By Robert Naseef, Ph.D. —
There are times when I still wonder who my son might have been, without the autism, and who might I have been as well. Sometimes when I see a father with a little boy, it seems like only yesterday when Tariq was that age. Yet it is over 33 years since I held him for the first time. My heart pounded with excitement as I held his soft body next to my chest and our eyes met. His skin was so soft to the touch. Magically he made me a father. Visions of playing baseball and building model airplanes together and having a warm, close relationship danced in my mind. It still warms my heart when I talk to people and recall how his life flowed smoothly through those first 18 months—even beginning to talk.
Everything changed as the “autism bomb” hit and he stopped talking and began endless repetitive activities. He stopped relating and sharing his joys. A few years later he was diagnosed with autism. The impact sent his development and family life veering sharply from the course we were on. That I would lose my perfect baby was beyond comprehension. How could it be that he would grow to adulthood and not read or write or speak?
I thought I could change him and make him the boy I wanted him to be, frantically and persistently following various treatment approaches: behavioral, educational, dietary, and developmental. Despite intensive treatment, he did not make dramatic progress. Instead he has been a catalyst to transform me, and help me to become the man I needed to be. He taught me the meaning of unconditional love—to honor his sacred right to be loved for who he is, not what he has achieved lately, how he looks or how much money he will earn. Without words, he continues to teach me priceless lessons about the human spectrum we all live along.
Now I know what Kahlil Gibran meant when he wrote about how moments of joy and sorrow are inextricably woven together. Sorrow opens our hearts for the experience of joy. Accepting that his condition had no cure was imponderable. Nonetheless I learned the developmental approach of celebrating what he could do. This made a huge difference for our relationship. He became a happy child, and I learned to enjoy him and accept him as he was. But the autism refused to go away. My son still preferred to be alone most of the time.
Today I am blessed with a family who loves me and a profession that I love. As a psychologist, I help families who are struggling with the special needs of their children. I try to help them enjoy life with their children by first accepting and embracing their pain as parents.
A book that helped me tremendously was Why Do Bad Things Happen to Good People? by Rabbi Harold Kushner. The emotional ups and downs create a landscape around us as families that can be treacherous and threatening. Any disaster from the personal to the epic can trigger a spiritual crisis such as occurred with the tsunami of 2004 or 2011. Is God punishing innocent people for sins of past generations or reminding the world of his omniscient power? Or is God found in the healing and compassion that is evoked in how we respond? Indeed such an event of nature places the individual diagnosis of autism in a perspective that can calm and enlighten.
In my everyday life, some of the issues you would hear in my office include mothers obsessed with their child’s needs and barely able to think about anything else and feeling guilty about that. Fathers are feeling left out and powerless to rescue their families or cheer up their spouses. Children are trying to cheer up their overwhelmed parents. I see families split in two, one parent with the “autistic” child and the other with the “typical” children. Children are struggling to make friends, as are their parents who want to fit in with the community of mothers and fathers. They grow weary of being a therapy mom or dad instead of a soccer mom or dad.
This is only the tip of the iceberg. When people get more comfortable talking about how life really is, they often reveal signs and symptoms of clinical depression, anxiety, traumatic stress, anger management issues, sexual dysfunction, etc. All the while love makes giving up unthinkable. Helping people to regain their balance, take care of everybody’s needs, and rejoin the current of their lives involves endurance, courage, and accepting what is unchangeable.
First, I try to help people look at their grief. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. I learned we don’t have to lie to ourselves. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life. Our life force is resilient, but the longing for a typical child may endure. You have to learn to live with that yearning, but you don’t have to lie to yourself about it. When you are really honest with yourself, the feeling passes, and you can enjoy the child you do have and be a great parent.
I have observed the tendency that women shed their tears openly while men cry on the inside. Some individuals cry a lot; some cry a little; some never cry. Everyone’s heart breaks and it takes time to heal. In the 9th century, the Persian poet Rumi told us to pay attention to the wounded and bandaged place for that is where the light enters. As child psychiatrist D.W. Winnicott said, “Mothers are helped by being able to voice their agonies at the time they are experiencing them. Bottled up resentment spoils the loving which is at the back of it all.” Winnicott was talking about the mothers of typical children. I have come to realize that in some measure this is the journey of all families. Feeling our experience is the first step to handling it.
Second, I try to help people accept themselves just as they are. This is a key in accepting our children with an open and loving heart. A perfectly lovely child or adult on the spectrum can be very hard to be with because of their different way of being. But when you love someone, you expect yourself to love to be with them. When you don’t love being with your child, the guilt can become unbearable. This is an inner conflict that any parent can relate to—for parents feel like this a child is doing something a parent doesn’t want.
You cannot accept yourself or any experience without seeing it clearly and with compassion in a tender sympathetic way. What Tariq has taught me besides accepting him is to accept myself. The challenges in our children can radiate inwardly to our own struggles. I had to begin accepting my own flaws. As psychologist Carl Rogers taught, when we accept ourselves, only then can we change.
Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family life. That awareness is the gateway to love and wholeness. Ultimately Tariq is not “damaged.” Along with other children and adults on the autism spectrum, he bears witness to the diversity of the human condition and the resilience of our soul. That deep connection that a parent feels with a newborn, or a child’s first steps, or first words can be felt at any moment when we are truly aware and attuned to our child.
This open awareness keeps the heart open and the mind as clear. Yearning for what we don’t have blocks knowing and loving the child we do have. Seeing our child for who she is and giving what she needs to whatever extent that is possible. This is the path of acceptance.
Tariq is a man now. He still puts his head on my shoulder. He has brought many kind people into my life and helped me to understand myself and others. He’s a good son. He made me a better father and a better man.