A Pediatrician’s Insight on Autism

67_cover_finalsmallLILIPOH Interviews Michael Allen, MD

LILIPOH: Please give us a short introduction to your practice.

Dr. Allen: I have been a pediatrician for 21 years, and I am board certified in anthroposophic medicine, holistic medicine, and traditional pediatrics. In 2008, my wife and I set up an anthroposophic healing center near Fair Oaks, California, The Center for Living Health. We work with Susan Johnson, MD, and William Bento, PhD, as well as eurythmy, craniosacral, art, and extra lesson therapists.

LILIPOH: Do you see an increasing number of autistic children in your practice?

Dr. Allen: Yes, I have seen a significant increase in the number of children with autism in my practice and in the world at large since the late 1990s.

LILIPOH: Could you please outline the basic characteristics of autism, or the spectrum that is currently described with this word. How has it changed over the last few years?

Dr. Allen: Autism spectrum disorders (ASD) are characterized by:

1. Social-interaction difficulties such as: failure to respond to their names, reduced interest in people, and delayed babbling. By toddlerhood, many children with autism have difficulty playing social games, don’t imitate the actions of others, and prefer to play alone. They may fail to seek comfort or to respond to parents' displays of anger or affection in typical ways.

2. Communication challenges. Young children with autism tend to be delayed in babbling and speaking and learning to use gestures, and exhibit an inability to understand body language, tone of voice, and expressions that aren’t meant to be taken literally. For example, even an adult with autism might interpret as sarcastic, “Oh, that's just great!” as meaning it really is great.

3. A tendency to engage in repetitive behaviors. Common repetitive behaviors include hand flapping, rocking, jumping and twirling, arranging and rearranging objects, and repeating sounds, words, or phrases. Sometimes the repetitive behavior is self-stimulating, such as wiggling fingers in front of the eyes.

However, symptoms and their severity vary widely across these three core areas. Taken together, they may result in relatively mild challenges for someone on the high- functioning end of the autism spectrum. For others, symptoms may be more severe, as when repetitive behaviors and lack of spoken language interfere with everyday life.

Historically, according to the American Psychological Association, the term autism was first coined by Swiss psychiatrist, Paul Eugen Bleuler in 1908. He used it to describe a schizophrenic patient who had withdrawn into his own world. The root of the word autism is from the Greek "autos" which means "self." Combine that with the Greek suffix "ismos" which means “action or state of being,” and you get an original root meaning that roughly translates to a state of being absorbed by one's self or withdrawn within oneself. This makes sense today because people with autism often seem to be lost in themselves.

The pioneers in research into autism were Hans Asperger and Leo Kanner, who worked separately in the 1940s. The American child psychiatrist, Leo Kanner, studied children who had features of difficulties in social interactions, difficulty in adapting to changes in routines, good memory, sensitivity to stimuli (especially sound), resistance and allergies to food, good intellectual potential, echolalia or propensity to repeat words of the speaker, and difficulties in spontaneous activity. These were children who were severely affected. Hans Asperger studied a different group of children. His children also resembled those Kanner studied but they differed in one important respect: the children he studied did not have echolalia as a linguistic problem. Rather, they spoke like grownups. He also mentioned that many of the children were clumsy and different from normal children in terms of fine motor skills. These were very able children.

In addition, beginning around the 1940s, parents of autistic children began receiving blame for their child's autism, particularly the mothers, who were called "refrigerator mothers.” The whole idea behind the refrigerator mother concept was that children become autistic because of the mother’s frigidity. The mothers were supposedly "cold" to their child and didn't interact or play with them and didn't cuddle them. Of course, we now know that this is a ridiculous theory and the product of doctors being too quick to jump to a conclusion.

It wasn't until the 1960s that autism was established as a separate disorder, distinguished from others such as schizophrenia and retardation. Up to then, autism was treated very similarly to those disorders. From the 1960s through the 1970s, research into treatments for autism focused on medications such as LSD, electric shock, and behavioral change techniques. The latter relied on pain and punishment. During the 1980s and 1990s, the role of behavioral therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions. Other treatments were added as needed. Currently, the cornerstone of autism therapy is behavioral therapy.

The DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, 4th ed, 1994, the current edition of American psychiatry's diagnostic guide) identified a set of separate Pervasive Developmental Disorders that are considered “autism spectrum disorders” (ASDs). These include Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rett’s Syndrome, and Childhood Disintegrative Disorder.

However, one of the most significant changes with the new DSM-V, which will be formally unveiled in May 2013, is that the separate diagnostic labels of Autistic Disorder, Asperger’s Disorder, PDD-NOS, and Childhood Disintegrative Disorder, will be replaced by one umbrella term “Autism Spectrum Disorder.” The new Autism Spectrum Disorder will have new criteria to qualify, and Rett’s Syndrome is no longer included. These changes are already sparking quite a controversy in the autism community.

LILIPOH: Is the increase in the number of diagnosed “cases” a function of improved diagnosis, or could it be linked to increased stimulation, changes in the ability of teachers—or is there a basic genetic change?

Dr. Allen: There is a real increase in the number of children with autism. It is true that we are all now better at recognizing them, and even at younger ages, but that is a direct result of the epidemic of new cases. In 1960, the prevalence of autism was 1:4000. In 2000 it was 1:2000. Now it is 1:88 children in the United States.

When I first started practicing in 1992, I worked in a large, traditional pediatric practice where we would see 250 or more kids every day. In a practice that large, you get an accurate pulse on the health, or lack of it, in the community at large. Trends in health are identifiable, such as the increase in diabetes and other autoimmune disorders in children that we have witnessed in our practice. We were not seeing these children with ASD in the early 1990s—autism was still rare!

Then, in the late 1990s, I started to notice more children who were not incarnating in a typical way. These children lacked sparkle in their eyes, and instead, there was dullness there, as if covered with a veil. These youngsters did not regard the human face with recognition and connection, and smile, but simply looked at me as if I were one of the many inanimate objects in the room. I was deeply moved. It made such an impact on me that 15 years later, I can still remember the first child I saw with what would later be diagnosed as autism. When I first started seeing these children, my colleagues and I were unable to diagnose them, but I would make a note in their chart about their eyes. Shortly thereafter, autism became very familiar to me and to the rest of the world.

The increase in diagnosis of autism is not simply the result of overstimulation (and/or other reactive disorders that might reveal mild symptoms similar to ASD), or the inability of teachers. True, teachers are having a hard time with these children, but it is not because they are any less capable than teachers of the past. It is because there is an epidemic of these children who are not incarnating typically, and we are all still learning about their gifts and challenges. A genetic component has been identified, as there are more mutations in the genetic make-up of kids later diagnosed with autism versus kids that are not, when testing cord blood samples. However, this is true in some of the kids diagnosed with autism, but not all of them.

LILIPOH: What treatments have been found to be supportive in a child’s life after the diagnosis (therapy, stimulation, art, music, physical activity, medications, etc.)?

Dr. Allen: Each child or adult with autism is unique, so each autism intervention plan should be tailored to address specific needs. Traditional intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, ADD/ADHD, anxiety, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning, and related behaviors.

This can be traditionally done as follows: sleep disturbance (healthy sleep training, melatonin, or medications); ADD/ADHD (medication); anxiety (Cognitive Behavioral Therapy CBT and/or medications); seizures (medication) and gastrointestinal (GI) distress (dairy and gluten sensitivity/allergy—food restriction, probiotics). Objective scientific studies have confirmed the benefits of two methods of methods of comprehensive behavioral early intervention. They are the Lovaas Model based on Applied Behavioral Analysis (ABA) and the Early Start Denver Model.

Studies indicate that early intensive behavioral intervention improves learning, communication and social skills in young children with autism. While the outcomes of early intervention vary, all children benefit. Researchers have developed a number of effective early intervention models that work best if the intervention focuses on the core areas affected by autism (social skills, language and communication, imitation, play skills, daily living, and motor skills); if it provides the child with opportunities to interact with typically developing peers; and if the program actively engages parents in the intervention, both in decision making and the delivery of treatment.

