Every time the phone rings…I jump from Robert Naseef, Ph.D.

“It seems like every time the phone rings I jump.” Not a week goes by without a parent of a child with a disability echoing these words in my office. Is it a phone call from a child’s school asking that the child be picked up early because of a meltdown? Could it be another injury on the playground or in the classroom? Or has my child had another seizure? Otherwise, is a teacher reporting that many assignments have not been completed? All possibilities to be sure, but maybe it’s not bad news after all.

Let’s take a breath and look at the traumatic emotional impact of a child’s disability upon the family. Trauma (in the DSM-IV) is the personal experience that involves threat to one’s physical integrity. Trauma can also be caused by witnessing such an event, or by learning about an event that has happened to a family member. While most disabilities are not life threatening, having such a child often produces the same symptoms in families. Although traumatic stress related to developmental disabilities is only recently appearing in the professional literature, this concept can provide a lens for understanding what families go through.

A “bad day” is often lurking in the shadows. For example, if a child has a tantrum in the supermarket that attracts attention, or bolts across the street without looking, a parent or sibling may react intensely—triggering palpitations, shortness of breath, dizziness, and even flashbacks to other even more stressful incidents with the child.

Family members may experience nightmares and disturbed sleep, as well as a sense of despair. They may spend long periods of time on edge and behave irritably with each other as a result. But families are resilient and with support and effective intervention, some sense of order and predictability can be restored to the family members’ lives, and thus the overpowering sense of helplessness and powerlessness can be alleviated. Parents and siblings may need to help themselves to learn how to regulate their emotions during these periods.

Families go on courageously to find meaning in their struggle and love for their child and life itself. Although families cannot control what happens, we do have a lot to say about how we handle things. So if you jump the next time the phone rings, remember that’s a normal reaction for people who have been traumatized. You have handled things up until now and you can manage this one. Take a breath, and recognize your fear is about what may have happened. Take another breath and meet the moment that is happening—maybe it’s just a friend calling to say hi.

We invite you to let others hear about your experiences.

Advantages of Being Different: A Commentary from Robert Naseef, Ph.D.

Sam and his grandpop are quite a pair—each remarkable--Sam with autism and Dan with quadriplegia. In The Wisdom of Sam: Observations on Life from an Uncommon Child, Dan Gottlieb, Ph.D. writes with simplicity, gentleness, and keen insight about their relationship, the human condition, and what he learns from his grandson.

So much is “normal” about them. Until you imagine Dan in his motorized wheelchair or read about how Sam doesn’t know how to join in a conversation with other kids his age, or is asked to leave his mother, or is confronted by a change in the day’s routine. Such is life with autism, but as this grandfather points out the limitations don’t matter for “We are who we are.”

Because of his autism, Sam often notices things about the world around him more clearly than his parents or his grandfather. It could be a texture or a color or the words used in a particular situation—something others have missed in hurrying around. As we read about Sam’s observations, we become enlightened to some advantages of autism. Dan reminds us through Sam’s observations of the simple truths and passions we once knew as children.

When my son’s autism began almost 30 years ago, I tried single-mindedly to change him. After 7 years, I realized that he had changed me. Likewise Sam’s perspective through his different kind of mind makes him a remarkable teacher to his grandfather and readers from all walks of life.

I met Dr. Dan Gottlieb in 1997, when he interviewed me on his radio show Voices in the Family on WHYY-FM about my book, Special Children, Challenged Parents. He was genuinely interested in asking me what it was like to have a child with autism who had lost his speech. He looked in my eyes, and I knew then that he was not afraid to hear the real answer. Words stuck in my throat, my eyes filled up. He went to a station break, asked if I was ok and told me he wanted listeners to hear my story.

Having been close friends and colleagues ever since, I am hardly an objective reviewer. However I can tell you with certitude from over 25 years of listening to other families of children with autism, that many have experiences of profound insight and learning from their children. These are precious autism moments that reward parents’ love and devotion.

The Wisdom of Sam elevates these moments with dignity, grace, and profound meaning. This is a book I will pick up over and over to take me back to the passions of childhood and that wisdom inside. Don’t miss it.

Check out the trailer on YOUTUBE. http://www.youtube.com/watch?v=_V4QrekU1Wk

Release date 4/1/2010. Orders can be made now on Amazon.

Autism, Science and Recovery: No Simple Answers

by Cindy N Ariel, Ph.D.
and Robert A. Naseef, Ph.D.

