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.