It’s often said, “There are lies… Damn lies…and Statistics!” This is true in most fields, certainly within quantitative research where data is analyzed and then used to produce the statistics that we use to learn about different phenomena and eventually use to push whatever agenda. Autism is no different! Statistically speaking, you’re bound to know somebody or be somebody on the Spectrum, given that as of 2012, a large percentage of the global population, a median of 0.62% of the population to be exact, has been identified as being on the Spectrum. A 2012 review of global prevalence estimates for Autism found a median of 62 cases per 10,000 people (https://en.wikipedia.org/wiki/Epidemiology_of_autism). The prevalence of Autism itself, appears to be on the rise:
The number of children known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; it is unclear whether prevalence has actually increased; and as-yet-unidentified environmental risk factors cannot be ruled out. The Centers for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) Network reports that in 2014, approximately 1 in 59 children in the United States (1 in 37 boys, and 1 in 151 girls), has been identified with an autism spectrum disorder (ASD). This estimate is a 15% increase from the 1 in 68 rate in 2010, 86% increase from the 1 in 110 rate in 2006 and 154% increase from the 1 in 150 rate in 2000.
Additionally, these facts and figures are primarily referring mostly to newly diagnosed children and particularly boys. However, adolescents, adults, girls, and women are diagnosed less frequently. Only recently, likely due to rising concern about the observed increase in prevalence and heightened efforts to identify individuals with the condition, there is also a greater effort to identify people who are Autistic in these populations as well as to try to find treatments that would be beneficial to everyone on the Spectrum to meet the greater identified need.
But what is Autism (ASD)? According to the DSM 5, Autism Spectrum Disorder (ASD) is related to impairment in communication and social interaction, specifically having difficulty in the areas of social communication and having or exhibiting restricted and repetitive interests and behaviors, that then impact and lead to hardships and difficulties in multiple areas of life including home, school, and work and require different levels of assistance to improve and support functioning.
You might think of autism as a new problem because it has become such a popular topic of discussion in recent years. But it’s actually been on the books for more than 70 years–and our thinking about the condition has changed dramatically during that time. In fact, autism and similar conditions that have come to be described by and subsumed under the “ASD” Diagnosis, have gone through significant changes over the years as illustrated by the history presented in the book “Neuro-Tribes: The Legacy of Autism and the Future of Neuro-Diversity” by Steve Silberman with Forward by Oliver Sacks (Penguin, 2015) creating much debate and at times developing factions within the Autism community itself.
Key Events in Autism History
Autism: A Timeline (https://www.parents.com/health/autism/the-history-of-autism/)
1908: The word autism is used to describe a subset of schizophrenic patients who were especially withdrawn and self-absorbed.
1943: American child psychiatrist Leo Kanner, M.D., publishes a paper describing 11 children who were highly intelligent but displayed “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.” He later names their condition “early infantile autism.”
1944: A German scientist named Hans Asperger describes a “milder” form of autism now known as Asperger’s Syndrome. The cases he reported were all boys who were highly intelligent but had trouble with social interactions and specific obsessive interests.
1967: Psychologist Bruno Bettelheim popularizes the theory that “refrigerator mothers,” as he termed them, caused autism by not loving their children enough. (Spoiler alert: This is completely false.) “Post-World War II, there was a lot of psychoanalytic work done on autism where researchers looked solely at the impact of life experiences,” explains Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine and editor-in-chief of the Journal of Autism & Developmental Disorders. “They didn’t consider the role of biology or genetics, which we now understand to be the main cause.” Autism is also classified under schizophrenia in the International Statistical Classification of Diseases and Related Health Problems, although scientists now know there is no link between the conditions.
1977: Research on twins finds that autism is largely caused by genetics and biological differences in brain development.
1980: “Infantile autism” is listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM) for the first time; the condition is also officially separated from childhood schizophrenia.
1987: The DSM replaces “infantile autism” with a more expansive definition of “autism disorder,” and includes a checklist of diagnostic criteria. UCLA psychologist Ivar Lovaas, Ph.D., publishes the first study showing how intensive behavior therapy can help children with autism–thus giving new hope to parents.
