantages. So your different kind of mind also contains your power. For example, while individuals with ASD generally have difficulties socializing, they spend very little time socializing at work. You may have trouble getting the big picture or the gist of something, though you have an intense focus for the details. You may have difficulty with teamwork, yet are good at working independently on a project. There may be difficulties with reading comprehension, but there is a special talent for decoding.
As Temple Grandin put it, “the world needs all kinds of minds.”
Another example is that people with ADHD can excel in many occupations, such as police officers, firefighters, sales, medical professions, mechanics, construction, delivery people, etc. Accommodations, such as extremely clear instructions, and using preferred methods of communication, are useful for all employees.
What’s good for people with different kinds of minds is usually good for everyone else.
While people with ADHD cannot maintain focus well on one thing, they can focus intensely. Also, they would rather not spend time on details, but they can get the whole picture rather quickly. You may take on too many tasks simultaneously, but have the advantage of being very energetic. You may blurt things out, but are good at brainstorming which is an advantage in teamwork. You might have little interest in non-preferred tasks, but are passionate about things you are interested in. It may be hard to get your attention, but you are good at multitasking.
As Albert Einstein put it, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will spend its whole life believing it is stupid.”
Undoubtedly you have been hearing that the time is coming for you to advocate for yourselves. Make no mistake about it, if you don’t hand in an assignment on time, your professor will not take kindly to an email from your mom. You will be entitled to reasonable accommodations in post-secondary education or employment, but you will not be guaranteed services. You will have to speak up clearly about the accommodations you may need to be successful, such as extra time for tests or a quiet place to work, etc.
At first, you may think may think you don’t need any help, and that’s not abnormal for a new graduate, but I urge you to think and plan ahead and put in place the supports that you may need in the classroom or the workplace.
For parents, the challenge will be to stay out of your helicopter but remain available when needed. When your graduate does not want your help, try not to take it personally and realize that this is normal human development. It is how we all grow up, but it might be uncomfortable given all the effort it has taken to get to this day.
The journey of parenting is full of pushing and pulling, holding on and letting go. Speaking for myself, everything I have ever let go of had claw marks all over it!
As I have come to know, this lifelong journey that we are all on is truly an Odyssey, like the epic Greek poem, full of twists and turns as well as joys and sorrows, defeats and victories. So have a great day celebrating the victory of your graduation. Let the joy seep in and become a part of conditioning your mind for the struggles and successes that lie ahead. Use the tools that have gotten you here adapted to the challenges you will encounter.
I wish you well in love and work with safety and security every step of the way.
Men find it extremely difficult to talk about a problem they cannot fix. Of course, women want to fix the problem as well but generally have an easier time talking about problems. I know about this dilemma firsthand as the father of a now adult child with autism. Learning how to talk about our child’s condition is a vital step in being able to engage actively with our families and with the professionals we turn to for help.
Our tender and heartfelt emotions are not stereotypically masculine. Most men are comfortable being grumpy, irritable, or angry. Even though the role of fathers has changed considerably in our lifetime, some degree of irritability or anger is still the traditionally acceptable emotion for men.
We need to model for our families that we can express the tender emotions inside us but typically hold in. It’s okay to let a tear roll down your cheek when watching a movie or a tv show such as “This is Us” during an emotional scene. Let’s not pretend something just got in our eye. It’s ok to admit that we are afraid, such as when you’re out with the family, and another car slams on the brakes or swerves and narrowly avoids hitting your car.
It’s exhausting to pretend to be “strong” all the time. Keeping a stiff upper lip when sad or afraid is part of the traditional boy code. The unwritten rules of how to be a real boy or a real man are conditioned into our brains from early on. A “real man” is thought to be stoic and unemotional, physically strong, and doesn’t show weakness or ask for help. Fortunately for everyone, the #MeToo and Times Up movements are challenging us to look deeper and beyond the stereotypes that serve as gender straitjackets.
A man who cooks a fancy dinner for his family, for example, shows his daughter and his son that cooking isn’t inherently female. Teaching a daughter to mow the lawn or fix a leaky faucet shows these tasks are not inherently male. Men tend to be action oriented. Being more fluid with roles can create a discussion of what it means and what it doesn’t mean to be a female or male in today’s world.
