"Family Support for Children with Autism: A Community Based Approach"
By Josh Glauser, Vice President of Siblings with a Mission
When I was 12 years old, I vividly remember going to the grocery store with my twin brother Jacob, who has severe autism. Walking down the aisles, I had to avoid the perplexed stares and hurried footsteps of people scurrying away as Jacob flapped his arms and made incoherent noises. My parents had told me to ignore what people thought, but that didn’t stop me from becoming flushed with anxiety, anger, and embarrassment.
This is the daily life of many families who have a loved one with autism spectrum disorder, or ASD. Around the globe, 67 million people are diagnosed with ASD. In the United States, 1 in 45 children, or 2.24% of the underage population in 2014 has ASD (National Health Statistics Reports, 2015). In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), ASD is diagnosed by two main criteria: the first includes “persistent deficits in social communication and social interaction across multiple contexts” such as deficits in “social-emotional reciprocity”, “nonverbal communicative behaviors used for social interaction”, or “in developing, maintaining, and understanding relationships” (Reynolds & Kamphaus, 2013). The other criterion is “restricted, repetitive patterns of behavior, interests, or activities” including “motor movements”, fixation on objects”, “inflexible routines”, or “sensitivity to sensory input” (Reynolds & Kamphaus, 2013). The range of ASD is significant: children can have a very mild form that allows them to function in society, which was previously known as Asperger’s Syndrome, but is now under the umbrella term ASD (Reynolds & Kamphaus, 2013). On the other hand, children can have severe ASD, which requires substantial assistance to do normal tasks and often manifests in nonverbal communication (Reynolds & Kamphaus, 2013).
ASD not only affects the children with the disorder, but the family as well. Stigma and social suffering are major global health problems faced by families who have a child with ASD that require substantive solutions. The social structures put in place today are not equipped enough to support these families and reduce stigma and social suffering. Therefore, these structures need to be remodeled in a way that incorporates a biosocial approach with a historical perspective in mind.
Stigma that these families face arises from a historical manifestation of a social construction of reality. Outlined by Berger and Luckmann, this theory claims that human activity becomes habitualized through institutionalized routines and established in the form of generalized knowledge (Berger & Luckmann, p.53, 1966). Therefore, this knowledge becomes legitimized as normative interpretations by the public (Berger & Luckmann, p.62, 1966). As a result, stigma is socially constructed as a way to discredit someone as a deviant member of society (Yang, 2007, p.1525). ASD perceptions are specifically habitualized through medical literature, which can be analyzed with a historical lens.
Starting in 1911, Eugen Bleuler described autism as a “detachment from reality with relative and absolute predominance of the inner life” that constituted a symptom of schizophrenia (Bleuler, 1911). Bleuler’s student Eugene Minkowski exacerbated this theory and characterized autism as the “trouble generator” of schizophrenia (Minkowski, 1927). Additionally, Minkowski claimed that autism caused people to lack “vital contact with reality”, a quality that makes someone humane (Minkowski, 1927). Through this, Minkowski implied the sub-human characteristics of people with autism, setting a precedent for the stigma that would be brought upon those with ASD and their families.
By the 1940s, this stigma was directed at the families themselves. Specifically, in Leo Kanner’s infamous research study, he concluded that autism was caused by a lack of maternal warmth from intelligent families, leading to childhood isolation and withdrawal from normal social interactions (Kanner, p. 250, 1943). As a result, Kanner referred to these mothers as “emotionally cold”, leading to the term “refrigerator mothers” for mothers who have a kid with autism (Cohmer, 2014). Well into the 1960s, the cause of autism was still being debated; As a result, a strong argument was made for a cold nurturing style during early childhood years having an effect on a child’s cognitive and social abilities (Cohmer, 2014). Throughout this time, mothers reported feeling resentment and distress towards child psychiatrists who said that they were to blame for their child’s disease (Cohmer, 2014). Another well-known psychiatrist Bruno Bettelheim compared mothers of autistic children to Nazi prison guards and their homes to concentration camps (Cohmer, 2014). In addition, Bettelheim advocated for “parent-ectomies”, a practice involving removing children with autism from their homes (Cohmer, 2014). Since then, refrigerator theory has been gradually rejected in favor of biological arguments, but the damage done by decades of stigma against families that have a child with ASD has not been easily reversed (Cohmer, 2014).
In recent years, the refrigerator theory has been replaced with the anti-vaccination campaign, which accounts for a lot of the stigma associated with ASD. This connection was made when Andrew Wakefield suggested a link between autism and the measles-mumps-rubella vaccine (Kata, 2009, p.1713). The false claims have been exacerbated by the advent of the Internet, which exists in at least 75% of American households (Kata, 2009, p.1709). Because of this movement, media outlets influence the public by perpetuating the idea of equating vaccines with autism. Thus, stigma towards kids with ASD and their families has continued as more people start to see kids with ASD today as products of unnatural factors. Through a historical perspective, stigma among families who have a child with ASD can be contextualized. Legitimized through medical literature, negative perceptions of people with ASD pervades amongst professionals and the public alike, creating an atmosphere of social stigmatization that would not have occurred otherwise.
International organizations have made strides to combat this stigma through emphasizing the inclusion of people with ASD into normal society on a global scale. For one, the Global Health Estimates Report by the World Health Organization has shown an increase in Disability Adjusted Life Years (DALYs) of Autism and Asperger Syndrome globally from 8.4 million to over 10 million life years affected between 2000 and 2015 (WHO, 2015). As a result, the WHO has formally recognized the growing concern of morbidity associated with ASD (WHO, 2015). Additionally, at the 67th World Health Assembly, the WHO created a comprehensive and coordinated efforts for the management of ASD, which was signed by more than 60 countries (WHO, 2017). Finally, the United National General Assembly declared April 2nd as World Autism Awareness Day, which continues to degrade the stigma around kids with ASD (WHO, 2017).
