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.