On the plus side, our action-oriented, fixing mode is how we instinctively show our love and devotion to our families. While we all do so much to earn a living, fix stuff around the house, and drive our children to activities and therapies, it is vitally important to take that extra step to listening with keen attention. Sometimes this is all that is asked for and the only action we need to take; at other times, it leads to the needed action.
Nonetheless, raising a child on the autism spectrum can bring steep challenges. It’s not unusual for a father to find himself at a loss of how to interact with a child who is different from the one he expected. However, as dads learn to deal with this sense of powerlessness, they discover what they CAN do to help their child with autism (80% of whom are boys).
Traditionally, fathers have tended to “specialize” in play, whereas mothers “specialize” in caretaking and nurturance. A father’s play with his child is typically more active and rough-and-tumble, which gives them a distinctive role in supporting their child’s development through play. However, it tends to be more difficult to engage in play with a child who has more repetitive, and less varied play, as well as other challenging behaviors.
We need to spend some time each day joining our child on the floor or at the table having fun, following our child’s lead, and building a connection. Your child with autism is still a child, and we are still men and fathers. Our sons and daughters need more from us than a roof over their heads, therapy, and school.
From my experience facilitating support groups, workshops, and counseling fathers and families several key lessons stand out:
As I reflect on Father’s Day, our struggle needs no longer be framed in how to be a real man. A better goal is becoming our best selves and comfortable with who we are. In that process, we can help our children and family be their best selves as well. We need a fluid way to think about gender. The reality is that we’re all in this together, and we have a shared responsibility to make a better world for women and men along with the children in our care.
Autism Awareness month is right around the corner. What does it mean to you?
The road to acceptance routinely starts with some level of denial. Our biggest problem is that we don’t want any problems, and we think we would be happy without them. If we can’t solve problems, how can we live day to day? We start out as individuals and as a society denying a problem exists or when we do acknowledge a problem, we often deny how serious it may be.
I became a typical father in 1979. It was a dream come true—those magical first smiles, first steps, first words. Like most children with autism, my son’s early development seemed perfectly normal. I have a photo in which he made eye contact at 1 day old. He met his other milestones on time. Then in 1981, Tariq stopped talking, stopped playing normally, and began flapping his arms and pacing endlessly.
In 1984, around 4 ½ years of age, he was finally diagnosed. I couldn’t get the “A” word out of my mouth. It’s been called the “autism bomb.” I can remember the feeling that my head was going to explode. I couldn’t believe that it was a lifelong condition. That I would lose my perfect baby was beyond anything I could fathom. I can remember believing that I would never smile or laugh again if he never spoke again.
I was determined that I would not accept his autism.
Denial is essentially human and serves as a defensive mechanism that keeps us from getting too close to pain. We need denial when we’re not strong enough internally or when we don’t have enough support to deal with a painful situation. In our journey through life, denial is pervasive, constructive, and necessary to a point. However, it can be destructive if we don’t deal with it. Of course, we don’t want to believe bad news, but denial doesn’t make it go away.
Parents need support and good services to come to terms with what is possible and what is not for their child. I could not have ever found peace without support. My wife Cindy, Tariq’s stepmom, weathered the storms of his autism with me and never wavered in her love. She knew autism from working in the field and helped me grasp the diagnosis I was trying desperately to deny. It took me two years before I could utter the word “autism”.
From those first red flags of autism until now, I have not stopped experiencing autism and the family—the central theme of my life and work—counseling, teaching, and writing about the impact of autism on families. My articles and books have brought me into the lives of families around the country and the world.
Denial leaves us with few options to solve the problem, so opening to awareness is the necessary next step. We must look into the problem, explore, investigate, and understand it. It’s no accident that the Autism Society started Autism Awareness Month in April 1970. The growing awareness of the many problems that autism poses for individuals and families has led to constructive action. While denial keeps the door closed, awareness is needed at the individual and societal level to open the door to acceptance and what we can do.
Awareness comes with pain and frequently with anger which closes us down. By accepting the pain of wanting and wishing, of loss, and the mismatch of expectations and reality, only then can we truly open to possibility. Hearing that autism cannot be cured is a bomb for families at the moment of diagnosis.
Of course, we want to fix the problem, but given the lifelong nature of the condition, what is our responsibility to do? How do we live with it? We don’t have to deny what we cannot change. What do we let go of because we are powerless to change? Acceptance is not about giving up or resignation, but rather learning to live with something that is hard to face.