However, the effects of stigmatization are still being felt today. In families that have a child with autism, the parents have strong perceptions of stigma (Gray, 1993, p.113). This is especially true among mothers who feel that they have the most responsibility in raising the child (Gray, 1993, p.114). In addition, stigmatization is present in the siblings of the child with ASD (Gray, 1993, p.111). This is especially apparent since most families who have a kid with ASD miss out on normal family life including family outings and holidays (Gray, 1993, p.112). For example, the neurotypical children feel ashamed admitting they have a handicapped sibling and rarely invite friends to their houses (Gray, 1993, p.112).
Additionally, in countries with low and middle incomes, stigma and discrimination often lead to human rights violations against people with mental disabilities (Drew et al, 2011, p.1664). These discriminations include: exclusion in the community, denial of employment, physical abuse, inability to access mental health services, sexual abuse, denial of opportunities for family life, inability to live independently, and financial exploitation (Drew et al, 2011, p.1666). The UN Convention on the Rights of Persons with Disabilities (CRPD) was created in order to reduce these human rights violations (Drew et al, 2011, p.1664). However, many low and middle-income countries do not have the resources required to establish oversight mechanisms that deal with unlawful detentions, abuses at psychiatric institutions, and other blatant infringements of these rights (Drew et al, 2011, p.1672). As a result, stigma is still very prevalent towards people with mental disorders, including those who have ASD and their families.
Through this stigma, families experience social suffering. Social suffering, as Kleinman puts it, “results from what political, economic, and institutional power does to people and how these forms of power themselves influence responses to social problems” (Kleinman, Das, & Lock, 1997). In other words, social suffering arises when institutional bodies constrain agency by influencing one’ behaviors. In addition, social suffering refers to the interpersonal experience of suffering, the experience of chronic illness, and the ways that institutions unintentionally perpetuate these social and health problems (Farmer, 2013, p. 30). In this way, social suffering of families who have a child with ASD has resulted from cultural norms restraining these people in terms of habitualized stigma.
Most of the social suffering families endure results from caring for the child who has ASD. First of all, parents suffer mentally from the stress of caring for a child with ASD, including symptoms of prolonged depression, anxiety, and anger (Gray, 2002, p.217). Equally problematic is the fact that caring for a child with ASD results in career problems, where limitations to one’s profession are the consequences of having to care for the child, and, in some cases, results in denial of opportunity for outside employment entirely (Gray, 2002, p. 218). This comes from the fact that many children who have a severe form of ASD require one-on-one assistance from a family member. On average, mothers of children with ASD earn 56%, or around $15,000 less than mothers of neurotypical children (Cidav, Marcus, & Mandell, 2012). Also, these same mothers are 6% likely to be employed and work, on average, seven less hours per week than mothers of children without a major health implication (Cidav, Marcus, & Mandell, 2012). Therefore, parents of children with ASD experience an enormous financial burden that affects all aspects of their families’ lives. Lastly, parents can experience physical suffering if the child with ASD becomes violent and aggressive (Gray, 2002, p. 220).
The financial burdens of families extend beyond care to encompass medication and behavioral treatment. People with ASD have increased rates of physical problems including insomnia, sleep latency, gastrointestinal diseases, and epilepsy (Murphy et, al, 2016, p.1675). Additionally, mental disorders such as Obsessive-Compulsive Disorder, attention-deficit hyperactivity disorder, psychotic disorders, mood disorders and anxiety disorders are comorbid with ASD (Murphy et al, 2016, p. 1676). Many of these disorders require medications and treatment that supplements the caregiving burden of families significantly.
One of the most pervasive problems experienced by parents of children with ASD is the transition from adolescence to adulthood for the person with ASD (Gray, 2002, p. 220). Initially, many young adults with ASD were institutionalized in a state facility for people with mental disabilities (Gray, 2002, p.220). Today, a small minority of adults with ASD live by themselves, while some are situated in long-stay institutions, but most still live at home with their parents (Henricks & Wehman, 2009, p.80). When adults with ASD stay at home well into adulthood, this leads to higher levels of stress and depression for the parents (Henricks & Wehman, 2009, p.80). In addition, the young adults with ASD also experience negative consequences including a lack of independence, social isolation, and a lack of contentment (Henricks & Wehman, 2009, p.80). One reason that adults with ASD co-reside with their parents is that finding suitable employment is very difficult, demonstrated by an employment rate of 25% (Henricks & Wehman, 2009, p.80). Social suffering, in this case, is a consequence of the inadvertent constraining agencies of institutions that turn away opportunities to adults with ASD. Thus, as more adults with ASD become unemployed, the more likely they are to live at home and create an environment filled with social suffering for the family.
Stigma and social suffering create an environment for families who have a child with ASD that is full of stress and dramatically interferes with daily life, leading to worse life and health outcomes for both the child with ASD and the family members. Many solutions have been created to help families cope with these burdens, but contain many drawbacks as well.
