Autism Awareness Month Continued: Looking at the Numbers

April 04, 2012

Autism Awareness Month Continued: Looking at the Numbers

Yesterday, I was privileged to report to you all about the amazing events of this year’s World Autism Awareness Day on Monday, April 2nd. So many people, organizations, and governments from around the world are showing support for the people who deal with autism on a daily basis, whether a parent, educator, or autistic person. However, at the heels of that amazing day, I also reported on another, more troubling reality. The latest report from the United States’ Centers for Disease Control and Prevention (CDC) has identified that 1 in 88 American children suffer from some form of autism. Furthermore, that statistic is even more startling for boys, who are diagnosed with autism at an alarming rate of 1 in 54. So today, in an effort to shine a light on the less glamorous world of autism, I want to share two pieces designed to make you think and, probably, make you angry as well. The first is the report I cited yesterday from Autism Speaks. It comes from a speech presented to the CDC by Autism Speaks president Mark Roithmayr. It is a rally cry for us all to recognize the epidemic among us. The next piece I bring to you this morning is also from Autism Speaks. This time, however, the focus is on something a bit more near and dear to the hearts of politicians and policymakers in the U.S. and around the world: the rising costs of treating autism. In the U.S. alone, the annual cost of autism treatment has risen to a staggering $126 billion. If we are to move forward, we need to address this epidemic now and see to it that the money spent treating the children and adults affected by it is being used wisely. 1 in 88: We Need a Strategy Speech delivered to the CDC by Autism Speaks President Mark Roithmayr Merriam-Webster defines the word epidemic as "Excessively prevalent. Affecting a disproportionately large number of individuals within a population, community or region at the same time." With the new Centers for Disease Control and Prevention numbers now showing that 1 in 88 children in the United States are being diagnosed with autism – nearly a doubling of the prevalence since the CDC began tracking these numbers – autism can now officially be declared an epidemic in the United States. We are dealing with a national emergency that is in need of a national strategy. At 1 in 88, we now have over 1 million children directly affected by autism. According to a newly released study the annual cost of autism in the United States is a staggering $126 billion annually, more than tripling the cost analysis from six years ago. Behind all these statistics are real families, real individuals struggling each and every day. Some with autism are struggling to find satisfying jobs where they can productively use their talents and abilities. Others with autism have extremely complicated medical and social challenges. Make no mistake though, wherever one falls on the spectrum, all with autism struggle each and every day. And it is clearly time we, as a caring society, commit to a National Strategy.  A comprehensive National Strategy that substantially increases all efforts to date. A call to action that:
  • Funds more basic science uncovering the genetic underpinnings of autism.
  • Funds more environmental research detecting the causes of autism.
  • Accelerates the funding and development of effective medicines and treatments.
  • Commits to a strategy where all children with autism from every background are diagnosed no later than 18 months of age.
  • Commits to a National Training Corps recruiting more therapists and service providers as well as specially trained teachers and teacher assistants into the field.
  • We also need to address the growing issue of adults with autism specifically around continuing education, employment, housing/residential living and community integration. Here too, we need a focus on a National Training Corps to recruit and train professionals to work with our adults.
As the nation's leading science and advocacy organization, Autism Speaks today calls on the entire nation to commit to this National Strategy, a true public-private partnership:
  • From President Obama to each of the Republican candidates for President to all Members of Congress.
We desperately need further commitments from....
  • The CDC and Dr. Frieden whose very funding of this prevalence study is in jeopardy of being cut going forward.
  • Secretary Sebelius and the Department of Health and Human Services.
  • Dr. Francis Collins and the National Institutes of Health.
And it is not the federal government alone we call on.  We need the private sector as well as state and local governments to be part of this National Strategy:
  • Right now insurance companies and the majority of self-funded plans under ERISA discriminate against families with autism denying reimbursement for the basic, evidenced based services that can often dramatically improve the quality of life for their children with autism.
  • There are pharmaceutical companies who can speed the process of effective medicines for people living with autism to improve communication, socialization and behavior, the core symptoms of autism.
  • We need companies across all industries to commit to hiring the 74% of adults with autism who believe they have the potential to be employed if just given the opportunity.
  • And we need employers of all parents who have children with autism to become much, more family friendly as way too many mothers of children with autism have had to stop out of their careers to be able to care for their loved ones because their work environments could not find a way to accommodate their schedules.
  • We need local school systems to deliver individualized and quality driven plans to meet autism's ever growing demand for appropriate special education services.
  • We need faith based and community based organizations who can provide respite services for parents and caregivers as well as recreational and community integration opportunities for people with autism.
  • And the list goes on to include siblings, grandparents, aunts, uncles, friends and neighbors. At 1 in 88, we are now hard pressed as a nation to find anyone who is not touched by autism.
Ultimately the question we need to ask ourselves is why over the last two decades has there been such a tremendous increase in autism?  Dr. Peter Bearman of Columbia University was funded by the NIH to answer this very question. His findings have revealed that the increase in prevalence is only partly explained by a broadening of the diagnosis, improved detection, and more awareness.  A large portion of the increase some 50% remains unexplained.  That is why we must aggressively fund research, including the critical study of potential environmental factors.  We need to find the answers. At 1 in 88, let me be clear, the United States is experiencing an autism epidemic. This is a national emergency. We need a national strategy. [caption id="attachment_1322" align="alignleft" width="300" caption="Image courtesy of Stuart Miles"][/caption] The Annual Cost of Autism Has More than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K. From Medical News Today, based on an Autism Speaks Press Release Autism Speaks, the world's leading autism science and advocacy organization, has announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) - a number that has more than tripled since 2006, and annually in the U.K. has reached more than £34 billion (equivalent to $54 billion U.S.). The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4 million) in the U.K. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. and £917,000 in the U.K. (equivalent to $1.46 million). The Autism Speaks-funded research, conducted by researchers Martin Knapp, Ph.D., of the London School of Economics, and David Mandell, Sc.D., of the University of Pennsylvania, will be presented at the international conference "Investing in our Future: The Economic Costs of Autism," hosted by Goldman Sachs in collaboration with the Child Development Centre and Autism Speaks, on March 31 in Hong Kong. Drs. Knapp and Mandell compiled information from recent studies of autism costs from multiple sources to calculate the current cost of autism associated with the current CDC-reported prevalence that 1:110 children are diagnosed with an autism spectrum disorder (ASD). The cost of autism continues to grow with the rise in prevalence. While the latest prevalence estimates in the U.S. and U.K. are comparable, the primary difference in total costs of autism in the U.S. and U.K. are due to differences in total country population (five times larger in the U.S. than the U.K.). The research team found that the cost of autism in the U.S. alone is greater than the entire Gross Domestic Product (GDP) of 139 countries around the world. Bob Wright, co-founder of Autism Speaks, said, "Autism is a global public health crisis. The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the U.S. and governments around the world step up their commitment to helping people living with autism today. The investment we make now is essential to reducing the long-term costs of autism." This research found that intellectual disability plays a major role in the cost of autism to individuals, families, and society as a whole. The costs of autism per year are nearly twice as high on average for children and adults with intellectual disability than for children and adults without intellectual disability, $2.3 million in the U.S. and £1.5 million in the U.K. ($2.4 million) for those individuals who are impacted by intellectual disability compared with more than $1.4 million in the U.S. and £917,000 ($1.46 million) in the U.K. for those who do not have intellectual disability. A number of factors were considered by the researchers that contributed to the cost differential between U.S. and U.K. lifetime and total costs. The education and healthcare systems in the two countries offer different responses to the needs of people with autism and their families. Access to empirical data regarding healthcare and education costs differed between the two countries. It is also currently estimated that 45 percent of individuals with ASD in the U.S. and 55 percent of individuals with ASD in the U.K. have intellectual disabilities, defined as an IQ of 70 or less. Experts consistently point to early interventions as key to increasing language and IQ scores, and reducing life span costs. Total costs to the U.S. were also based on adult prevalence of one-half of one percent, lower than currently estimated 1:110 prevalence of autism in children, derived from past CDC studies. The researchers point to adult prevalence as an area for additional study in the U.S. The research also found that non-medical costs account for the greatest proportion of expenses. While direct medical costs, such as outpatient care, home care, and pharmacy, contribute significantly to overall expenses, non-medical costs, including intervention services and special education, child daycare, and especially residential placements and care for adults who age out of school and can no longer live at home with parents account for the largest proportion of autism costs. "The burden on families affected by autism is enormous," continued Autism Speaks President Mark Roithmayr. "The extraordinary cost further exacerbates that burden. The time and effort involved in coordinating the care and treatment plan across a large number of providers has reduced the ability of many families to earn a living. Too many families are still denied insurance coverage for essential treatments and services, and the economics add to overall emotional burden on families." Building on this preliminary research, Autism Speaks recently provided additional funding to Drs. Knapp and Mandell to support an additional year of study to examine how autism therapies reduce lifetime costs associated with autism. Their investigation will focus on both intensive preschool behavioral interventions and vocational interventions that support an individual's independence during the transition to adulthood. Calculations will take into account costs related to healthcare, education, caregiving, housing, and employment. As confirmed by this study, the majority of costs related to autism are incurred during adulthood, principally due to the cost of residential care as well as loss of productivity, underemployment and unemployment among adults with autism. Services for adults are both lacking and expensive. In 2007, Michael L. Ganz, Ph.D. of the Harvard School of Public Health published research in the journal Archives of Pediatric and Adolescent Medicine which estimated that autism cost the United States more than $35 billion per year, and that the incremental cost of caring for an individual with autism over his or her lifetime due to their special needs was more than $3 million. Despite growing prevalence, autism currently receives less than five percent of the research funding of many less prevalent childhood diseases and disorders. Dr. Mandell added, "We are paying for the costs of inaction and the costs of 'inappropriate action.' Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole." Dr. Mandell and his colleagues recently published findings in Pediatrics that mothers of children with ASD are less likely to work, work fewer hours per week and earn substantially less. Typically the primary caregiver, mothers are called upon to serve as their child's case manager and advocate, and on average, earn 56 percent less than mothers of children with no health limitations. They earn 35 percent less than mothers of children with another health limitation. They are 6 percent less likely to be employed, and they work an average of seven hours less per week. Dr. Knapp, Professor of Social Policy at the London School of Economics and Political Science and a preeminent expert on health economics explained that the economic burden of autism varies widely across different parts of society from the individuals with ASD, their families, the communities they live in, businesses in those communities, to the government agencies which provide healthcare, education, welfare benefits, social care, and housing. "There is an immediate need for better coordination across public agencies and levels of government from local to national in the way that society structures its service delivery system; too often responses to the needs of individuals and families are piecemeal and less helpful than they could be," he concluded. This research was wholly funded by Autism Speaks. The World Health Organization (WHO), through its partnership with Autism Speaks, is serving in an advisory capacity and providing technical support for the cost of autism analysis.



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