Autism Acceptance and Beyond

Autism Awareness month is right around the corner. What does it mean to you?

Naseef_ Ch 2.1 Eye ContactThe 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.

Time of DiagnosisDenial 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.

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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.

Posted in acceptance, adults, autism awareness, autismacceptance, children, denial, diagnosis, families, international, Uncategorized | 1 Comment

Lessons from Groundhog Day: Recurring problems and personal growth

Groundhog dayWe 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.”

 

Posted in acceptance, anger, anxiety, autism, awareness, children, Marriage, personal growth, repetitive behavior | Tagged , , | 1 Comment

Tips for Gift Giving

Interfaith LogoHolidays and birthdays are times to enjoy our children. No matter which tradition you celebrate, holiday shopping can extract much of the joy and excitement for many people. Parents of children with autism struggle with what gifts to buy and dread that nothing will work out.

When I sit with parents as a psychologist, the emotions are the same for birthdays and holidays. Most parents typically envision their excited child having fun with new toys, yet many parents of children with autism are confronted with celebrations marred by meltdowns and disappointment. The frequent behavioral challenges can make for gritty and unwelcome moments. By knowing what is realistic to expect and being prepared with coping strategies, families can sidestep many problems and enjoy their time together as much as possible.

A thoughtful mother I know learned to be “realistic” now that her son is four. Instead of buying an “age appropriate” first remote controlled car, she bought him some toys that he would enjoy even though the label said “30 months.” She will enjoy his fun and still hope and work for him to develop further by having fun interacting with the rest of the family.

I know a father who got past his own grief and bought his 16 year old son the Sponge Bob t-shirt his son asked for. These parents have found a measure of acceptance. It takes time, but most people do move toward acceptance. Children with special needs teach their parents and others to cultivate patience and appreciation of what they can do.

Another father was very disappointed that his son didn’t like having a catch with the football. He came to the conclusion he should look for a two player video game he could play with his son. You may want to consider various apps that promote learning and interaction. There are many reviews available, such as at https://www.lifewire.com/ipad-apps-for-autism-spectrum-disorder-4114202.

If you need help thinking through your choices, the National Lekotek Center is an excellent resource. Check out their recommendations on the “Top Ten Things to Consider When Buying Toys for Children with Disabilities”, http://www.mychildwithoutlimits.org/act/family-life/tips-for-buying-toys/. Toy Evaluations and Ratings for various toys are also available at www.ableplay.org. Your child’s teachers and therapists can also be good sources to consult with for ideas.

Overall, think about what will put a smile on your child’s face. 

There are 3 key issues to carefully consider:

  • Does the toy fit the child’s developmental age or stage?
  • Does it reflect the child’s interests?
  • Is there potential for interaction?

Children with autism are first and foremost children, so understanding each child’s individual characteristics is the key to enjoying holidays and birthdays. It may not be what you imagined, but you can still offer your family the love and warmth that really matters.  As opposed to wishing and pushing for things to be “normal”, understanding and accepting your unique child, is the best way to plan and enjoy your time together. An important lesson that all children can teach us is that parents’ time and attention is exciting and wonderful. Try not to get caught up in the consumer-oriented rush. Let’s connect with family and friends with mind and heart and enjoy our time together.

Posted in autism, behavior, children, gift, special needs | Leave a comment

Lost your patience? How to get it back

parent-yellingParents have frequently confided to me when they have lost their patience. Fathers, as well as mothers, share their guilt and their heartbreak when this occurs. As one mother said to me recently, “My mother yelled at us, and I vowed to never yell at my children. Now I’m becoming a yeller. What’s wrong?”

Just last week a father told me about how he lost it with his four-year-old son with ASD. After picking up his son from school, he stopped at the convenience store for his wife to pick up milk for the next day’s breakfast.  His son did not want to stop and had a full-scale meltdown. When he didn’t calm down, his father started yelling at him. Now just a few days later, his father was wracked with guilt.

This father like other parents felt guilty. I assured him that his reaction was not unusual and did not indicate that he was a bad parent just because he lost his patience. He told me that his son had made tremendous progress since being diagnosed over a year ago, and he just couldn’t understand his own impatience.

I briefly discussed with him that difficulty regulating emotions was more often than not one of the challenges that go along with an autism spectrum diagnosis. Changes in routine, such as stopping at the store, can often be a trigger. This occurs all along the spectrum from mild to moderate to severe.