The first instance is respite care, which is the relief from the constant demands that come with having a child with ASD (Norton & Drew, 1994, p.71). This can come in two forms: informal care of friends and family without compensation, or formal care of a paid social service agency (Norton & Drew, 1994, p.71). Respite is very important because it provides parents with the opportunity to devote time to other demands (Oppenden, 2006, p.121). In addition, there is improved quality time with their child with ASD (Oppenden, 2006, p.121). However, respite options for parents are very costly, since the caretaker would have to be specialized in caring for kids with ASD, and the necessity for respite is very high in order for the parents to work and care for the household (Oppenden, 2006, p.121). As a result, this solution is not particularly viable for families in poverty and who can not seek the same opportunities as high and middle-class families.
In addition, current legislation in the United States, for example, has also assisted parents by easing the financial burden brought upon by medical bills and respite care. Under the Medicaid system, families living in states that enforce private insurers to have mandatory coverage for autism services have dramatically reduced health care costs (Parish et al, 2012). However, theses mandates are only covered in 26 states, isolating many families from receiving affordable health care services (Parish et al, 2012). As a result of the United States’ decentralized healthcare system, some families consequently pay more out-of-pocket for diagnostic and behavioral services that is otherwise covered in many other states. The financial burden itself creates social suffering for the family as private insurers constrain the agency of the parents.
The United Kingdom is another nation that has comprehensive ASD legislation where the government has mandated community services including ASD friendly services, quality diagnoses, and appropriate support for families covered under the public health insurance (Murphy et al, 2016, p.1671). However, most countries around the world have no specific legislation regarding services towards families that have a loved one with ASD, especially in lower income countries.
Even with these solutions, respite care and legislation have failed to provide equal outcomes for families who have a child with ASD. These are examples of neoliberalism in the realm of mental health where health care is seen as a commodity that is efficiently allocated to the market (Farmer et al, 2013, p. 88). As a result, the poorest people can not afford respite care since they are limited to how much they can contribute to the healthcare market. Additionally, in almost half of the states in the US, this is compounded by the failure of ASD services to be covered by private insurers, creating social suffering for those who can not afford the out-of-pocket expenditures (Parish et al, 2012) .
Stigma and social suffering are major concerns for families who have a child with ASD. Stigma of ASD appeared a century ago, and was legitimized through medical journals. Today, international organizations have made strides to reverse this stigma that has had such a detrimental effect on families. Additionally, social suffering resulting from stigma, constant caregiving, and general financial burden for families have solutions that preferentially treat those families that can afford the needed services. Thus, to address both stigma and social suffering equally among all of these families, I propose a four-point solution that will reduce stigma and provide equal, quality care that will diminish the financial and mental burden of those families who have a child with ASD.
First of all, I propose that major ASD support groups such as Autism Speaks can form partnerships with organizations to promote ASD-friendly businesses and events. Currently, in large, wealthy communities, sensory-friendly concerts are held that do not present overwhelming stimuli to children with ASD, allowing them and their parents to enjoy events they normally would not be able to. This idea can extend to other occasions such as movie theaters, where the volume and contrast of the films are turned down as to not inundate the kids. In addition, members of an organization can accompany families during their outings and make sure their experiences are conducted as smooth as possible. For example, when parents enter a major grocery store like Walmart, the child with ASD can be overwhelmed by the amount of people and the excessive noise level. However, this trip can be eased by having an employee trained in social work help the family retrieve groceries, manage confrontations with other customers, and normalize the harmlessness of the child by appearing friendly around him or her. This would decrease the stigma of other customers staring at the child, and also reduce the stress of the parents. This model can also be applied to zoos, professional football and baseball games, dentist offices, theme parks, and other community events.
Additionally, I propose that community health workers can be trained in caregiving services for families of a child with ASD, which follows a task-shifting model. This model was very successful during the DOTS campaign in Boston and Haiti, where accompagnateurs delivered antiretroviral therapy, provided psychosocial support, and connected patients to available resources (Behforouz, Farmer, & Mukherjee, 2004, p.S429). Accompagnateurs are respected members of the communities that provide a connection between the clinic and patients and ensure treatment adherence while providing additional support (Behforouz, Farmer & Mukherjee, 2004, p.S431). Similarly, accompagnateurs can be used to connect families and children with ASD to their schools, communities, and hospitals. This can be done in multiple ways: for one, accompagnateurs would ensure that children with ASD take their medications prescribed by doctors to treat behavioral issues, or comorbid diagnoses such as epilepsy (Murphy et al, 2016, p.1676). Additionally, accompagnateurs can be assigned to a select number of families and be on-call during working hours where they can watch the child with ASD if the parents need it. Finally, accompagnateurs can act as liaisons for local ASD organizations and present families with a comprehensive list of opportunities for families to pursue in regard to tutoring, psychological support, or other respite options. Most importantly, these accompagnateurs would be government workers that are supported in one’s government insurance package, or paid for by a non-governmental organization, reducing the cost of respite care significantly for families, and especially for those who usually cannot afford it.
Next, I propose official government legislation changes to alleviate social suffering of families that have a child with ASD. First of all, legislation can be introduced which covers all ASD expenditures under a suitable insurance plan for that specific country. This would lay the foundation, allowing a community-based care plan to be able to thrive, such as one centered around accompagnateurs. Additionally, more funding allocation towards special education programs in public schools that will emphasize soft skills and social interactions will significantly increase the chances that a child with ASD will be able to find employment after graduating. By giving kids with ASD more education, social suffering is reduced among the parents during the transition period after graduation. Additionally, special education programs in schools can work with other students to integrate kids with mild ASD into the normal school setting, alleviating some of the stigma from peers. For example, a “buddy system” can be put in place to match neurotypical students and other students with ASD, where lifelong relationships can form. Finally, legislation can be passed to increase the opportunities for adults with ASD to live away from home after graduating. This can most beneficially occur by creating living communities that are accessible for families to visit, relieving social suffering caused by an adult with ASD living with his or her parents.
