How can you help families navigate the emotional landscape of autism?

Find out in this Q&A with the author of Autism in the Family: Caring and Coping Together

About the author

Dr. Robert A. Naseef

Robert A. Naseef, Ph.D, is a partner in an independent psychology practice with his wife, Cindy N. Ariel, Ph.D., who is also a psychologist. His first book, Special Children, Challenged Parents: The Struggles and Rewards of Parenting a Child with a Disability, has received international recognition. He has lectured internationally and appeared on radio and television.

Dr. Naseef holds clinical privileges in psychology at Penn Behavioral Health, part of the University of Pennsylvania Healthcare System. As the father of an adult child with autism, his specialty is working with families of children with autism and other special needs. He has a special interest and expertise in the psychology of men and fatherhood.

In 2008, Dr. Naseef was honored by Variety the Children's Charity for his outstanding contributions over the past 20 years to the autism community. He can be contacted at RNaseef@
alternativechoices.com or through the web site www.alternative
choices.com, and his blogs can be found on the Alternative Choices Facebook page.


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Q: You are in the distinctive position of being both the father of a—now adult—son with autism and a psychologist who specializes in working with families who have a child with special needs. Which of these came first, and what influence did one have on the other?

A: When my son was born, I was teaching reading in a literacy program for teens who had dropped out of high school in Philadelphia. The goal of the program was to help inner-city youths become employable and obtain their high school equivalency diploma. By the time my son was diagnosed with autism in the mid-1980s, I was the director of a federally funded special services program for disadvantaged students as well as those with disabilities at a two-year college.

Having seen so many of my students make significant progress, I passionately believed that the same was possible for my son. Yet early intervention and speech therapy was having little impact. From this experience, I was inspired to return to graduate school and become a psychologist focusing on the family issues of children with autism and other special needs. My research focused on how families of children with special needs developed coping skills. Make no mistake about it; I was doing this to help myself as well as others.

Tariq's autism drove me to learn and do more which helped me and helped me to help others. That dynamic relationship has grown and developed from his first red flags of autism to the present.

Q: Twelve years ago, you wrote Special Children, Challenged Parents to talk about the experience of having a child with autism. Now you and your son are 12 years older—how do the perspectives of the books differ?

A: I actually began writing the first edition of Special Children, Challenged Parents in 1988. I loved reading as a young child, but I never dreamed I would write a book—not until years after my son was diagnosed with autism. Then I had a story that I had to tell. It was a privilege and honor that it was published in 1996. People read my words and told me of the comfort and hope they found there, and so I kept writing. In 2001, Brookes published a revised edition as Tariq was entering adulthood. The central theme of my life and work from Tariq's diagnosis until now has been the journey to acceptance.

This new book focuses more narrowly and deeply on the challenges that the autism spectrum poses for family life. Over the last decade, I have traveled around the country and spoken to thousands of people struggling to accept autism and do the best job possible for their families. Seasoned by 24 years of professional practice as a psychologist and integrating advances in research and treatment, I have attempted in Autism in the Family to help families navigate the emotional landscape and the practical roadmap through the lifespan—from early childhood through the school years and adolescence and on to adulthood.

Q: It's hard to think of almost anything more heartbreaking than to see a glimpse of the spark within a child and then see it be shuttered—as happened with Tariq and other children. What, if anything, can professionals say to a family for whom this experience is fresh?

A: It takes time to mend a broken heart. It is so vitally important for professionals to just be there and listen to what it's like for mothers and fathers. It helps to ask what it's like for them. It is usually encouraging to observe even the smallest steps of developmental progress. Most of all, professionals can help parents be present in the moment with their child and find what they can enjoy together. In these moments of connection and attunement, the heart finds strength and rejuvenation.

The emotions of a broken heart are rarely far from the surface and not just for the families of those who are more severely impacted by autism. Generally speaking, children diagnosed with autism seem normal for the first year or more. At times I think it may be even harder for the parents of children with milder symptoms because it often seems that just working harder might make everything "normal" again. My perspective is that mothers, fathers, siblings, and children on the autism spectrum are doing the best they can under the circumstances. When professionals note and comment on the resilience of families, those families feel supported and encouraged.

Q: A central theme of your book seems to be the process of coming to accept your life as it is, not as you wish it could be. As a professional, what would you recommend to parents to help them with that process?

A: 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 desire for the healthy child or a typical family life may endure, and it may be hard to let go of that longing.

Second, I try to help people accept themselves. A perfectly lovely child or adult on the spectrum can be very hard to be with because of behavioral, social, or communication issues. When you love somebody, you think you should love to be with them. When you don't feel that, the guilt can be unbearable. You cannot accept yourself or any experience without seeing it clearly in a tender way with compassion. What Tariq has taught me besides accepting him is to accept myself.

Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family. That awareness is the gateway to love and wholeness. Ultimately children with autism are not just puzzles to be solved. 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 of and attuned to our child. 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 from us to whatever extent possible—as best as I can understand it—is the path to acceptance for families.

Q: As a father, what's the one thing you think professionals don't "get" when it comes to supporting families of a child with ASD?

A: I think professionals don't "get" how hard it is to have a child with the behavioral challenges of ASD. It often seems from the outside to look like the child with ASD is the boss or king of the family. Families often live holding their breath until the next meltdown. The household is often held hostage. Some families feel incarcerated in their own homes.

The over-emphasis on lessening the behavioral symptoms of autism makes it difficult at times to implement positive behavioral strategies that incorporate an acceptance of a child's developmental level and skills. The balance between accepting who your child is and handling problem behaviors is one of the toughest challenges.