By the end of our counseling session together, this father looked at me and came to his own conclusion. “I have been expecting too much. That’s the lesson I’m learning. I have to do better at managing my expectations; that’s the only way I can remain patient during situations like this.”

Of course, this sounds simple, but in the moment it is easier said than done. In order to manage expectations, it is important to understand and be mindful of the individual developmental profile of your child. The best way to understand this is to learn everything possible about your child’s diagnosis and communicate regularly with your child’s teachers and therapists.

For parents who are struggling in terms of your expectations about yourselves, let’s be clear: it is normal to struggle with your patience in challenging situations.  So the next time your child has a meltdown, take a breath—or two or three. Then ask yourself what you’re expecting and how reasonable that is in the moment you are presently in with your child.

Moment by moment, day by day, being mindful of these issues, you and your child will both grow.

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Siblings Need Attention Too!

4809691-teenage-girl-with-a-thermometer-in-her-mouthRecently, I spoke at a conference about how to take of everyone’s needs in a family raising a child with special needs. Paying special attention to the unique needs of every child was a key point when discussing typically developing siblings. A young woman approached me privately on the lunch break and told me that she faked getting sick as a teenager. She explained to me it was the only way she could get to spend time one on one with her mother. She was growing up with a brother who has autism.

She reported that she would take a thermometer and run it under hot water until the mercury showed a fever then show it to her mother. This way she got to stay home and be with her mom all day.

Now she and her mom can laugh about it, but it wasn’t funny at the time.

Posted in acceptance, autism, diabilities, families, parents, siblings, special needs | Leave a comment

Fathers are Stepping Up Around the World: and Raising Children with Autism

Strong fathers strong familiesAccording to a new 2017 global survey, men are taking “greater responsibility for the home and childcare” than previously in both emerging and developed economies as reported by Reuters. In 2013, the CDC reported a nationally representative survey which found that a large majority of fathers reported being heavily involved in hands-on parenting. (Jones and Mosher, 2013). Father involvement has been shown to result in better academic success, fewer behavior problems, and healthier eating habits for children in general. Recent studies, as reported in last June’s Autism Notebook, have pointed to similar positive outcomes for children growing up with autism.    

Nonetheless, men still have a hard time facing things they can’t fix. The hurdles that accompany autism often leave men feeling powerless and speechless. 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 (80% of whom are boys), their family, and themselves.

Focusing on what an individual can do opens up opportunities to live fulfilling and productive lives. The concept of neurodiversity as Steve Silberman described in NeuroTribes is “the notion that conditions like autism, dyslexia, and ADHD should be regarded 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.”

Corporations, government agencies, small businesses, and nonprofits are discovering the strengths that young people on the autism spectrum bring to employment, and they are starting to actively recruit them. The quirks that come with autism sometimes mask hidden strengths, such as intense focus, or a special skill with numbers and patterns.  People with autism also like repetition which is an advantage in many workplaces. They can be great at catching errors; they don’t waste time socializing on the job; and they are loyal employees who are retained longer by their employer. This saves employers significant costs in recruitment and training.

Many of these initiatives are led by fathers and mothers of children with autism at Specialisterne, SAP Autism at Work, HP, Rising Tide Car Wash, etc. Despite these positive trends, we have a long way to go. A large percentage of individuals with high functioning or mild autism have extreme difficulty finding work. Many lack the social or soft skills that go into a typical job search. In 2015, Autism Speaks launched a website to match workers who have autism with prospective employers. (https://www.thespectrumcareers.com/ )

Fathers can help through action at the ground level 

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. Oftentimes fathers feel overwhelmed and are unaware of how to address these issues. As a result, the necessary but narrow focus on trying to eliminate troubling symptoms can place the father’s emotional life, marriage, and other children on hold indefinitely.

Taking action is one of the main ways that men show their love for their families. Here is an outline of a plan:

  1. Acknowledge your frustrations. Celebrate what’s going right! Give yourself permission to open up to the full range of your thoughts and feelings which may include fear, guilt, depression, anger, anxiety, hope and love. Some take autism in stride, but often it can feel like an emotional bomb at first. Unpleasant feelings will ebb and flow, often opening the door to hope and celebration in the little steps of developmental progress.
  1. Spend some time each day joining your child on the floor or at the table having fun, following your child’s lead, and building a connection. Your child with autism is still a child and needs more than therapy and school. Parents cannot control the outcome for any child, but they can certainly make a difference and have a rewarding relationship.
  1. Try to spend at least a little time each day with your other Typically developing brothers and sisters often feel rejected when their sibling doesn’t engage with them, sadness over not having a playmate, and sometimes embarrassment outside the home, not to mention having stressed out parents.
  1. Work at understanding the different perspective of your partner. Mothers, including those who work outside the home, are consumed by the day-to-day needs of raising a child with special needs. It’s hard to take a break from needs that do not diminish.  While reports of an 80% divorce rate are unfounded, evidence does support increased stress, anxiety, and depression in both men and women as a result of raising a child with special needs.
  1. Take care of yourself and your relationship. Appreciate what your partner is doing right. Make time for each other, as you need each other more now than ever. All children need active, positive, energetic parents. In a very real sense, children cannot thrive if their parents are drowning. It might be impossible to have “date nights,” but it is conceivable to do little things for each other, thus nurturing your relationship.
  1. Attend as many appointments and IEP meetings as you can. Don’t hide behind your work as a reason not to participate. Your partner will feel less alone and more supported, plus your child will tend to get a better deal at the table with 2 active, involved parents.
  2. Find a way to connect with other fathers; whether it’s at a meeting or just hanging out at a school or community event. Share your story, acknowledge your needs, and talk about what works in your situation. 

Conclusion 

From my experience facilitating support groups, workshops, and counseling fathers several lessons stand out:

  • Focusing on what’s going right
  • Celebrating every success, large or small
  • Not taking problems and behaviors personally
  • Tempering expectations
  • Becoming more humble
  • Learning increased levels of patience
  • Trusting the process their family is going through
  • Embracing what “is” versus what is “supposed to be”
  • Deepening commitment to their children and families

For me, my journey with my son’s autism has taught me to accept what I cannot change and to become a better man and a better father in the process. This has become clear as I see him happy most of the time and autistic all of the time. What I have seen in myself and others is that the long trajectory of loving and raising a child with autism bends toward acceptance.

References: 

Jones, J. & Mosher, W. D. (2013). Fathers’ involvement with their children: United States, 2006-2010. National Health Statistic Reports; no. 71. Hyattsville, MD: National Center for Health Statistics.

Silberman, S. (2015). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. New York: Penguin Random House.

Taylor, L. Men more involved in parenting than ever before: Global survey. Reuters, May 2, 2017. http://www.reuters.com/article/us-global-women-survey-idUSKBN17Y1RR?utm

Image: https://obamawhitehouse.archives.gov/blog/2011/06/15/strong-fathers-strong-families

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Robert Naseef, Ph.D., is a keynote speaker, psychologist, and father of an adult son with autism.  His TEDx talk, “How autism teaches us about being human” is on YouTube. His latest book is Autism in the Family: Caring and Coping Together (2013) by Brookes Publishing.

Posted in autism, autism awareness, autismacceptance, families, fathers, international | Tagged , , , , | 2 Comments

“Love doesn’t keep score. Siblings do.”

 

360_autism_siblings_1221400 people seemed to nod in agreement when Caroline McGraw used these words to describe some of her difficulties growing up with a younger brother who has autism. Few among us would deny this truth of family life-whether there is a disability or not. The scene was the Kern Autism Network Annual Conference in Bakersfield California on March 14, 2014. The theme of the conference was “Understanding DSM-5 and Family Dynamics.”

With examples from her own life, Caroline enumerated what’s hard in an honest clear voice:

  • the unfairness of sharing attention
  • being a third parent
  • feeling one doesn’t belong or fit in with peers
  • guilt and shame
  • acceptance of your sibling as they are

Caroline loved her brother dearly, yet she did not want her friends to see the chaos that his meltdowns caused. She was jealous of the attention his condition required of her parents. On the other hand, she felt responsible at times for her brother’s care and disappointed in herself when it was too much for her. With a calm presence, she explained her own three key coping strategies:

  • Honest conversations with parents and others about the struggles and joys
  • Invaluable  feeling of solidarity when connecting with fellow siblings
  • Experience working as a caregiver for other individuals with special needs contributed to a balanced perspective.

Despite the difficulties, she wouldn’t want a different brother. She could live without the meltdowns, but her love for Willie was palpable as she explained how she has come to appreciate “the inadequacy of language to express our deepest feelings and truths.”

Her tale of anger, rivalry, and jealousy mixed with warm loving feelings can be difficult to acknowledge but an integral part of the reality that bonds siblings.

Check out Caroline McGraw’s blog “A Wish Come Clear”, inspired by Willie.

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The  Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

Posted in autism, autism awareness, autismacceptance, families, siblings, Uncategorized | Tagged , , , , , | 2 Comments