How could it be that my son would grow to adulthood and not read or write or speak? It was a grief like no other. My dream of a healthy child shattered. As it is for so many people in this situation, my hope for a cure would live on. For a long time, I believed that the best medical care and my love and efforts would change him.
In order to go on, we are required to accept the situation, the pain inherent in it, and the loss of what we expected. From that acceptance, we can arrive at a sense of ownership of the challenges and a strategy to do something constructive. Taking the right amount of responsibility comes from seeing the challenges clearly. This process of learning how to live with autism is ongoing. Learning that we can make a difference is a huge step on the path to acceptance.
I learned the developmental approach of celebrating what my son could do. This made a huge difference in our relationship. He became a happy child, and I learned to enjoy him and accept him as he was. When I constantly pushed him to do the things that seem ‘typical’, he was frustrated and cranky. When I played with him in the ways I thought were weird, such as by flapping, he laughed and responded and was happy.
Initially, parents struggle with the symptom of autism: problems with speech and language, difficulties relating to others, and repetitive activities. Most initially become very upset with their child’s difficulties and struggle to accept their child’s eventual diagnosis. They seek support and the appropriate interventions. They learn everything they can about autism. They learn about themselves in the process and fall in love with their child all over again.
Too much emphasis on trying to change or fix the child spoils the loving which is at the core of the relationship. Children with autism need positive, energetic parents enjoying and loving them as they are and simultaneously cheering them on for every little achievement. Inch-stones as opposed to milestones. Scientific evidence affirms that individuals with autism, just like those typically developing, can learn and progress through their lifetime. Early diagnosis, intensive evidence-based services, and parent involvement are all essential.
Loving someone with autism can be a transformational experience. When you lose the normal child you dreamed of, there’s no word for how alone you feel. You worry, you cry, you scream, you agonize…you grieve for what might have been for your child, for you, for your family.
What you couldn’t dream is how such a child could change you and bring out the best in you. After several years of trying to change and fix my son, I was writing in my journal and crying and realizing that he had changed me. This realization was the beginning of making me a better man and a better father-the journey that I am still on.
The very word “autism” can be a barrier to our shared humanity. Children with autism are first and foremost children. This irreducible truth is the key to unlocking the door to living, learning and accepting day by day the differences that autism makes for families. It is vital to think beyond the diagnosis and connect in the moment.
Mothers and fathers around the world are asking the same questions I anguished over 3 decades ago. Is there a cure? Will my child speak normally? Is the autism mild or severe? Did vaccines cause it? What about special diets? Can medication help? Can my child have a relationship? Will my child ever be independent? What’s the risk if we have another child? Finally, how can we help our child?
It takes time to get beyond these issues which understandably preoccupy us and we live day-by-day, noticing what is right and what is working at any given moment. It means getting together whether on the floor or at the table and enjoying each other’s company and interactions.
When we love someone, we want to be with them, yet sometimes it is hard to be with my son. A recent example occurs when he insists on getting back in the car when we go to the park and refuses to spend any time outside of it. The result is feeling like a bad person because I don’t want to be with him. These experiences have taught me to develop a capacity for patience which has served me well in other aspects of my life. Young people with autism, who have the verbal ability to describe their experience, tell me that the patience of their parents and teachers have helped them become who they are today.
When we learn to pay attention to what is going on in the moment, we can be angry, relieved, sad, hopeful, ashamed, scared, and peaceful before we even manage to get dressed and have breakfast in the morning. Psychologist and Buddhist Tara Brach has called this radical acceptance—the willingness to experience ourselves and our life as it is.
Tense uncomfortable feelings among family members often come from longing for things to be different from how they are and sometimes even blaming each other. Most likely we are all doing our best under trying circumstances, including the individual with autism. Giving each individual the benefit of doubt is acceptance in the family.
As we navigate everyday life with acceptance, we come to an appreciation of the autism spectrum as part of the broader human spectrum and the possibilities that open as we live. As we understand it currently, the autism spectrum has a wide span from the mentally gifted to the intellectually cognitive disabled. Their families are as diverse as the children.