Frequently we are asked, “What side are you on?” referring to the debate about vaccines and autism and the recent retraction of Wakefield’s article by the medical journal Lancet in Great Britain? Certainly parents have become passionate on this issue. The discussion is complex and there are no simple answers, but there is unmistakable progress in theory and research.

In recent years, responding to political pressure from the autism community, funding has dramatically increased, and scientific research has picked up its pace. Autism Speaks recently reported the Top 10 Research Studies in 2009 from epidemiology, early intervention, genetics, biology, language acquisition, etc. You can read summaries of this research and get the original sources at: http://www.autismspeaks.org/science/science_news/top_ten_autism_research_events_2009_prevalence.php

Also, in the current issue of The Autism Advocate, Martha Herbert, M.D., Ph.D. and Donna Ferullo contribute an engaging article, “Autism and the Environment: Is there a link?” The authors hypothesize that the rapid rise in diagnoses of autism and other conditions challenges the model of autism as an incurable genetic disorder. The concept of incurable does not capture the phenomena of how dramatically some individuals improve. The new model sees autism as a whole-body condition with complex genetic vulnerabilities and numerous environmental triggers. The Autism Society of America offers a free online course, “Autism and the Environment 101” by these same authors on the society’s web page at http://www.autism-society.org/site/PageServer?pagename=RESEARCH_ENVIROHEALTH_101

As Roy pointed out in the discussion on our Facebook Wall, “As far as I know a person with ASD does not become 'cured'. Yes, many get better (thankfully) but ASD and 'cured' seems to be an oxymoron. I have an ASD daughter and a nephew severely impacted by ASD.” In our 25 years of professional and personal experience, we see families struggling to get past the shock and the turmoil of the initial diagnosis and get the needed services for their children.

As current scientific data confirms, there is no single known cause or cure, but autism is treatable. The children and their families progress--some by leaps and bounds, some slowly, and some barely if at all. Such is the mystery of the spectrum we have come to know as autism. Such is the process of coming to terms with what is changeable and what is not, and which varies for each individual and family. This is how we think of recovery from autism. We have not seen children cured of autism, but we have seen them outgrow many symptoms. Early diagnosis and intervention has been found to be extremely important in developmental progress.

The need for state of the art services for the 1 in 91 children and their families who have been impacted by autism is urgent. Alarmingly, a two year old child just diagnosed with autism gets only a few hours of home based services per week, while experts on the National Research Council (http://www.nap.edu/openbook.php?isbn=0309072697 ) recommend that “services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives.” (Executive Summary, p.6)

Parents shouldn’t have to beg and scream for these services. Many schools are poorly funded, especially in the inner cities and rural areas. Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers.

It is heartening to have autism awareness in public focus. With the right services and supports, many people with autism can live meaningful lives within their families and communities.

Let’s do our best as a society to provide help and to find solutions--before it’s too late—for our children and grandchildren.

Letting Go of Anger

Recently a woman at a workshop on coping with the stresses of raising a child with autism, shared that, “Once I let go of my anger, I had a whole new life.” She told her story. Several weeks before her baby was due, she was rear-ended in her car and taken to the hospital. When she went into labor a few days later, she thought this was caused by the driver of the car which struck her. When her child was diagnosed with autism a few years later, she angrily blamed that driver. She stated that she needed someone to blame. This went on for several years. She told people that when she let go of her anger, she started to really enjoy her child and her life. She had been miserable staying angry.

From Robert Naseef:

Anger is often about a perceived sense of injustice. Next time you feel your anger brewing, check your thoughts. See if you are thinking that you have been wronged, or slighted, or mistreated in some way. Remember that just because we think something doesn’t make it true. But the more we think about it, the more true it may seem.

Everyone doesn’t have a child with autism or other special needs, so there is a deep sense of alienation or not belonging. Anger is complicated. It comes and goes in the normal emotional flow of our lives. Often, if we look deeper, we are feeling tender or hurt. There may be thoughts of "Why me? Why did this have to happen to me?" Losing something precious hurts. Parents want and even temporarily need someone or something to blame. It might be themselves, each other, the doctor, vaccines, etc.

Anger may energize us to fight for justice, for what is fair and human, such as the services our child desperately needs. It can inspire change that needs to happen or it can eat us up inside. The journey to let go involves coming to grips with the issue of what we can and must change and what we cannot change and therefore must be willing to live peacefully with. This can take years to come to grips with.

