HISTORICAL PERSPECTIVES ON AUTISM
HOW AUTISM HAS BEEN UNDERSTOOD (1911–2016)
It would be an understatement to say that a wide range of hypotheses are used to account for autism-related disorders. Historically, the disorders have been understood mainly through psychoanalytical, neurobiological, genetic, and executive function approaches. There have, however, also been combinations of unrelated approaches.
HISTORICAL DEFINITION OF AUTISM
Bleuler defined the concept of autism in 1911, believing it was not a separate condition, but one of the secondary effects of schizophrenia.
Thirty-two years later, in 1943, Leo Kanner described autism as a rare psychiatric disorder with onset before age two-and-a-half years of age. Kanner’s definition and his subsequent description of its main distinguishing characteristics made autism a medical entity (Kozloff, 1998). As a new psychiatric medical diagnosis, the practitioners of the day offered as treatment psychoanalytic forms of therapy.
By the late 1950s, current thinking about autism was changing. In 1959, for example, Bender characterized autism not as an inborn impairment of the central nervous system, but as a defensive reaction to one—a disorder whose basis is an inability to shield self from unbearable anxiety. A year later, C.E. Benda wrote that the autistic child is “not mentally retarded in the ordinary sense of the word, but rather is a child with an inadequate form of mentation which manifests itself in the inability to handle symbolic forms and assume an abstract attitude.”
During the mid-1960s, understanding of autism continued to shift. In 1964, Bernard Rimland published a biogenic theory of autism: “The basis of the autism syndrome is the child’s impaired ability to relate new stimuli to remembered experience. Hence, the child does not use speech to communicate because he cannot symbolize or abstract from concrete particulars. And he is unresponsive to his parents because he does not associate them with previous pleasurable experiences.” Rimland thought that the underlying cause of autism was an impairment in the brain’s reticular formation—the part of the brain believed by many to link sensory input and prior content.
During the 1960s and into the 1970s, researchers offered biogenic explanations of autism—theories focusing on biochemical and metabolic anomalies in people with autism, or on the role in the development of autism of various problems of the central nervous system. Autism was beginning to be viewed as a neurological disorder. This viewpoint is still very much with us. Speaking at the 1999 National Conference of Autism, James Ball referred to autism as a complex developmental disability resulting from a neurological disorder that affects the functioning of the brain.
That year, clinical practice guidelines on autism published by New York State referred to it as a part of a clinical spectrum of pervasive developmental disorders: “Autism is a neurobehavioral syndrome caused by dysfunction in the central nervous system, which leads to disordered development.”
Beginning in the mid-1960s and carrying forward through the 1980s to 2000, researchers have turned to genetics, searching for the genetic error, perhaps inherited, underlying the development of autism. The roles of several candidate genes are being studied. In the 1990s, other approaches to autism were described, including the executive functions approach, the hypothesis that autism results from early life brain damage, the theory that autism is the result of neuroimmune dysfunction, and that it is the result of autistic enterocolotitis, which may be linked with the measles, mumps, and rubella vaccination.
Resources and links—You can reach Dr. Kaplan at US Autism and Asperger’s Association by calling 1-888-9AUTISM or by writing drlkaplan@usautism.org.
Editor’s Addendum: Autism in History 2000–2016
By Jonathan Alderson, Ed.M.
Since the new millennium, our understanding of ASD has profited from remarkable advances in genetic research. In 2003, the Human Genome Project (HGP) was declared complete, and for the first time in human history scientists identified the entire human DNA sequence. Leveraging this game-changing data to investigate autism, Dr. Stephen Scherer and Dr. Ryan Yuen at The Hospital for Sick Children in Toronto, Ontario, Canada used one of the world’s largest supercomputers, in conjunction with Google, BGI-Shenzhen (China), and with major funding from Autism Speaks, to analyze the whole genomes of 200 families. These 600 fully sequenced genomes came from MSSNG (pronounced “missing”), the world’s largest collection of autism genomes and a collaborative effort of Autism Speaks and The Hospital for Sick Children (SickKids) in Toronto. The Autism Speaks MSSNG project has made this invaluable resource of the genomes of families with autism an open source and available to collaborating researchers around the world who are searching for the causes of and treatments for autism.