Finally, I propose that ASD support groups become in contact with public school special education programs and create a well-documented list of local resources available for the child with ASD as well as their families. First of all, schools can present a calendar of autism-friendly events for kids with ASD to attend with their families. In addition, the programs can provide a list of housing options as well as employment options for after graduation. A written documentation of these lists can be given directly to the parents with contact information of each organization. Thus, with a clear set of options, parents of adults with ASD can have less social suffering in many aspects of their lives.
The applicability of these solutions is very broad: they can be implemented in the United States and to other countries worldwide. In fact, these solutions can greatly improve health outcomes of parents in poorer countries that have a child with ASD, especially regarding government subsidized respite options and community health workers. The implementation of these solutions will vary from nation to nation depending on whether the healthcare system is public or private and centralized or decentralized.
However, the principles of improving a family’s well-being through reducing stigma and social suffering still remains a powerful motivator. A community approach that involves an integrated system of hospitals, local organizations, public schools, and housing centers can be effective in reversing the habitualized stigma and reduce social suffering of parents and their child with ASD. ASD is a family burden and it takes a multilateral solution to help these families live a life filled with more satisfaction, free of any financial or mental burdens.
By Josh Glauser, Vice President of Siblings with a Mission
When I was 12 years old, I vividly remember going to the grocery store with my twin brother Jacob, who has severe autism. Walking down the aisles, I had to avoid the perplexed stares and hurried footsteps of people scurrying away as Jacob flapped his arms and made incoherent noises. My parents had told me to ignore what people thought, but that didn’t stop me from becoming flushed with anxiety, anger, and embarrassment.
This is the daily life of many families who have a loved one with autism spectrum disorder, or ASD. Around the globe, 67 million people are diagnosed with ASD. In the United States, 1 in 45 children, or 2.24% of the underage population in 2014 has ASD (National Health Statistics Reports, 2015). In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), ASD is diagnosed by two main criteria: the first includes “persistent deficits in social communication and social interaction across multiple contexts” such as deficits in “social-emotional reciprocity”, “nonverbal communicative behaviors used for social interaction”, or “in developing, maintaining, and understanding relationships” (Reynolds & Kamphaus, 2013). The other criterion is “restricted, repetitive patterns of behavior, interests, or activities” including “motor movements”, fixation on objects”, “inflexible routines”, or “sensitivity to sensory input” (Reynolds & Kamphaus, 2013). The range of ASD is significant: children can have a very mild form that allows them to function in society, which was previously known as Asperger’s Syndrome, but is now under the umbrella term ASD (Reynolds & Kamphaus, 2013). On the other hand, children can have severe ASD, which requires substantial assistance to do normal tasks and often manifests in nonverbal communication (Reynolds & Kamphaus, 2013).
ASD not only affects the children with the disorder, but the family as well. Stigma and social suffering are major global health problems faced by families who have a child with ASD that require substantive solutions. The social structures put in place today are not equipped enough to support these families and reduce stigma and social suffering. Therefore, these structures need to be remodeled in a way that incorporates a biosocial approach with a historical perspective in mind.
Stigma that these families face arises from a historical manifestation of a social construction of reality. Outlined by Berger and Luckmann, this theory claims that human activity becomes habitualized through institutionalized routines and established in the form of generalized knowledge (Berger & Luckmann, p.53, 1966). Therefore, this knowledge becomes legitimized as normative interpretations by the public (Berger & Luckmann, p.62, 1966). As a result, stigma is socially constructed as a way to discredit someone as a deviant member of society (Yang, 2007, p.1525). ASD perceptions are specifically habitualized through medical literature, which can be analyzed with a historical lens.
Starting in 1911, Eugen Bleuler described autism as a “detachment from reality with relative and absolute predominance of the inner life” that constituted a symptom of schizophrenia (Bleuler, 1911). Bleuler’s student Eugene Minkowski exacerbated this theory and characterized autism as the “trouble generator” of schizophrenia (Minkowski, 1927). Additionally, Minkowski claimed that autism caused people to lack “vital contact with reality”, a quality that makes someone humane (Minkowski, 1927). Through this, Minkowski implied the sub-human characteristics of people with autism, setting a precedent for the stigma that would be brought upon those with ASD and their families.
By the 1940s, this stigma was directed at the families themselves. Specifically, in Leo Kanner’s infamous research study, he concluded that autism was caused by a lack of maternal warmth from intelligent families, leading to childhood isolation and withdrawal from normal social interactions (Kanner, p. 250, 1943). As a result, Kanner referred to these mothers as “emotionally cold”, leading to the term “refrigerator mothers” for mothers who have a kid with autism (Cohmer, 2014). Well into the 1960s, the cause of autism was still being debated; As a result, a strong argument was made for a cold nurturing style during early childhood years having an effect on a child’s cognitive and social abilities (Cohmer, 2014). Throughout this time, mothers reported feeling resentment and distress towards child psychiatrists who said that they were to blame for their child’s disease (Cohmer, 2014). Another well-known psychiatrist Bruno Bettelheim compared mothers of autistic children to Nazi prison guards and their homes to concentration camps (Cohmer, 2014). In addition, Bettelheim advocated for “parent-ectomies”, a practice involving removing children with autism from their homes (Cohmer, 2014). Since then, refrigerator theory has been gradually rejected in favor of biological arguments, but the damage done by decades of stigma against families that have a child with ASD has not been easily reversed (Cohmer, 2014).