Handling anger well is a skill involving emotional intelligence. In Emotional Intelligence, Daniel Goleman quotes no less an authority than the philosopher Aristotle, “Anyone can become angry—that is easy. But to be angry with the right person, to the right degree, at the right time, for the right purpose, and in the right way—this is not easy.”

While it is crucial to be open and honest about our feelings and have a life story that makes sense, we can get stuck in that story. When that happens, we just rehearse the anger and suffer because things are different from what we expected and wanted.

When she was able to let go of her anger, the woman mentioned above began enjoying the progress her son is making and enjoying her daily life with him and the family she loves. Letting go and embracing life—gently.

From Cindy Ariel:

Anger is a normal, healthy emotion. We often do not learn positive ways to deal with our anger and so it is often viewed as negative. In truth, there is no negative emotion. While anger can be scarier than other emotions because it can bring out aggressive thoughts and intense physical feelings, all emotions, anger included, are important and positive in that they help us to handle our lives in different ways.

Too much anger for too long can affect our health and the quality of our lives. For example, unexpressed anger can lead to behavior that is passive aggressive, anger turned inward may result in depression, and anger’s physiological effects can affect our bodies in the longer term leading to such problems as hypertension and chronic pain. Once we get through our anger about any given event or situation, we are bound to feel better because we no longer feel the sometimes uncontrollable feelings of aggression and the physiological distress that anger often provides.

The problem with an anger inducing scenario like the one above is that while most of us would have been similarly angry with the person we thought was to blame, holding on to this type of anger without expressing it assertively and/or constructively will not lead to a positive outcome; it will fester and infect our energy and perspective. We can let go of anger when we are able to express it in an assertive and constructive manner rather than an aggressive and destructive one. If, as in this situation, a direct expression of the anger would still not fix anything or make the anger go away then it's necessary to channel the anger into more productive action such as advocating for the child to get all that he deserves.

When people are angry, they describe all kinds of side effects. In addition to depressed or aggressive thoughts these may include: headaches, tightness in the chest, shakiness, muscle tension, difficulty swallowing, etc. It's important to deal with these physiological effects by learning ways to calm our inner emotional selves. People do this in all kinds of ways such as through meditation, breathing and relaxation techniques, art, walking, or journaling to name a few. No wonder that when we are finally able to resolve and let go of festering anger we feel so much better and can get on with the rest of our lives.

This is how we help people in our psychology practice. When people have trouble letting go of anger, it is wise to consult a mental health professional.

Empathy and Autism (by Kate Altman, M.S.)

From time to time, parents will tell us that they do not believe their child really has autism, despite having all of the symptoms, because they do not “lack empathy.” Like these parents, I have also read literature that makes this assumption: that people with autism have little or no empathy for others. This assumption puzzles me. “Lack of empathy” is not a diagnostic criterion in the Diagnostic and Statistical Manual for Autistic Disorder, Pervasive Developmental Disorder, or Asperger’s Disorder. Similarly, the most seminal and thoughtful research and literature on ASDs (Uta Frith, Lorna Wing, Simon Baron-Cohen, etc.) does not assert that individuals with ASDs lack empathy.

I have asked individuals with ASDs about empathy, and they have described to me feeling extremely empathetic at times; in fact, several of these individuals have mentioned that they feel “too sensitive” towards others. One young man on the spectrum noted that when he sees someone experience something negative, such as falling down and hurting themselves, he winces as he literally “feels their pain.” However, he noted, his empathy is only evoked when he, at some point, has experienced the same situation or same evident emotion as the person with whom he is empathizing. If someone is experiencing something he cannot relate to or understand from his own past experience, he does not “know to empathize” and then may appear insensitive.

This young man’s insight leads me to believe that many people misunderstand (Simon Baron-Cohen’s) “theory of mind” deficiencies in people with autism as a lack of empathy. “Theory of mind”, or ToM, is the theory that we have the capability to attribute mental states to ourselves and to others (or, as the saying goes, to put ourselves in another’s shoes). Theory of mind ability constitutes the first step in empathy. While people with ASDs may struggle with theory of mind ability (probably due to a lower-than-usual amount of mirror neurons in the brain, which facilitate ToM), they do possess at least some of this ability, and studies have shown that they can and do develop ToM abilities over time (in fact, studies show that many individuals with Asperger’s develop ToM abilities nearly on par with most neurotypical adults by adulthood). Therefore, a person with an ASD (especially as a child) may struggle to understand someone else's mental state, but once they do, they can certainly feel for that person.