Many other researchers in medicine and human biology have concentrated on understanding ASD. In 2015, Dr. Derrick MacFabe, Director of the Kilee Patchell-Evans Autism Research Group, was invited to present his groundbreaking findings at the renowned Nobel Forum Symposium. Dr. MacFabe’s focus on the gut-brain connection has produced top-tier scientific research that confirms organic byproducts, short chain fatty acids produced by intestinal bacteria that can act as “epigenetic modulators” affecting many of the genes that Dr. Scherer at SickKids in Toronto has associated with autism. Pieces of the puzzle are being connected by these pioneers. It should also be noted that more than at any other time in history, hundreds of millions of dollars are being invested in autism research by governments and by private donors including seriously dedicated individuals like David Patchell-Evans, founder and CEO of GoodLife Fitness and cofoundere of the Kilee Patchell-Evans Autism Research Group, who has donated more than five million dollars to the research team, named after his daughter, a young adult with autism.
More recently, in 2016, Dr. Evdokia Anagnostou and her team at Holland Bloorview Research Institute in Toronto have been investigating the possible beneficial effects of intranasal oxytocin on anxiety and social-receptivity in people diagnosed with autism. Pharmacological research and drug treatments for autistic symptoms is advancing in part because of new genetic information and understanding.
Since 2000, the update in diagnostic criteria of autism has been another important and major shift in the field of autism. The Diagnostic and Statistical Manual-Fifth Edition (DSM-5) was released in 2013, delivering revisions to the criteria needed for a diagnosis of what is now called Autism Spectrum Disorder. Previously, the DSM-IV (4) included Autism as one of several Pervasive Developmental Disorders (PDD) including Asperger’s. In the fifth revision, these PDDs were all combined under one umbrella-term Autism Spectrum Disorder. A diagnosing physician can add a severity level qualifier such as “moderate” or “severe” to distinguish along the spectrum and to determine the kinds and amounts of funding and supports a child can receive.
Perhaps the biggest debate that this redefining of autism triggered was the removal of Asperger’s as a separate diagnosis. The ramifications of this for the thousands of children and adults formerly diagnosed with Asperger’s are yet to be seen. Questions and concerns about access to services, recognition of disability, and all those who identify as and have formed “Aspie” communities are left to find their own way.
The field of autism treatment has seen a shift in the “style” of ABA services from a heavy emphasis and adherence to the more rigid Discrete Trial Training (DTT) toward programs emphasizing broader generalization, more socialization, and playfulness, like Natural Environment Training (NET), Pivotal Response Training (PRT), and Positive behavior Support. ABA-based strategies for Autism Spectrum Disorder continue to be the most researched, available, and commonly used treatments for autism globally. This has been in part supported by the growing number of professionals accredited with the BCBA training and certification.
Outside of the ABA realm, a growing number of multidiscplinary autism treatment centers have opened since 2000. Recognizing that most families choose to “blend” a variety of therapies and professional services including speech therapy and occupational therapy along with behavioral intervention, among others, centers in which these services are closely located under one roof and are well coordinated have gained popularity. The Pacific Autism Family Centre in Vancouver, Canada, and Integrated Services for Autism and Neurodevelopmental Disorders (ISAND) in Toronto, Canada, are two examples of this trend. Building on the multidisciplinary concept, the Integrated Multi-Treatment Intervention (IMTI) is an approach that takes into account the order and timing of blending various approaches into highly customized treatment programs for individual children. (Disclosure Note: This author is the Founder/ Director of the IMTI program). Although there is a dearth of research on integrating different approaches and services, anecdotal evidence of significant improvements in development suggests multidisciplinary models may be a next evolution in autism treatment.
On this note, in July 2014, another evolution in the field of autism was printed in the New York Times when it reported the results of a study by Dr. Deborah Fein of the University of Connecticut along with a second study by the well-regarded Dr. Catherine Lord, who found that about 9 percent of people diagnosed with autism will at some point no longer meet the diagnostic criteria. Autism has for decades been considered, and remains to date, an incurable lifelong disorder. The notion of recovery has been dismissed vehemently as impossible, false hope and explained away as misdiagnosis. Truly, this “recovery” research, along with epigenetic and biomedical research, and newly emerging models of integrated treatments, are all challenging the status quo and pushing us all to challenge our belief and to hopefully see even more possibility for positive life outcomes of all those with ASD whom we love and for whom want the very best.