Dr. Stephen Shore, a special education professor and autism self- advocate, states, “Tolerance and acceptance give a sense of putting up with something, whereas understanding and appreciation suggests valuing the contributions that individuals with autism bring to humanity.” From this perspective, autism is neither good nor bad. It just exists. It’s up to us as individuals and societies to support people with autism and their families in having full and productive lives. This matters especially in 2018 as larger and larger numbers of children with autism reach adulthood. Their skills and talents have virtually untapped potential to contribute to society on various levels from unskilled repetitive tasks to highly skilled STEM occupations.
I have come to realize that autism in the family teaches us about what it means to be human. It’s an Odyssey, filled with twists and turns as well as joys and sorrows. This is what acceptance looks like. It can’t really be any other way.
Just to fill you in, Tariq never spoke again and never learned to read or write. There are still times I wonder what might have been. Today he lives in a group home. He is severely autistic all the time and happy most of the time. Although he cannot speak, this is how his autism has spoken to me.
Robert Naseef, Ph.D. has a distinct voice as a psychologist and father of an adult son with autism. He has spoken around the country and trained professionals internationally in treating autism and supporting families. Along with Stephen Shore, Ed.D., Dr. Naseef is a lead consultant to the Arc of Philadelphia and SAP’s “Autism at Work” program which involves collaboration with the Pennsylvania Department of Education and the Bureau of Vocational Rehabilitation. He speaks at conferences nationally and internationally on issues facing families of children with autism and other special needs. He has a special interest in the psychology of men and fatherhood.
We are past Groundhog Day on the calendar, but sometimes it feels like we are still living it. Ever since the 1993 movie, “Groundhog Day” has become part of our everyday lingo that many people can relate to, and it certainly comes up in psychotherapy. In the movie, a weatherman finds himself living the same day over and over. The term has come to mean an unpleasant situation that repeats despite efforts to change it. But is there a way?
In the movie, Phil, an arrogant and sarcastic weather forecaster, spends the night in Punxsutawney, Pennsylvania to broadcast the annual ritual of the coming out of the groundhog. The groundhog sees his shadow and goes back into his burrow for 6 more weeks of winter. When Phil wakes up the next morning at 6 AM again, he is annoyed to discover that he is trapped for a second night because of a snowstorm. It turns out to be the morning of the day before, and everything that happened the day before happens all over again. Click to watch the trailer to refresh your memory or just get a few laughs if you haven’t seen it.
This goes on day after day no matter what Phil does. If he does nothing different, events repeat as on the first day. When we can’t change or fix something, it’s common to believe that tomorrow will be exactly like today. If I just try hard enough, I’ll get through it. Thinking like this binds us to the stories of our past, clouds the present, and limits our vision of the possible. When we approach life in this way, we are rendered powerless.
But when Phil changes his behavior, people respond differently and then possibilities open up. What is so powerful about “Groundhog Day” is the window it gives us into the experience of what it would be like to make a breakthrough like this in our own lives. When we get beyond denial and resentment and accept our situation, then life becomes authentic and full of meaning.
On February 2, 2018, an example of relating differently to a demanding situation came up in my psychotherapy practice. In his therapy session, a father told me it had been 11 years since his son was diagnosed with autism. He had been struggling with his own impatience and irritability daily. When he came home from work, he was quick to become frustrated with his wife and children. He desperately wanted things to change in his family. Understanding his experience as a personal Groundhog Day, he had identified adding exercise to his routine as something he could do differently that might change the way he related to his situation.
When we began our session, he told me that he had gone to the gym and exercised several times in the previous week, and he was changing. He was walking in the door with more patience, and this led to different reactions to his son’s repetitive language, his daughter’s requests for attention, and his wife’s stress. Instead of becoming immediately grumpy, he listened and did his best to be helpful. He used his sense of humor to defuse some of the tension in the family.
Like the weatherman in the movie, this father has begun to transform himself. He reacts differently. He becomes a better man, not a different man, with the same family. Challenges will recur in our lives; this is part of our shared human experience. My patient is doing his best to be a better father and a better husband. He will still have bad days, but now he knows there is something he can do about what he brings to the situation. Like the rest of us, when we change something in ourselves, we can become better humans.
So, when you find yourself stuck in your personal “Groundhog Day,” take a step back; check in with your thoughts and feelings; question your perspective. Look for a fresh viewpoint; reach out for support. Search for the light by coming out of that hole you’re in. As Mahatma Gandhi implored us, “Be the change you want to see in the world.”