Understanding Autism: Parents, Doctors, and the History of a Disorder

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Although some popular treatments may appear to be the result of a frantic search for solutions by desperate parents, it is important to remember that treatment-oriented approaches have also yielded reliable knowledge about autism.

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For example, the National Society for Autistic Children later the Autism Society of America was founded by Rimland and other parents in part to promote a then-new treatment possibility, applied behavior analysis, or the Lovaas technique. Although Ivar Lovaas 36 and his colleagues began their work in the late s, the widespread adoption of their techniques came in part because of the activism of parents who sought to obtain the best treatments for their children, often in opposition to those who argued that their children were untreatable.

Rimland, for example, promoted applied behavior analysis in talks to parents around the country based on his observation of sessions at the University of California, Los Angeles. While some parent-run autism organizations have focused on genetics research and behavioral therapy, the Autism Research Institute and its Defeat Autism Now!

The Autism Research Institute was also founded by Rimland, who was initially interested in the use of high-dose vitamin B 6 and magnesium as a treatment for autism; Defeat Autism Now! In the absence of simple medical interventions for autism, it is not surprising that families would turn to alternative medicine to help their children, learning of new treatments from an informal network of families as well as from listservs, the Internet, and searches of the medical literature.

One mother of a child with autism, Karyn Seroussi, 28 described how she treated her son with an elimination diet after hearing from her mother-in-law that her husband had begun talking as a child only after milk was removed from his diet. Such anecdotal reports can be powerful evidence for families considering new therapies, especially when the risks seem relatively small. Parents also turn to alternative medicine to address their children's medical problems, ranging from allergies and immune problems to sleep disturbances, hyperactivity, and gastrointestinal difficulties, as much as the core symptoms of autism.

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In addition to voicing questions about the relative importance of autistic symptoms and what are seen as comorbid conditions, parents of children with autism have long argued that there are clinically distinct subsets of children within the category of classic autistic disorder. Indeed, it was parents' insistence that their children had a variety of physical symptoms that led Andrew Wakefield, 50 a gastroenterologist then at the Royal Free Hospital in London, England, to investigate a group of children with significant intestinal pathological abnormalities in addition to developmental regression.

Parents have also expressed concerns about a relationship between the increasing number of vaccines in infancy and the increasing rates of autism diagnoses, particularly the potential of the ethylmercury-containing preservative thimerosal to act as a developmental neurotoxin. Physicians initially responded by postponing certain vaccines until thimerosal was removed 55 ; further research has not revealed any link to developmental disabilities, and a recent study 56 found that the removal of thimerosal from vaccines has not been associated with any changes in autism prevalence.

The same Institute of Medicine review committee that examined the evidence linking the measles-mumps-rubella vaccine to autism also confirmed the conclusion of a committee 57 that although the hypothesis of an association between neurodevelopmental disorders and the use of thimerosal-containing vaccines was biologically plausible, it was not supported by epidemiological evidence. Concerned parents have formed advocacy groups devoted to the autism-mercury hypothesis, while public health officials voice concerns about declining vaccination rates.

In the first half of the 20th century, parents of children with developmental disabilities gathered in small local groups to compare notes and wonder about their children's future. In the s and s, these parent organizations began working together and started to change society's views toward children with disabilities.

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They argued that there was no shame in disability and that local schools and governments had an obligation to support families who cared for their children at home. By , the largest parent group, the National Association for Retarded Children, had local chapters. A variety of professionals such as teachers in schools with special education programs also provided a voice for children with disabilities.

During the last 2 decades, advocacy groups have developed new relationships with researchers and medical practitioners. The wide availability of information on the Internet, combined with an increasing skepticism toward medical authority, has led to the formation of advocacy groups with an unprecedented interest in taking part in research on particular disorders and to very specific ideas about both the disorder and the ways that research should be carried out.

Patients and their caregivers also have acquired a historical perspective: scholars in disability studies have demonstrated the ways that systematic exclusion from economic opportunities has been as important as medical factors in creating perceptions of persons with disabilities. Beginning with human immunodeficiency virus and AIDS treatment activists in the last 2 decades, patient groups have gone beyond supporting research through funding to actively question the ways that clinical trials, for instance, are designed. Patient advocacy groups are not always easy partners with researchers, but they offer opportunities for understanding disorders in ways that are difficult to envision within the confines of clinical work.

Patients and their caregivers have daily experiences with illness; they witness its alterations over periods of weeks and months and are often in a privileged position when it comes to detailed reporting on the efficacy of treatments. In the case of a behaviorally diagnosed disorder such as autism, this daily intimacy provides important resources: parental reports can enable subtyping across medical groups, such as children with regressive autism or gastrointestinal disturbances.

Indeed, the recent interest of the National Institutes of Health and other national research organizations in community-based, participatory research acknowledges the value of including patients and advocates in all aspects of medical research. Many, like Clara Claiborne Park 20 and Karyn Seroussi, 28 express the sense that their status as parents invalidates their observations about their children in the opinions of medical practitioners.

Meanwhile, pediatricians are concerned about the willingness of parents to fully disclose the range of interventions that they are using with their children, and many have voiced concerns that unproven treatments might be used in favor of behavioral and educational interventions. While case scenarios such as the one at the beginning of this article are not uncommon, it is critical to understand that parents of children with autism generally share the values of medical professionals. Both parents and pediatricians are seeking amelioration of symptoms and the best possible quality of life for children, and nearly all agree on the potential value of medical and behavioral interventions.