References
1. Press, New York, 1998.
2. Smith N., Tsimpli I.: The Mind of the Savant: Language, Learning and Modularity. Oxford, Blackwell, 1995.
3. Viscott D.: A musical idiot-savant. Psychiatry 1970; 33:494–515.
4. Phillips A.: Talented Imbeciles. 1930 Psychological Clinics 18:246–255.
5. Clark T.: The Application of Savant and Splinter Skills in the Autistic Population Through Curriculum Design: A Longitudinal Multiple-Replication Study. Unpublished Doctoral Thesis, The University of South Wales, School of Education Studies.
6. Donnelly J.A., Altman R.: The Autistic Savant: Recognizing and serving the gifted student with autism. Roeper Review 1994; 16:252–255.
7. Ockelford A.: Sound Moves: Music in the education of children and young people who are visually impaired and have learning disabilities. London, Royal Institute for the Blind, 1988.
8. Rancer S.: Perfect Pitch and Relative Pitch: How to identify & test for the phenomena: a guide for music teachers, music therapists and parents. Self-published. SusanRMT@aol.com.
9. Grandin T.: Thinking in Pictures And Other Reports From My Life With Autism. Vintage Books, New York, 1995.
10. Grandin T.: Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Scribner, New York, 2005.
11. Grandin T., Duffy K.: Developing Talents: Careers for Individuals with Asperger’s Syndrome and High Functioning Autism. Autism Asperger’s Publishing Company, Shawnee Mission, KS 2004.
12. Conturo, T., Nicolas E., Cull T., Akbudak E., Snyder A.Z., Shimony J.S., McKinstry R.C., Burton, H., Raichle E.: Tracking neuronal fiber pathways in the living human brain. Proc. Natl. Acad. Sci 1999; 10422–101427.
Contributing Author Lawrence P. Kaplan, Ph.D., Health Administration and Research with an emphasis in autism spectrum disorders, Kennedy-Western University—Dr. Kaplan is the Executive Director of US Autism and Asperger’s Association, Inc., a national association dedicated to enhancing the quality of life of individuals and their families/caregivers touched by autism spectrum disorders by providing educational and family support through conferences/seminars and published and electronic mediums. Dr. Kaplan is the author of Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes.
Jonathan Alderson, Ed.M., is an autism treatment specialist and founder of the innovative Integrated Multi-Treatment Intervention Program (www.IMTI.ca). A graduate of Harvard University, with experience as a Curriculum Specialist Coordinator with Teach for America, he trained at the Autism Treatment Center of America in Massachusetts and worked as Administrator and senior family trainer in their Son-Rise Program. He has worked with over 3000 children and families. Now based in Toronto, he is a contributor for the Huffington Post, a member of the Seneca College behavioral Sciences Advisory Committee, and Cochair of the Young Professionals for Autism Speaks Canada Advisory Board. He has lectured on his multidisciplinary approach to autism treatment throughout Canada, the USA, England, Ireland, Holland, Spain, Australia, Israel, and Mexico. He is the author of Challenging the Myths of Autism, which has inspired educators and parents to consider a radical reframing of how we think about and treat people diagnosed with autism. His book has been honored with the Mom’s Choice Gold Award, the American Non-Fiction Authors’ Association Silver award, and the 2012 International Book Award for Best Parent-Resource.
MOVING PAST HISTORICAL STEREOTYPES OF AUTISM
The medical pathologist focuses the microscope to sharpen his view on the odd-looking cells. Using a special stain to color them, with a closer look, he positively identifies adenocarcinoma. There’s no mystery or guess work. The cells meet the globally accepted characteristics of this well-defined type of cancer. Within a few hours, the family is called into the doctor’s office for the devastating news. At the same time, he is able to give them clear treatment options, answer their questions, and explain the statistical probability of beating it.
In a different part of the hospital, a less certain diagnosis is being made with an even less certain course of treatment. Unlike the pathologist staring straight at the cancer cells, autism is not a cell we can see. We can’t measure it like insulin in blood for diabetes or as a biomarker in urine. Autism doesn’t have a certain temperature like a fever or a specific blood pressure. Instead, autism is made up of a group of behavioral symptoms that the doctor observes and then decides, subjectively, if they look “autistic enough.” It’s not uncommon for parents to get two different opinions about the severity of their child’s autism or even if it’s autism at all.