In recent years, the refrigerator theory has been replaced with the anti-vaccination campaign, which accounts for a lot of the stigma associated with ASD. This connection was made when Andrew Wakefield suggested a link between autism and the measles-mumps-rubella vaccine (Kata, 2009, p.1713). The false claims have been exacerbated by the advent of the Internet, which exists in at least 75% of American households (Kata, 2009, p.1709). Because of this movement, media outlets influence the public by perpetuating the idea of equating vaccines with autism. Thus, stigma towards kids with ASD and their families has continued as more people start to see kids with ASD today as products of unnatural factors. Through a historical perspective, stigma among families who have a child with ASD can be contextualized. Legitimized through medical literature, negative perceptions of people with ASD pervades amongst professionals and the public alike, creating an atmosphere of social stigmatization that would not have occurred otherwise.
International organizations have made strides to combat this stigma through emphasizing the inclusion of people with ASD into normal society on a global scale. For one, the Global Health Estimates Report by the World Health Organization has shown an increase in Disability Adjusted Life Years (DALYs) of Autism and Asperger Syndrome globally from 8.4 million to over 10 million life years affected between 2000 and 2015 (WHO, 2015). As a result, the WHO has formally recognized the growing concern of morbidity associated with ASD (WHO, 2015). Additionally, at the 67th World Health Assembly, the WHO created a comprehensive and coordinated efforts for the management of ASD, which was signed by more than 60 countries (WHO, 2017). Finally, the United National General Assembly declared April 2nd as World Autism Awareness Day, which continues to degrade the stigma around kids with ASD (WHO, 2017).
However, the effects of stigmatization are still being felt today. In families that have a child with autism, the parents have strong perceptions of stigma (Gray, 1993, p.113). This is especially true among mothers who feel that they have the most responsibility in raising the child (Gray, 1993, p.114). In addition, stigmatization is present in the siblings of the child with ASD (Gray, 1993, p.111). This is especially apparent since most families who have a kid with ASD miss out on normal family life including family outings and holidays (Gray, 1993, p.112). For example, the neurotypical children feel ashamed admitting they have a handicapped sibling and rarely invite friends to their houses (Gray, 1993, p.112).
Additionally, in countries with low and middle incomes, stigma and discrimination often lead to human rights violations against people with mental disabilities (Drew et al, 2011, p.1664). These discriminations include: exclusion in the community, denial of employment, physical abuse, inability to access mental health services, sexual abuse, denial of opportunities for family life, inability to live independently, and financial exploitation (Drew et al, 2011, p.1666). The UN Convention on the Rights of Persons with Disabilities (CRPD) was created in order to reduce these human rights violations (Drew et al, 2011, p.1664). However, many low and middle-income countries do not have the resources required to establish oversight mechanisms that deal with unlawful detentions, abuses at psychiatric institutions, and other blatant infringements of these rights (Drew et al, 2011, p.1672). As a result, stigma is still very prevalent towards people with mental disorders, including those who have ASD and their families.
Through this stigma, families experience social suffering. Social suffering, as Kleinman puts it, “results from what political, economic, and institutional power does to people and how these forms of power themselves influence responses to social problems” (Kleinman, Das, & Lock, 1997). In other words, social suffering arises when institutional bodies constrain agency by influencing one’ behaviors. In addition, social suffering refers to the interpersonal experience of suffering, the experience of chronic illness, and the ways that institutions unintentionally perpetuate these social and health problems (Farmer, 2013, p. 30). In this way, social suffering of families who have a child with ASD has resulted from cultural norms restraining these people in terms of habitualized stigma.
Most of the social suffering families endure results from caring for the child who has ASD. First of all, parents suffer mentally from the stress of caring for a child with ASD, including symptoms of prolonged depression, anxiety, and anger (Gray, 2002, p.217). Equally problematic is the fact that caring for a child with ASD results in career problems, where limitations to one’s profession are the consequences of having to care for the child, and, in some cases, results in denial of opportunity for outside employment entirely (Gray, 2002, p. 218). This comes from the fact that many children who have a severe form of ASD require one-on-one assistance from a family member. On average, mothers of children with ASD earn 56%, or around $15,000 less than mothers of neurotypical children (Cidav, Marcus, & Mandell, 2012). Also, these same mothers are 6% likely to be employed and work, on average, seven less hours per week than mothers of children without a major health implication (Cidav, Marcus, & Mandell, 2012). Therefore, parents of children with ASD experience an enormous financial burden that affects all aspects of their families’ lives. Lastly, parents can experience physical suffering if the child with ASD becomes violent and aggressive (Gray, 2002, p. 220).
The financial burdens of families extend beyond care to encompass medication and behavioral treatment. People with ASD have increased rates of physical problems including insomnia, sleep latency, gastrointestinal diseases, and epilepsy (Murphy et, al, 2016, p.1675). Additionally, mental disorders such as Obsessive-Compulsive Disorder, attention-deficit hyperactivity disorder, psychotic disorders, mood disorders and anxiety disorders are comorbid with ASD (Murphy et al, 2016, p. 1676). Many of these disorders require medications and treatment that supplements the caregiving burden of families significantly.