1988: The movie Rain Man is released. It stars Dustin Hoffman as an autistic savant who has a photographic memory and can calculate huge numbers in his head. “This was important for raising public awareness of the disorder,” Dr. Volkmar notes, although not every kid on the autism spectrum has these kinds of skills.
1991: The federal government makes autism a special education category. Public schools begin identifying children on the spectrum and offering them special services.
1994: Asperger’s Syndrome is added to the DSM, expanding the autism spectrum to include milder cases in which individuals tend to be more highly functioning.
1998: A study published in The Lancet suggests that the measles-mumps-rubella (MMR) vaccine causes autism. This finding was quickly debunked.
2000: Vaccine manufacturers remove thimerosal (a mercury-based preservative) from all routinely given childhood vaccines due to public fears about its role in autism–even though, again, the vaccine-autism link has been debunked.
2009: The U.S. Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 children have autism spectrum disorders, up from 1 in 150 in 2007, though the CDC notes that the increase stems at least in part from improved screening and diagnostic techniques.
2013: The DSM-5 folds all subcategories of the condition into one umbrella diagnosis of autism spectrum disorder (ASD). Asperger’s Syndrome is no longer considered a separate condition. ASD is defined by two categories: 1) Impaired social communication and/or interaction. 2) Restricted and/or repetitive behaviors.
All of these changes to our conceptualization of autism notwithstanding, we continue to observe autism, gather data, engage in research, experiments, and trials of interventions to collect more information and more data to be able to help everyone on and off the spectrum live their best life possible. For those on the spectrum, the work is about helping to support, improve, and increase independent functioning; while for caretakers, it’s about identifying ways to facilitate their process of helping loved ones become as independent as possible. In the end, everyone benefits because our world becomes filled with a greater number of functional, independent individuals that can contribute to their communities and our society because of their special gifts and talents and the “out-of-the-box” way that they see the world.
But what have we learned so far and how can we use these data and facts?
During the course of our research so far, we have learned many things about Autism, many things about it such as: about its prevalence; about its causes; about its interventions and supports; about associated challenges; associated medical and mental health conditions; about its impact on caregivers and families; about its presentation in Adulthood; and even about its very real economic costs. You might say that over the years we have collected significant information about Autism and the associated needs and only recently have we started trying to meet these needs and be better able to address them.
Autism Facts and Figures
- In 2018 the CDC determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder (ASD).
- 1 in 37 boys
- 1 in 151 girls
- Boys are four times more likely to be diagnosed with autism than girls.
- Most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2.
- 31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70), 25% are in the borderline range (IQ 71–85), and 44% have IQ scores in the average to above average range (i.e., IQ >85).
- Autism affects all ethnic and socioeconomic groups.
- Minority groups tend to be diagnosed later and less often.
- Early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan.
- There is no medical detection for autism.
- Research indicates that genetics are involved in the vast majority of cases.
- Children born to older parents are at a higher risk for having autism.
- Parents who have a child with ASD have a 2 to 18 percent chance of having a second child who is also affected.
- Studies have shown that among identical twins, if one child has autism, the other will be affected about 36 to 95 percent of the time. In non-identical twins, if one child has autism, then the other is affected about 31 percent of the time.
- Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism.
Intervention and Supports
- Early intervention can improve learning, communication and social skills, as well as underlying brain development.
- Applied behavior analysis (ABA) and therapies based on its principles are the most researched and commonly used behavioral interventions for autism.
- Many children affected by autism also benefit from other interventions such as speech and occupational therapy.
- Developmental regression, or loss of skills, such as language and social interests, affects around 1 in 5 children who will go on to be diagnosed with autism and typically occurs between ages 1 and 3.
- An estimated one-third of people with autism are nonverbal.
- 31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70) with significant challenges in daily function, 25% are in the borderline range (IQ 71–85).
- Nearly half of those with autism wander or bolt from safety.