One boy is already falling well behind his peers. He can speak but doesn’t have conversations, and he doesn’t play with toys typically the way his peers do. He lines up any objects he finds in rows, and if someone moves them, he tantrums as if his world has been destroyed. The psychiatrist is looking for a specific yet broad set of behaviors (or absence of typically present behavior) that may add up to the necessary group of symptoms for a diagnosis. It’s a complex process. Typically, a diagnosing physician or psychologist has a fairly limited time to observe a young three-year-old’s range of behaviors. In some cases, an hour or less. They follow well-defined definitions from the DSM-5 and use standardized screening assessments like the M-CHAT-R (Modified Checklist for Autism in Toddlers Revised). Some of the best physicians I know will take up to as many as three hours and will work in tandem with a team including speech therapist and physical therapist. Even with this rigor, the diagnosis of autism is behavioral and subjective.
At the end of the diagnostic process, the psychiatrist writes down Autism Spectrum Disorder (ASD) on a form followed by “moderate” in parentheses. She says she can’t predict how far the boy will develop. The prognosis of ASD is uncertain. The parents are devastated. She offers support and hands them a list of resources with phone numbers to call to get their son on waiting lists for services as soon as possible. As they leave, a thousand questions flood their minds.
Unlike cancer, autism is still an enigma. What causes it? How is it treated? Despite promising new research in epigenetics, there is no consensus. What’s more, the criteria for diagnosing autism have changed over time and are still being debated to this day. In other words, there still isn’t global consensus about what autism even is.
The unsolved nature of autism and lack of consensus has provided the perfect environment for a Wild West of theories, treatments, and ultimately for myths to exist, unchallenged.
For example, is the incidence of autism on the rise? Autism affects as many as 1 child in 45. There are an estimated over 200,000 children with the disorder in Canada alone. More children will be diagnosed this year with autism than AIDS, cancer, and diabetes combined. Rates of diagnosis have gone up dramatically, over the past ten years especially. This fact alone is a widely debated issue. Some say the increase is due to the definition of autism being broadened to include more kids with milder forms of autism who, in the past, would have been labeled with PDD or Asperger’s. Others believe rates have increased because of vaccines or because the environment is getting more toxic. There is so little consensus, entire books are written for and against each of these theories, packed with “science,” some more credible than others, and real-life anecdotes to support their compelling side of the argument. Again, the vacuum created by the lack of certain knowledge about autism has been filled by some truths, some half-truths, and some untruths.
Another example of lack of consensus leading to myths is the autism-vaccine link. This is hands-down one of the most debated and contentious issues. The arguments aren’t explained well in the media, and so headlines like “Vaccines cause autism” have triggered more fear than good. Some researchers like Dr. Andrew Wakfield have proposed that the measles virus in the Measles, Mumps, and Rubella (MMR) vaccine finds its way into the intestines and causes an inflamed bowel disease similar to Crohn’s Disease. According to the theory, the inflammation causes leaks of proteins back into the blood that affect the brain, causing autism. As chronicled by Paul Offit, in Autism’s False Profits, Wakefield’s research has now been harshly criticized and discredited most importantly by his own medical community. Offit and others call Wakefield’s MMR theory a damaging myth. Indeed, a main thrust for me behind igniting the conversation about the myths of autism is witnessing the negative impacts they can have on this vulnerable population and their families.
However, as enigmatic as autism itself, there are often two or three sides to most theories concerning autism. In Evidence of Harm, New York Times reporter David Kirby presents compelling reports and data that vilify drug companies and supports Dr. Wakefield’s vaccine-autism link. (Recently, Wakefiled authored his comprehensive self-defense Callous Disregard.) Sadly, parents, who need the most direction and support, are left to sort through mountains of conflicting information while children’s health is at stake. The number of children getting the MMR has decreased, and, as a direct result, the number of children infected with the measles virus has increased. Outbreaks of measles have resurfaced in underimmunized communities (putting children at risk for brain injury and even death), demonstrating the stakes are high of sorting myth from truth.
Most parents, more than anyone, are desperate to understand what caused their child’s autism. Thankfully the “Refrigerator Mother” theory once promoted by Bruno Bettelheim, who claimed unloving cold-hearted parents caused their child to retreat into autism, was completely discredited and shamed out of his career. Recently, there has been a flurry of genetic studies, and over 100 genes have been identified that, through interactions with the environment (Epigenetics), might make a child more susceptible to developing symptoms. However, even the most advanced genetic studies have only been able to find links that account for less than 20 percent of the population. There are still no certain answers for parents searching for the cause.