One of the most pervasive problems experienced by parents of children with ASD is the transition from adolescence to adulthood for the person with ASD (Gray, 2002, p. 220). Initially, many young adults with ASD were institutionalized in a state facility for people with mental disabilities (Gray, 2002, p.220). Today, a small minority of adults with ASD live by themselves, while some are situated in long-stay institutions, but most still live at home with their parents (Henricks & Wehman, 2009, p.80). When adults with ASD stay at home well into adulthood, this leads to higher levels of stress and depression for the parents (Henricks & Wehman, 2009, p.80). In addition, the young adults with ASD also experience negative consequences including a lack of independence, social isolation, and a lack of contentment (Henricks & Wehman, 2009, p.80). One reason that adults with ASD co-reside with their parents is that finding suitable employment is very difficult, demonstrated by an employment rate of 25% (Henricks & Wehman, 2009, p.80). Social suffering, in this case, is a consequence of the inadvertent constraining agencies of institutions that turn away opportunities to adults with ASD. Thus, as more adults with ASD become unemployed, the more likely they are to live at home and create an environment filled with social suffering for the family.
Stigma and social suffering create an environment for families who have a child with ASD that is full of stress and dramatically interferes with daily life, leading to worse life and health outcomes for both the child with ASD and the family members. Many solutions have been created to help families cope with these burdens, but contain many drawbacks as well.
The first instance is respite care, which is the relief from the constant demands that come with having a child with ASD (Norton & Drew, 1994, p.71). This can come in two forms: informal care of friends and family without compensation, or formal care of a paid social service agency (Norton & Drew, 1994, p.71). Respite is very important because it provides parents with the opportunity to devote time to other demands (Oppenden, 2006, p.121). In addition, there is improved quality time with their child with ASD (Oppenden, 2006, p.121). However, respite options for parents are very costly, since the caretaker would have to be specialized in caring for kids with ASD, and the necessity for respite is very high in order for the parents to work and care for the household (Oppenden, 2006, p.121). As a result, this solution is not particularly viable for families in poverty and who can not seek the same opportunities as high and middle-class families.
In addition, current legislation in the United States, for example, has also assisted parents by easing the financial burden brought upon by medical bills and respite care. Under the Medicaid system, families living in states that enforce private insurers to have mandatory coverage for autism services have dramatically reduced health care costs (Parish et al, 2012). However, theses mandates are only covered in 26 states, isolating many families from receiving affordable health care services (Parish et al, 2012). As a result of the United States’ decentralized healthcare system, some families consequently pay more out-of-pocket for diagnostic and behavioral services that is otherwise covered in many other states. The financial burden itself creates social suffering for the family as private insurers constrain the agency of the parents.
The United Kingdom is another nation that has comprehensive ASD legislation where the government has mandated community services including ASD friendly services, quality diagnoses, and appropriate support for families covered under the public health insurance (Murphy et al, 2016, p.1671). However, most countries around the world have no specific legislation regarding services towards families that have a loved one with ASD, especially in lower income countries.
Even with these solutions, respite care and legislation have failed to provide equal outcomes for families who have a child with ASD. These are examples of neoliberalism in the realm of mental health where health care is seen as a commodity that is efficiently allocated to the market (Farmer et al, 2013, p. 88). As a result, the poorest people can not afford respite care since they are limited to how much they can contribute to the healthcare market. Additionally, in almost half of the states in the US, this is compounded by the failure of ASD services to be covered by private insurers, creating social suffering for those who can not afford the out-of-pocket expenditures (Parish et al, 2012) .
Stigma and social suffering are major concerns for families who have a child with ASD. Stigma of ASD appeared a century ago, and was legitimized through medical journals. Today, international organizations have made strides to reverse this stigma that has had such a detrimental effect on families. Additionally, social suffering resulting from stigma, constant caregiving, and general financial burden for families have solutions that preferentially treat those families that can afford the needed services. Thus, to address both stigma and social suffering equally among all of these families, I propose a four-point solution that will reduce stigma and provide equal, quality care that will diminish the financial and mental burden of those families who have a child with ASD.
First of all, I propose that major ASD support groups such as Autism Speaks can form partnerships with organizations to promote ASD-friendly businesses and events. Currently, in large, wealthy communities, sensory-friendly concerts are held that do not present overwhelming stimuli to children with ASD, allowing them and their parents to enjoy events they normally would not be able to. This idea can extend to other occasions such as movie theaters, where the volume and contrast of the films are turned down as to not inundate the kids. In addition, members of an organization can accompany families during their outings and make sure their experiences are conducted as smooth as possible. For example, when parents enter a major grocery store like Walmart, the child with ASD can be overwhelmed by the amount of people and the excessive noise level. However, this trip can be eased by having an employee trained in social work help the family retrieve groceries, manage confrontations with other customers, and normalize the harmlessness of the child by appearing friendly around him or her. This would decrease the stigma of other customers staring at the child, and also reduce the stress of the parents. This model can also be applied to zoos, professional football and baseball games, dentist offices, theme parks, and other community events.
Additionally, I propose that community health workers can be trained in caregiving services for families of a child with ASD, which follows a task-shifting model. This model was very successful during the DOTS campaign in Boston and Haiti, where accompagnateurs delivered antiretroviral therapy, provided psychosocial support, and connected patients to available resources (Behforouz, Farmer, & Mukherjee, 2004, p.S429). Accompagnateurs are respected members of the communities that provide a connection between the clinic and patients and ensure treatment adherence while providing additional support (Behforouz, Farmer & Mukherjee, 2004, p.S431). Similarly, accompagnateurs can be used to connect families and children with ASD to their schools, communities, and hospitals. This can be done in multiple ways: for one, accompagnateurs would ensure that children with ASD take their medications prescribed by doctors to treat behavioral issues, or comorbid diagnoses such as epilepsy (Murphy et al, 2016, p.1676). Additionally, accompagnateurs can be assigned to a select number of families and be on-call during working hours where they can watch the child with ASD if the parents need it. Finally, accompagnateurs can act as liaisons for local ASD organizations and present families with a comprehensive list of opportunities for families to pursue in regard to tutoring, psychological support, or other respite options. Most importantly, these accompagnateurs would be government workers that are supported in one’s government insurance package, or paid for by a non-governmental organization, reducing the cost of respite care significantly for families, and especially for those who usually cannot afford it.