Parents and therapists also report success with other commonly used behavioral therapies, including music therapy, floor time, pivotal response therapy, and verbal behavior therapy. Anthroposophic treatments that have been found to be beneficial include anthroposophic remedies, eurythmy, rhythmical massage, art therapy, and speech therapy. Rudolf Steiner said, in Education for Special Needs,(1) that whenever we give treatment to a handicapped child, we are intervening in karma, and that this work of the gods we must undertake as a benefit to us all.

The basic lessons we learn from our Waldorf kindergarten teachers—the benefits of adequate warmth, sleep, decreased media and overstimulation and good nutrition— are instrumental in helping all children, especially those with autism.

Growing evidence suggests that a small minority of persons with autism progress to the point where they no longer meet the criteria for a diagnosis of autism spectrum disorder (ASD). Various theories exist as to why this happens. They include the possibility of an initial misdiagnosis, the possibility that some children mature out of certain forms of autism and the possibility that successful treatment can, in some instances, produce outcomes that no longer meet the criteria for an autism diagnosis. I believe that when a child has an interruption in their incarnation process, they may reveal symptoms that resemble ASD. If we can meet them and support them anthroposophically, we can intervene in their karma and help them to heal.

LILIPOH: How can an anthroposophic medical outlook help us to understand autism?

Dr. Allen: Autism can be looked at as an atypical incarnation process. This specific “abnormality” reveals itself in the pattern of symptoms we call autism. Yet, one should ask, what is the purpose of autism? In anthroposophy, Steiner said that we prepare for our upcoming incarnation in the time between death and rebirth. The interweaving of the cosmos, the individual soul, and our specific karma come together as we make plans for what we want to work on in our upcoming incarnation.

Is the purpose of autism one of altruism, to serve as a sacrificial mirror (see below) or as a springboard for the individual soul to form a future earthly life, as Steiner indicated in his book, Education for Special Needs?

The essence of autism is a disharmony of the ego function. The ego does not engage the lower organization (metabolism) sufficiently from the periphery inward. This is reflected into the consciousness pole, as the centering of the ego in the upper organization is also deficient. The disturbed relationship of the ego results in a weakened etheric stream from the lower organization, which is too little for a healthy relationship to the soul forces. Thus, thinking, feeling, and willing cannot be brought together. 2 In a mild case, this might manifest as a bright child with autism who is hyper-focused on one topic but has difficulties with others, can’t read social cues, can’t feel love, has delayed speech, and repeatedly engages in hand-flapping. A child may come into this life with autism, or autism may develp from a vaccine or other physical injury, either to the brain or to the gut. If the injury is in the brain, then it causes a reflected injury in the gut, or if the original injury is in the gut, then the reflected dysfunction occurs in the brain.

LILIPOH: What are the social/spiritual implications arising from the fact that so many children are being diagnosed with autism?

Dr. Allen: According to educator Eugene Schwartz, if we look at illnesses as mirrors for the age, we see in our current mirror, indifference, social isolation, timidity, and lack of empathy. In autism we find individuals who share these “inbreathing” characteristics, and serve as sacrificial mirrors to reflect our time.

Ours is a time of materialism. This excessive materialism distracts us from our spiritual development. People with autism are handicapped in a way that prevents their spiritual development. This is a sign of our times. The purpose of autism is to balance out this excessive materialism. Thus autism can be seen as both the result of, and the remedy for, excessive materialism. We are suffering from the inability to develop spiritually and deeply connect with our fellow human beings. Autism reveals this to us, and gives us the opportunity to step away from ourselves and our immersion in the materialistic world, and focus on helping our children with autism and the world at large. We have to be sensitive, caring, and loving enough to open ourselves to the gifts that these individuals bring to the world. With healthy empathy and tolerance, we can support them and learn the meaning and balance of their incarnation. In the process, we learn to strive for healthy social connection and continue developing our potential as spiritual human beings.

LILIPOH: Can you explain what Rudolf Steiner and Karl Koenig, MD, said about what these individuals bring to their incarnation?