A child's behavior draws attention to their parents, so for example, when a child is having a tantrum, others may wonder why the parent can't control that child. Parents are likely to be embarrassed and may feel inadequate. Fathers traditionally feel responsible for discipline in the home.

Professionals do not see or hear nearly as much from fathers as they do from mothers. So it is actually very understandable that the role of fathers is underappreciated. In general, men have a difficult time talking about the things they cannot change or fix. In the book, I discuss at some length what I called the "secret life of men" as it pertains to raising a child with ASD; admitting tender feelings has been taboo for boys and men. This can be a secret even from the men themselves.

Q: In the book, you mention "shedding the shame" at various points. You also mention your suspicion that challenges in children radiate inwardly to parents' own sense of being flawed. Do you think that shame is imposed internally or more externally, from the community?

A: Both apply and it's hard to separate which comes first. There may be a sense of failure for bringing a child with the challenges of autism into the world along with shame and guilt for feeling disappointed in your child. Given the genetic linkages, thoughts about parents' own quirks are natural. Shame results in wanting to hide and not be seen. Sometimes parents avoid families with typically developing children because of the practical difficulties of socializing together plus the embarrassment often triggered by their child's differences.

These feelings can be the most intense in public when people seem to stare at a child who is different from the norm. When people stare, the parent feels different. It is easier for many to feel angry and embittered. For mothers as well as fathers, accepting and embracing their painful feelings opens the door to shedding shame and embracing acceptance. The opposite of shame is pride. Pride can come from celebrating a child's successes, finding what's right with parent and child, and enjoying time together.

As awareness of autism grows, parents receive more compassion and support in their communities.

Q: What sort of policy changes would you like to see in support of families with autism?

A: As 2012 was winding down, there was a national conversation about a fiscal cliff for the federal government and the country. For parents of children with ASD and other special needs, there is a cliff at age 21 when services are no longer guaranteed except for those diagnosed with intellectual disability.

From the moment of diagnosis onward, parents understandably worry about adulthood for their children. If a child cannot become independent by adulthood how will they live and how will they be supported?

It has been said that there is strength in numbers. For a humane society, as well as for the autism community, it is essential that we use our strength to secure a meaningful future for our families.

While the social and emotional development of young people with ASD may be delayed, there is strong scientific evidence that it continues in adulthood. Racism and poverty compound the challenges for families. With adequate support, it is reasonable to expect continued slow steady progress just as with typically developing adults.

The policy change that we need desperately is to extend support and training for individuals with disabilities through adulthood.

Q: Parents of adult children with autism have exhausted themselves trying to do what is best for their families. They've tried treatments. They've read books. They've talked with specialists. What can anyone tell them or provide for them at this point that can give them genuine relief or support?

A: This exhaustion is typical for parents from the early years onward. Trying to cure autism or even eliminate its most troubling symptoms can feel like drowning in quicksand. Accepting a child with autism involves working to change what can be changed, celebrating each step of progress, and embracing the child in the here and now. It is a delicate balance which is constantly evolving and requires dedicated parents with good supports and services.

Parents of adult children with autism like those you mention have done a good job. They worked hard and come a long way with the love and courage. What they need more than anything is the peace of mind that their vulnerable adult children will be adequately cared for when they can no longer do so themselves. This is a public health challenge and a moral imperative for society.

Q: One of the most poignant moments in your book comes when you talked about the election of a mixed-race president and not being able to talk about the historical significance and relate it with your own son. What can a parent of a child with autism do with all the If onlies and the unanswerable questions?

A: Thoughts like these are human and natural. Many parents have told me that they try not to wonder what might have been, but trying to block these thoughts can cause more pain.

When Tariq was born, it seemed inconceivable that there would be an African-American president in our lifetime. Yet a fundamental truth is that everything changes and nothing remains exactly the same. This is also true with our troubling thoughts and intense feelings. Like the weather they can come and go. But just as after a storm, the sky clears and the sun does come out again.

This is an approach based upon mindfulness which does not mean eliminating painful thoughts and feelings. Too much focusing on what's wrong and too much trying to change someone with ASD blocks us from experiencing happiness and acceptance in our lives. This does not mean denying real problems. It just means paying attention to the moments we might overlook or ignore, such as our children running to us when we get home even as the house may be a mess. I counsel parents to pay attention to the experiences that bring pleasure in family life.

Q: Your book focuses on your experience with Tariq; in it, you thank him for being a good son. What message would you like to give your daughters?

A: My daughters will be glad you asked this question, as am I. Tariq gets the book, but they get the final question. I am incredibly grateful to have them in my life. As I reflected within my writing, Tariq taught me among other things to look inside myself and find how to be a better man and father. My daughters on the other hand have taught me to listen and think even deeper. They boost my manhood in different and untold ways. Sometimes I bite my tongue when they tell me, "Just listen, Dad." My brain is instantly overloaded. What am I supposed to do? How can I solve the problem? What have I done wrong?

More often than not I don't have to do anything—I just have to get out of their way and be there while they find their own way. Watching them grow has filled me with pride and wonder. They are young women now with big hearts and strong keen minds. I have no doubt that their lives will make a difference; that they will make a difference. It is a distinct honor to be their father.

More than anything they continue to teach me how to be human and what it means to be family. Recently they surprised me on my birthday by showing up from 2 different states to have dinner. This was one of the best days of my life so far. They show me a kind of love that is different from what Tariq can ever show me and it means the world to me.


Autism in the Family: Caring and Coping Together

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