Next, I propose official government legislation changes to alleviate social suffering of families that have a child with ASD. First of all, legislation can be introduced which covers all ASD expenditures under a suitable insurance plan for that specific country. This would lay the foundation, allowing a community-based care plan to be able to thrive, such as one centered around accompagnateurs. Additionally, more funding allocation towards special education programs in public schools that will emphasize soft skills and social interactions will significantly increase the chances that a child with ASD will be able to find employment after graduating. By giving kids with ASD more education, social suffering is reduced among the parents during the transition period after graduation. Additionally, special education programs in schools can work with other students to integrate kids with mild ASD into the normal school setting, alleviating some of the stigma from peers. For example, a “buddy system” can be put in place to match neurotypical students and other students with ASD, where lifelong relationships can form. Finally, legislation can be passed to increase the opportunities for adults with ASD to live away from home after graduating. This can most beneficially occur by creating living communities that are accessible for families to visit, relieving social suffering caused by an adult with ASD living with his or her parents.
Finally, I propose that ASD support groups become in contact with public school special education programs and create a well-documented list of local resources available for the child with ASD as well as their families. First of all, schools can present a calendar of autism-friendly events for kids with ASD to attend with their families. In addition, the programs can provide a list of housing options as well as employment options for after graduation. A written documentation of these lists can be given directly to the parents with contact information of each organization. Thus, with a clear set of options, parents of adults with ASD can have less social suffering in many aspects of their lives.
The applicability of these solutions is very broad: they can be implemented in the United States and to other countries worldwide. In fact, these solutions can greatly improve health outcomes of parents in poorer countries that have a child with ASD, especially regarding government subsidized respite options and community health workers. The implementation of these solutions will vary from nation to nation depending on whether the healthcare system is public or private and centralized or decentralized.
However, the principles of improving a family’s well-being through reducing stigma and social suffering still remains a powerful motivator. A community approach that involves an integrated system of hospitals, local organizations, public schools, and housing centers can be effective in reversing the habitualized stigma and reduce social suffering of parents and their child with ASD. ASD is a family burden and it takes a multilateral solution to help these families live a life filled with more satisfaction, free of any financial or mental burdens.
Illustration: Lauren Tamaki, obtained from www.todaysparent.com/family/living-with-autism/
Bibliography
Behforouz, H., Farmer, P., & Mukherjee, J. (2004). From Directly Observed Therapy to Accompagnateurs: Enhancing AIDS Treatment Outcomes in Haiti and in Boston. Clinical Infectious Diseases, 38(5), S429-S436
Berger, P., and Luckmann, T. (1966). The Social Construction of Reality: A Treatise in the Sociology of Knowledge. London: The Penguin Group.
Bleuler, E. (1911). Dementia Praecox oder Gruppe der Schizophrenien. G. Aschaffenburg (Ed.). Leipzig: Deuticke.
Cidav, Z., Marcus, S., & Mandell, D. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617-624.
Cohmer, S. (2014). Early Infantile Autism and the Refrigerator Mother Theory (1943-1970). Embryo Project Encyclopedia. Accessed at http://embryo.asu.edu/handle/10776/8149.
Drew, N., Funk, M., Tang, S., Lamichhane, J., Chavez, E., Katontoka, S., Pathare, S., Lewis, O., Gostin, L., & Saraceno, B. (2011). Human rights violations of people with mental and psychosocial disabilities: an unresolved global crisis. Lancet, 378(6), 1664-1675).
Farmer, P., Kim, J., Kleinman, A., & Basilico, M. (2013). Reimagining Global Health: An Introduction. Los Angeles, CA: University of California Press.
Gray, D. (1993). Perceptions of stigma: the parents of autistic children. Sociology of Health & Illness, 15(1), 102-120.
Gray, D. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215- 222. doi: 10.1080/136682502100000863 9
Hendricks, D. & Wehman, P. (2009). Transition From School to Adulthood for Youth With Autism Spectrum Disorders: Review and Recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77-88. doi: 10.1177/1088357608329827
Kanner, L. (1943) Autistic Disturbances of Affective Contact. Pathology, 217-250.
Kata, A. (2009). A postmodern Pandora’s box: Anti-vaccination misinformation on the Internet. Vaccine, 28(7), 1709-1716. doi: 10.1016/j.vaccine.2009.12.022
Kleinman, A., Das, V., and Lock, M. (1997). Social Suffering. Berkeley: University of California Press.
Kopetz, P., and Endowed, D. (2012). Autism Worldwide: Prevalence, Perceptions, Acceptance, Action. Journal of Social Sciences, 8(2). 196-201.
Minkowski, E. (1933) Etudes phénoménologiques et psychopathologiques. Paris: Coll. De l’Evolution Psychiatrique.
Murphy, C., Wilson, C., Robertson, D., Ecker, C., Daly, E., Hammond, N., Galanopoulos, A., Dud, I., Murphy, D., & McAlonan, G. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, 12, 1669-1686. doi: 10.2147/NDT.S65455.
National Health Statistics Reports. (2015). Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey (DHHS Publication No. 2016-1250). Washington, DC: U.S. Department of Health and Human Services.
Norton, P. & Drew, C. (1994). Autism and Potential Family Stressors. American Journal of Family Therapy, 22(1), 67-76.