In this article, we have attempted to note the many instances when parents have contributed to the expert understanding of autism: as acute observers of their children, noting nuances of behavior and treatment response that might be invisible to pediatricians; as researchers, identifying new avenues of clinical and basic science; and as advocates, disseminating knowledge and generating resources for further research.

It is important that physicians be clear with parents about the strengths and weaknesses of both standard medical knowledge and alternative treatments. The history of parental involvement with research also suggests that each parent of a child with autism is a valuable source of information and localized expertise, not only about their own child but about the disorder of autism in general.

Most importantly, parents and caregivers will be crucial in making any treatment effective on the level of the individual child. It is unlikely that autism will respond to a single decisive intervention; it is far more likely that both pediatricians and parents will be operating in the realm of partial and incremental improvements for quite some time.

We hope that this article helps professionals to understand the historical contributions of families of children with autism and to thus foster the collaborative relationship that is critical to improving the care of persons with autism. Author Contributions: Study concept and design : Silverman and Brosco. Acquisition of data : Silverman. Analysis and interpretation of data : Silverman and Brosco. Drafting of the manuscript : Silverman. Critical revision of the manuscript for important intellectual content : Silverman and Brosco.

Obtained funding : Silverman. Administrative, technical, and material support : Silverman. Silverman C, Brosco JP. Arch Pediatr Adolesc Med. All Rights Reserved.

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Citations View Metrics. Chloe Silverman ; Jeffrey P. Brosco, PhD. Learning from parents. Parents as proponents of interventions. Antagonism, partnership, or collaboration? Back to top Article Information. The child is father. Advocate ;12 Google Scholar. Readings on the Exceptional Child. Individuality in an Epidemic.

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Reverse Mathematics: Proofs from the Inside Out. Wendy Austin. Don't already have an Oxford Academic account? Usually ships within 1 week. While biomedical knowledge is dispersed through an emotionally neutral, technical language that separates experts from laypeople, parental advocacy and activism call these distinctions into question. Treatment was individualized to the child. Enabling JavaScript in your browser will allow you to experience all the features of our site.

Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Retraction of an interpretation.

Berkeley University of California Press;. Essays on the Anthropology of Reason. Learn more. Sign in to access your subscriptions Sign in to your personal account. Create a free personal account to download free article PDFs, sign up for alerts, and more. Each child with autism spectrum disorder is likely to have a unique pattern of behavior and level of severity — from low functioning to high functioning.

Some children with autism spectrum disorder have difficulty learning, and some have signs of lower than normal intelligence. Other children with the disorder have normal to high intelligence — they learn quickly, yet have trouble communicating and applying what they know in everyday life and adjusting to social situations. Because of the unique mixture of symptoms in each child, severity can sometimes be difficult to determine.

It's generally based on the level of impairments and how they impact the ability to function. A child or adult with autism spectrum disorder may have problems with social interaction and communication skills, including any of these signs:. A child or adult with autism spectrum disorder may have limited, repetitive patterns of behavior, interests or activities, including any of these signs:.

As they mature, some children with autism spectrum disorder become more engaged with others and show fewer disturbances in behavior. Some, usually those with the least severe problems, eventually may lead normal or near-normal lives. Others, however, continue to have difficulty with language or social skills, and the teen years can bring worse behavioral and emotional problems.

Babies develop at their own pace, and many don't follow exact timelines found in some parenting books. But children with autism spectrum disorder usually show some signs of delayed development before age 2 years. If you're concerned about your child's development or you suspect that your child may have autism spectrum disorder, discuss your concerns with your doctor. The symptoms associated with the disorder can also be linked with other developmental disorders. Signs of autism spectrum disorder often appear early in development when there are obvious delays in language skills and social interactions.

Your doctor may recommend developmental tests to identify if your child has delays in cognitive, language and social skills, if your child:. Autism spectrum disorder has no single known cause. Given the complexity of the disorder, and the fact that symptoms and severity vary, there are probably many causes. Both genetics and environment may play a role. One of the greatest controversies in autism spectrum disorder centers on whether a link exists between the disorder and childhood vaccines. Despite extensive research, no reliable study has shown a link between autism spectrum disorder and any vaccines.

In fact, the original study that ignited the debate years ago has been retracted due to poor design and questionable research methods. Avoiding childhood vaccinations can place your child and others in danger of catching and spreading serious diseases, including whooping cough pertussis , measles or mumps. The number of children diagnosed with autism spectrum disorder is rising.

It's not clear whether this is due to better detection and reporting or a real increase in the number of cases, or both. Autism spectrum disorder affects children of all races and nationalities, but certain factors increase a child's risk. These may include:. There's no way to prevent autism spectrum disorder, but there are treatment options.

Understanding Autism: Parents, Doctors, and the History of a Disorder

Early diagnosis and intervention is most helpful and can improve behavior, skills and language development. However, intervention is helpful at any age. Though children usually don't outgrow autism spectrum disorder symptoms, they may learn to function well. Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission.

This content does not have an English version. This content does not have an Arabic version. Overview Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. Request an Appointment at Mayo Clinic. Share on: Facebook Twitter. References Autism spectrum disorder ASD. Centers for Disease Control and Prevention. Accessed April 4, Uno Y, et al. Early exposure to the combined measles-mumps-rubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder.

Taylor LE, et al. Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies.

Autism Spectrum Disorder and DSM-5 - Presented by Martin Lubetsky, MD

Weissman L, et al. Autism spectrum disorder in children and adolescents: Overview of management.