While experts cannot agree on what causes autism, there’s also no consensus on exactly how to treat it. By far, the most widely promoted and researched approach is applied behavioral analysis in behavioral therapy. But since children diagnosed with autism have multiple learning and behavior challenges, there is no one treatment or therapy that can deal with all of their needs. As a result, there has been a huge wide-open market for almost any type of service or product to apply itself to treating autism. Treatments on offer range from swimming with dolphins to infrared saunas, cod liver oil, intensive desk-work drills, skin brushing regimes, mineral clay baths, dance classes, video games, and pet dogs. The number of options available that parents have to choose from is overwhelming. Some of these are evidence-based on science. Others seem more fiction than fact.
As fad theories and bogus treatments come and go, there is a group of characterizations about people with autism that has unfortunately endured. Through the din of debates about genes and vaccines, I think we sometimes forget that we are talking about real people, a population with a very wide-range of strengths and challenges and personalities.
How we talk about people with autism and how we characterize them impact how we treat them.
• The belief that autistic children can’t share affection with others has led therapist to use hug or holding therapy where children are held tightly, often against their will, for hours at a time. Screaming and trying to escape, some have been held down by several adults who believe they can force a healthier bond to form.
• The belief that the majority of autistic children are mentally retarded led to thousands being placed in mental institutions and pushed aside in special-education classrooms. Low expectations and condescending attitudes resulted in less opportunity for children with autism to learn, participate, and be included fully with others.
• The belief that people diagnosed with autism don’t have imagination blinds us from seeing their different kinds of creativity and unique thinking capacities. Unusual interests, play, and behavior are judged as inappropriate, instead of as creative and valued, and are shut down.
These perennial inaccurate descriptions, among many others, are what I call the myths of autism. In my book Challenging the Myths of Autism (Harper-Collins, 2011), I examine the origin, history, and the evidence that reframes each of seven common descriptors of people with autism. It’s true that each is rooted in some observable evidence in some individuals with autism. However, there are many different and equally plausible interpretations.
Over 25 years I have worked with hundreds of families and spent hundreds of hours in therapy sessions with children diagnosed across the autism spectrum. The more children I meet, the more diversity I see. The autism described in books, on TV, and in the media is an averaged caricature that doesn’t match what I witness in reality. Why, then, do certain character trait descriptions persist as myths? How do they influence research, policy, treatment, and our personal relations with people with autism?
In the same way that bogus treatments can mislead parents and give false hope, these caricatures of people with autism mislead parents, therapists, and the general public to underestimate the potential of children with autism. They inhibit us from recognizing the unlimited possibilities for interaction with each unique person with autism. What we believe about a person with autism is the lens through which we greet and interact with them.
In our education and interactions with these special people, could we put aside definitions and celebrate uniqueness? Choosing to see possibility can lead to hope and can reinvigorate patience and acceptance. A young mother who is told that “if an autistic child doesn’t learn to speak before the age of five he will likely never talk” loses hope. Fear and anxiety become her focus. Impatience and judgment manifest. By the time the child reaches the age of five, if he is not yet talking, the mother is now less likely to hear her child’s speech-like sounds, and even less likely to interpret any she does hear as attempts to communicate. The myth has become fact. However, there is hope. Much hope. Examples of children who learned to speak after the five-year barrier and those who learned alternate modes of communication break the myth.
Challenging the Myths of Autism reveals much more of this hope. It provokes an examination of our beliefs and helps us see more possibilities in people with autism. In fact, the discussion has already been ignited. Many parents and professionals are forces of change, participating in “awareness” events, talking differently about autism, and helping to write a new more hopeful and inclusive history of autism.
Jonathan Alderson, Ed.M., is an autism treatment specialist and founder of the innovative Integrated Multi-Treatment Intervention Program (www.IMTI.ca). A graduate of Harvard University, with experience as a Curriculum Specialist Coordinator with Teach for America, he trained at the Autism Treatment Center of America in Massachusetts and worked as Administrator and senior family trainer in their Son-Rise Program. He has worked with over 3000 children and families. Now based in Toronto, he is a contributor for the Huffington Post, a member of the Seneca College behavioral Sciences Advisory Committee, and Cochair of the Young Professionals for Autism Speaks Canada Advisory Board. He has lectured on his multidisciplinary approach to autism treatment throughout Canada, the USA, England, Ireland, Holland, Spain, Australia, Israel, and Mexico. He is the author of Challenging the Myths of Autism, which has inspired educators and parents to consider a radical reframing of how we think about and treat people diagnosed with autism. His book has been honored with the Mom’s Choice Gold Award, the American Non-Fiction Authors’ Association Silver award, and the 2012 International Book Award for Best Parent-Resource.