- Nearly two-thirds of children with autism between the ages of 6 and 15 have been bullied.
- Nearly 28 percent of 8-year-olds with ASD have self-injurious behaviors. Head banging, arm biting and skin scratching are among the most common.
- Drowning remains a leading cause of death for children with autism and accounts for approximately 90 percent of deaths associated with wandering or bolting by those age 14 and younger.
Associated Medical & Mental Health Conditions
- Attention Deficient Hyperactivity Disorder (ADHD) affects an estimated 30 to 61 percent of children with autism.
- More than half of children with autism have one or more chronic sleep problems.
- Anxiety disorders affect an estimated 11 to 40 percent of children and teens on the autism spectrum.
- Depression affects an estimated 7% of children and 26% of adults with autism.
- Children with autism are nearly eight times more likely to suffer from one or more chronic gastrointestinal disorders than are other children.
- As many as one-third of people with autism have epilepsy (seizure disorder).
- Studies suggest that schizophrenia affects between 4 and 35 percent of adults with autism. By contrast, schizophrenia affects an estimated 1.1 percent of the general population.
- Autism-associated health problems extend across the life span – from young children to senior citizens. Nearly a third (32 percent) of 2 to 5 year olds with autism are overweight and 16 percent are obese. By contrast, less than a quarter (23 percent) of 2 to 5 year olds in the general population are overweight and only 10 percent are medically obese.
Caregivers & Families
- On average, autism costs an estimated $60,000 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents. Costs increase with the occurrence of intellectual disability.
- Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to work outside the home. On average, they work fewer hours per week and earn 56 percent less than mothers of children with no health limitations and 35 percent less than mothers of children with other disabilities or disorders.
Autism In Adulthood
- Over the next decade, an estimated 500,000 teens (50,000 each year) will enter adulthood and age out of school based autism services.
- Teens with autism receive healthcare transition services half as often as those with other special healthcare needs. Young people whose autism is coupled with associated medical problems are even less likely to receive transition support.
- More than half of young adults with autism remain unemployed and unenrolled in higher education in the two years after high school. This is a lower rate than that of young adults in other disability categories, including learning disabilities, intellectual disability or speech-language impairment.
- Of the nearly 18,000 people with autism who used state-funded vocational rehabilitation programs in 2014, only 60 percent left the program with a job. Of these, 80 percent worked part-time at a median weekly rate of $160, putting them well below the poverty level.
- Nearly half of 25-year-olds with autism have never held a paying job.
- The cost of caring for Americans with autism had reached $268 billion in 2015 and would rise to $461 billion by 2025 in the absence of more-effective interventions and support across the life span.
- The majority of autism’s costs in the U.S. are for adult services – an estimated $175 to $196 billion a year, compared to $61 to $66 billion a year for children.
- On average, medical expenditures for children and adolescents with ASD were 4.1 to 6.2 times greater than for those without autism.
- Passage of the 2014 Achieving a Better Life Experience (ABLE) Act allows tax-preferred savings accounts for people with disabilities, including autism, to be established by states.
- Passage of autism insurance legislation in 48 states is providing access to medical treatment and therapies.
Hope and on the Bright Side…
Now what does all of this data mean for us, for everyone on and off the spectrum?… Well, it means that autism creates a real need, but also a very real opportunity for all of us and for our society. The needs are all of the supports, interventions, and challenges and obstacles to functioning that Autism is associated with and carries; the opportunity is in meeting these needs to allow these folks on the Spectrum to flourish and to help give back to their communities, our community. The additional opportunity is for the creation of meaningful jobs and meaningful work around and a mission for all of us around continuing the research of Autism to develop the best and most effective interventions and forms of care; around working in jobs and engaging in the mission of providing the care needed and required services for the optimal functioning for autistic People; and around working in jobs and engaging in the mission of providing the help and support Caregivers also need.
What else would you, as a neurotypical, like to know or like help with regarding ASD? Are you or your child on the spectrum? Is your significant other autistic? Let me know- I can help!
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