Dr. Allen: People who are handicapped bring in karmic blessings and karmic work for parents, siblings, caregivers—anyone and everyone who has a relationship with them in any way. This is a real Christ healing impulse to learn social connection, and how to care for our fellow human beings. Each handicap brings a specific lesson for the individual, parents, family and community.

Rudolf Steiner once said that when we see a child with an “abnormality” and we immediately want to “fix” them, trying to get rid of the “abnormality,” we in fact are both not learning the lesson they bring, and might just be driving out a fragment of genius. I believe this is true, as my own son, Kieran, which means “beam of light,” came into this world as an angel —a wake-up call to put me and my family back on our spiritual path when we were lost in the sea of materialism.

He was born with cerebral palsy and later developed seizures. Conventional medications failed, so Kieran led me on a holistic journey, including my introduction to anthroposophy, as I searched for things to heal my son. What I discovered in the process is that they helped to heal me.

Kieran’s quality of life improved, and he remained with us long enough to complete our life lessons. Then, two weeks after his seventh birthday, he developed pneumonia and unexpectedly passed. This was the hardest lesson for me as a father, as a pediatrician, and as a human being, to learn. Yet, I was grateful for his teachings and for the awareness of his gift even during his lifetime. It was both the most difficult and the most gratifying experience of my life.

Kieran was a beam of light, an angel on this earth, who deeply touched everyone who was exposed to him. I believe that children with autism, like my son, are here to be our teachers.

LILIPOH: What happens to the parents? I understand that divorce rates are very high in families with children with autism. Are there resources to support the families?

Dr. Allen: Parents of children with autism are generally exhausted, isolated and frustrated. The physical, emotional and financial burdens are enormous, and friends and family shy away. However, the reported 80 percent divorce rate of parents with autistic children is erroneous. Recent studies have found that 64 percent of children with an autism spectrum disorder have two married biological or adoptive parents, while 65 percent of children who do not have an autism spectrum disorder had two parents. Another study revealed a 24 percent chance of divorce between autistic parents of autistic children versus a 14 percent chance of divorce between parents of non-autistic kids. Whichever study you believe is more correct, they are both much lower than 80 percent.

There are many resources available to families of autistic children and adults. These range from advocates to financial, diagnostic, books, diets, caregivers, support groups, social programs, education, parental support, blogs, and attorneys, etc. Some of these can be accessed through the Resource Guide by Autism Speaks (see below), that offers resources available specific to one’s state and zip code. www.autismspeaks.org/family-services/resource-guide

LILIPOH: What happens when autistic children grow up to be adults?

Dr. Allen: It all depends on their level of function and how well we've been able to help them to integrate with the world. A lot has to do with early intervention, understanding individuals with their specific gifts and challenges, and then putting enough support in place so that these individuals are able to reach outside of themselves, tolerate their surroundings and be able to interact with them.

Things generally improve as children with autism get older, yet nearly seven years after high school, 35 percent of autistic young adults still had no paid employment or education beyond high school. The statistics are dramatic: within a decade or so, more than 500,000 children diagnosed with autism will enter adulthood.

Some of them will have the less severe variants like Asperger’s syndrome or “high-functioning autism” and may be able to live more independent and fulfilling lives. But even this subgroup will require some support, and the needs of those with lower-functioning varieties of autism will be profound and constant as some will forever live in a supported environment, whether at home or in a group home, and will never hold a job.

There may be others who lead not only normal, but incredible lives, having so much to offer the world in the way of creativity and knowledge, as they share their gifts and passions, making the world a better place for all of us. We just have to be “open” to them, and to give them the opportunity without our traditional “limiting” boundaries.

LILIPOH: What research is happening that will let us project into the future?

Dr. Allen: Research is revealing that the risk of autism increases linearly with BOTH the age of the father AND the age of the mother at conception. Increased risk also happens with low folic acid levels, fever and flu during pregnancy, etc. There are both genetic and environmental factors currently being investigated. In addition, there is significant research being done on the gut-brain connection (which is supported by Steiner’s view of the interaction or reflection between the upper and lower forces).

An autism tsunami is on the way. With the numbers of children diagnosed with autism skyrocketing, we will soon have over half a million young adults 18 or older in the United States with autism. This is a global wake-up call!