Openden, D., Symon, J., Koegel, L., & Koegel, R. (2006). Developing a student respite provider system for children with autism. Journal of Positive Behavior Interventions, 8(2), 119-123.
Parish, S., Thomas, K., Rose, R., Kilany, M., & McConville, R. (2012). State Insurance Parity Legislation for Autism Services and Family Financial Burden. Intellectual and Developmental Disabilities, 50(3), 190-198.
Reynolds, C., & Kamphaus, R. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Washington, DC: American Psychological Association.
World Health Organization. (2015). Global Health Estimates 2015: DALYs by age, sex and cause [Data file]. Retrieved from http://www.who.int/healthinfo/global_burden_disease/estimates/en/index2.html
World Health Organization (2017, May 19-24). Sixty-Seventh World Health Assembly: Comprehensive and coordinated efforts for the management of autism spectrum disorders. Retreived from http://www.who.int/mental_health/maternal-child/WHA67.8_resolution_autism.pdf?ua=1
Yang, L., Kleinman, A., Link, B., Phelan, J., Lee, S., & Good, B. (2007). Culture and stigma: Adding moral experience to stigma theory. Social Science & Medicine, 64, 1524-1535. doi: 10.1016/j.socscimed.2006.11.013.
Behforouz, H., Farmer, P., & Mukherjee, J. (2004). From Directly Observed Therapy to Accompagnateurs: Enhancing AIDS Treatment Outcomes in Haiti and in Boston. Clinical Infectious Diseases, 38(5), S429-S436
Berger, P., and Luckmann, T. (1966). The Social Construction of Reality: A Treatise in the Sociology of Knowledge. London: The Penguin Group.
Bleuler, E. (1911). Dementia Praecox oder Gruppe der Schizophrenien. G. Aschaffenburg (Ed.). Leipzig: Deuticke.
Cidav, Z., Marcus, S., & Mandell, D. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617-624.
Cohmer, S. (2014). Early Infantile Autism and the Refrigerator Mother Theory (1943-1970). Embryo Project Encyclopedia. Accessed at http://embryo.asu.edu/handle/10776/8149.
Drew, N., Funk, M., Tang, S., Lamichhane, J., Chavez, E., Katontoka, S., Pathare, S., Lewis, O., Gostin, L., & Saraceno, B. (2011). Human rights violations of people with mental and psychosocial disabilities: an unresolved global crisis. Lancet, 378(6), 1664-1675).
Farmer, P., Kim, J., Kleinman, A., & Basilico, M. (2013). Reimagining Global Health: An Introduction. Los Angeles, CA: University of California Press.
Gray, D. (1993). Perceptions of stigma: the parents of autistic children. Sociology of Health & Illness, 15(1), 102-120.
Gray, D. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215- 222. doi: 10.1080/136682502100000863 9
Hendricks, D. & Wehman, P. (2009). Transition From School to Adulthood for Youth With Autism Spectrum Disorders: Review and Recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77-88. doi: 10.1177/1088357608329827
Kanner, L. (1943) Autistic Disturbances of Affective Contact. Pathology, 217-250.
Kata, A. (2009). A postmodern Pandora’s box: Anti-vaccination misinformation on the Internet. Vaccine, 28(7), 1709-1716. doi: 10.1016/j.vaccine.2009.12.022
Kleinman, A., Das, V., and Lock, M. (1997). Social Suffering. Berkeley: University of California Press.
Kopetz, P., and Endowed, D. (2012). Autism Worldwide: Prevalence, Perceptions, Acceptance, Action. Journal of Social Sciences, 8(2). 196-201.
Minkowski, E. (1933) Etudes phénoménologiques et psychopathologiques. Paris: Coll. De l’Evolution Psychiatrique.
Murphy, C., Wilson, C., Robertson, D., Ecker, C., Daly, E., Hammond, N., Galanopoulos, A., Dud, I., Murphy, D., & McAlonan, G. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, 12, 1669-1686. doi: 10.2147/NDT.S65455.
National Health Statistics Reports. (2015). Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey (DHHS Publication No. 2016-1250). Washington, DC: U.S. Department of Health and Human Services.
Norton, P. & Drew, C. (1994). Autism and Potential Family Stressors. American Journal of Family Therapy, 22(1), 67-76.
Openden, D., Symon, J., Koegel, L., & Koegel, R. (2006). Developing a student respite provider system for children with autism. Journal of Positive Behavior Interventions, 8(2), 119-123.
Parish, S., Thomas, K., Rose, R., Kilany, M., & McConville, R. (2012). State Insurance Parity Legislation for Autism Services and Family Financial Burden. Intellectual and Developmental Disabilities, 50(3), 190-198.
Reynolds, C., & Kamphaus, R. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Washington, DC: American Psychological Association.
World Health Organization. (2015). Global Health Estimates 2015: DALYs by age, sex and cause [Data file]. Retrieved from http://www.who.int/healthinfo/global_burden_disease/estimates/en/index2.html
World Health Organization (2017, May 19-24). Sixty-Seventh World Health Assembly: Comprehensive and coordinated efforts for the management of autism spectrum disorders. Retreived from http://www.who.int/mental_health/maternal-child/WHA67.8_resolution_autism.pdf?ua=1
Yang, L., Kleinman, A., Link, B., Phelan, J., Lee, S., & Good, B. (2007). Culture and stigma: Adding moral experience to stigma theory. Social Science & Medicine, 64, 1524-1535. doi: 10.1016/j.socscimed.2006.11.013.
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