Literature that suggests that individuals with ASDs lack empathy is not only incorrect, it is dangerous, because it may lead to the belief the people with autism are sociopathic and not safe to have around. Furthermore, it is simply untrue and undercuts the incredible sensitivity towards others that many people with ASDs possess. Over the last couple of months, I have been conducting research with young adults with ASDs in college, and, as a college professor, I can confidently assert that this group of students have been among the most thoughtful, and empathetic, that I have met.

Is it ok to grieve again?

Since our last blog about handling the holidays, we have heard from many readers. Some were doing well and enjoying time with their children, others experienced sadness and some told us about mixed feelings of joy and sorrow. One reader asked us if it was ok to grieve again. No one asked if it was ok to be happy.

Since the question about continued grieving comes up frequently, we are taking it up here, and we welcome readers to share their thoughts and experiences on our blog or Facebook wall, or just respond by email to therapist@alternativechoices.com.

Answer: From Dr. Cindy Ariel:

The sadness left by grief never goes away. At any moment, I am able to look into my grief spots and feel the sadness and emptiness left there by significant losses. Losing the child of our dreams can certainly be one such loss.

There are many losses through life, and seen in a larger perspective, each loss adds meaning and depth to our lives. We all feel grief at various points in our lives but that does not minimize our times of happiness and joy. In fact, grief magnifies joy because happiness is so much sweeter after experiencing sadness.

One strategy is to do extra things that make us joyful so that the happiness in our lives balances or hopefully even outweighs the sorrow. It does not make the sorrow go away but it surrounds it with a cushion of good feelings and makes it easier to manage.

As we come to accept where our children are actually at and who they really are, we dream new dreams for them and for our families and these new dreams are much more likely to be based upon reality and therefore are more likely to be attainable.

When we once dreamed about having philosophical discussions with our child, we may now simply long to hear them call us mommy or daddy or say I love you…just once. Our dreams may involve easing up on hearing our child talk and focusing instead on just having her look into our eyes and smile. When such new goals are reached, it is joyful indeed. This is not to say that sometimes we don’t still wish or long for that once dreamed of discussion. When we focus there, we may always feel sadness that those discussions may never take place.

Dreaming new dreams and rejoicing in new goals helps us feel happier in this new moment with the child we actually have. Nobody wants any hardship to befall their children. We may feel disappointment, guilt, and sadness when our child has a challenge that will make life, which is already difficult, even more so. We get through the adversity and we love our children even as we grieve and we celebrate their unique lives and the time we are given to be together.

From Dr. Robert Naseef:

Grief may come and take you places you never expected to go. This is a normal and natural. It comes and goes. First of all realize that you are not alone when your heart aches. So go ahead and look at your grief. Observe your thoughts and feelings. Notice any sensations in your body. Accept them and be kind to yourself about having them. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. I have learned through my son’s 30 years that you don’t have to lie to yourself. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life.

It is natural to wonder about what might have been especially around the holidays. Your longing for the child of your dreams or a typical life for you and your family may endure. You have to learn to live with that yearning, and you can do that, but you don’t have to lie to yourself about how hard this can be. As Kahlil Gibran reminds us, “joy and sorrow are inseparable . . . together they come and when one sits alone with you . . . remember that the other is asleep upon your bed.”

Secondly, try to accept yourself as you are—a kind and loving parent doing your best with your child who is undoubtedly doing his or her best under trying conditions. A perfectly lovely child with special needs can be very hard to be with because of their behavioral, social, or communication issues. When you love somebody, you love to be with them. When you don’t feel that and think you should, the guilt comes up, and your heart aches. As you can accept yourself in a kind and compassionate way, your heart heals, and then the grief lightens. Acceptance can bring change.

Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family. This is the gateway to love and happiness. 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. That deep connection is alive inside you. As you rekindle it, you can actually experience very deep happiness. Let us hear from you about your experiences.

Women on the Autism Spectrum

Girls and woman with ASDs face unique challenges and are often misunderstood (and misdiagnosed). Check out this article by a woman with an ASD, Ruth Elaine Hane, on the thoughts and experiences of women on the spectrum: http://www.autismsupportnetwork.com/news/thoughts-and-ideas-woman-asd2358

Thanks to the AC Blog reader who informed us about this article!