Myths and misunderstandings people hold about autism spectrum disorder still exist and reflect the attitudes of our society.
There are consequences of not recognizing the importance of supporting youth with autism, especially when transitioning into adulthood. People with autism that exit secondary education encounter significant gaps in service programs that provide essential life skills such as job training, social support and inclusion, and higher education. While many youth-targeted skills-building programs exist for children, these services often end for those on the spectrum when they become adults. For those under the age of 21 they are legally entitled to these programs, but the legal system stops short there. According to one study in 2012, over one half of youth with autism had no employment or educational activity within the first two years after high school (Autism Speaks, 2018). Access and advocacy seems to wane considerably for adults with autism who wish to continue building on their strengths and abilities. This impacts their ability to find employment as well as education, meaning their ability to find empowerment is also impacted. This segregates the autistic adult population from their communities, further impacting their quality of life (White, 2014).
Some of the adversities those with autism encounter often involve resulting feelings of exclusion from their community and greater society. To find accurate depictions of such cases, one must research written testimonies of those with autism to capture not only the scope of the matter but also the depth. When reading the challenges people with autism endure the focus is on the handicaps of interacting with the world, yet not the other way around of how the world interacts with ASD. Such lack of perspective and insight into the importance of how one’s community and culture treats them is perhaps the biggest issue of all when someone with autism enters adulthood. Since inclusion, or lack thereof, can stem as early as adolescence, it’s no wonder that children with autism are at a higher risk for bullying (Autism Speaks, 2018). Not having the skills to verbally communicate, to understand the same level of academics, or to engage in the same activities already sets autistic children apart from their peers. This allows the misunderstandings children have to foster into prejudgments about autism and its conditions as they age into adulthood. The conceptions that people with autism all flap their hands, are intellectually disabled, or can’t express or read emotions aren’t true. In fact, these attitudes are very psychologically damaging. In truth, the meaning of spectrum disorder can help us better understand this neurological disorder. This means for each person born with autism the symptoms (such as cognitive, physical, or psychological impairments) and experiences (abilities to cope, adapt, and problem-solve) will be different from the next person (Autism Speaks, 2018).
Personal experiences vary vastly and the resulting effects of stereotyping, bullying, exclusion, and lack of social support can be exceptionally long-lasting and damaging. This means we are verily damaging part of our communities and society. It’s important that we create and promote awareness about the misconceptions and myths about autism and its symptoms. We must address how we can meet the needs of communication and relationships, causes of neurological or biological symptoms, and prevalence of those symptoms within people with autism. As autism spectrum disorder knows no race, gender, culture, geographic location nor intelligence level, not servicing the needs of those with autism making life transitions is unstitching the very fabric lines of a functioning, happy, thus successful society.
Before considering contributing factors that impact people with autism it’s important to consider first the impacts of having an inability to effectively communicate one’s dislikes, needs, or desires.
For children and adults with autism this is an exceptionally challenging obstacle faced each day. This can mean the inability express one’s self, feelings, or dreams, too. Thus, the inability to communicate distress becomes stressful in itself. This matters greatly in our world as lack of communication can affect successfully building relationships, abilities to read emotions and events from multiple viewpoints, finding one’s personal strengths and skills, growing problem-solving capabilities, and more, all of which affect quality of life. Thus, resilience, feelings of satisfaction, sense of belonging, sense of achievement, and working well with others can be negatively impacted or even halted for those living with autism. This matters greatly at the macro level of societal inclusion and interaction. Transitions become increasingly difficult with age if education and support systems aren’t available to identify solutions where communication is difficult or absent (Raising Children, 2017).
The most pressing micro factors impacting people with autism are the reactions and lack of support received from their own families. Not understanding the root of autistic symptoms such as over-excitement, the inability to effectively communicate, and even aggressiveness, often cause mixed or negative emotions in parents, caregivers, and siblings. Anxiety, guilty, and even anger are rather common in those caring for children with autism, and for adults with severe symptoms. Concerns and fears about how a child can or can’t cope now as well as in the future builds upon the worry and anxiety, creating sadness and sometimes grief in parents and caregivers. While parenting in itself is well known to be stressful, parenting a child with autism can be doubly so because of the spectrum disorder’s unique characteristics (Brazier, 2016). This means transitions are exceptionally challenging to learn and cope with, especially when a youth with autism is leaving secondary education and needs to figure out what’s next.
It’s proven that positive relationships help build strength and resilience. The ability to connect with others plays a vital role in taking on the tough challenges of life for children living with autism, and in general for those with any disability. Hence, a correlation can be found within the mezzo levels between leaving secondary education and the rate of unemployment for those entering adulthood. In a 2015 article reported by Autism Society, 70% or more of those with disabilities wouldn’t have jobs the following spring when they graduated or exited secondary education. While schools do all they can to maintain the requirements of each student’s Individual Education Plan, this may achieve an academic standard but does not provide necessary job skills and knowledge. Sometimes because schools are so overwhelmed with meeting the needs of every student usually with a short number of staff, information and knowledge of community based programs that can help youth and their families seek further education and skills training is lacking or nonexistent. Families can often feel alone and unsure what to do next for their children with autism (Badesh, 2016). This means a youth with autism transitioning into adulthood won’t have the same opportunities as other citizens of their community have such as working towards earning a paycheck, earning and saving money, making contributions to their community and larger society, thus negatively impacting their dignity and level of independence altogether. In a truthful sense, this means part of our community is left out and neglected.
There have been successful endeavors to address the needs of this small yet important population group.
Organizations are aiming to provide resources that go beyond support and education. Advocates and service workers have looked at extending programs or enhancing them to encompass the rights and needs of young adults with autism who seek to work, live, and play in their communities. One method is to collaborate with businesses, large and small, to educate them on the benefits of hiring people with autism. Such benefits would include strong work ethics and the ability to direct attention to specific tasks. Grit and resilience are also noticeable qualities possessed by those with autism. Organizations like Autism Speaks and the Vocational Independence Program have established support programs that include job coaches, vocational training, and networking systems that both employees and employers can utilize. These agencies are dedicated to promoting solutions across the spectrum while tapping into the benefits of partnering with the communities they work in (White, 2014). This helps increase acceptance and understanding not only of the spectrum disorder but also helps those with autism ease into adulthood while maximizing their potentials.
Understandings of and having insights to what the disorder feels like is growing, in part because of people with autism sharing their stories. Personal blogs, published stories, and agencies focused on promoting positive awareness have shed light on the values and benefits of inclusion of people with autism. Even this author was inspired to create her own publication that includes her personal journey and personal research of autism. Science sees boosts in discoveries such as biological research continuing to be foundational when studying the neurology of a brain with autism. Researchers and scientists have begun linking intestinal and eating disorders with autism, finding evidence that digestive complications, just like neurological ones, also stem when in utero (Weir, 2016).
Luckily for the spectrum disorder there is a growing surge of not only autism support but also research on how effective that support is. As such, the United Cerebral Palsy was able to produce a 2016 report detailing scores of data that highlighted what successful program key areas are. Such domains include promoting independence and keeping families together, and how states individually provide these services but also how they may learn from other states. The report also compared the results to showcase where improvement can be made for each state. Our state of Vermont continuously ranks second in our nation overall in both practice of inclusion and best performing status. Vermont ranks low in the subcategory of reaching those in need due to our rural and remote geographic areas, coming in as thirty-second in the nation, but we do rank sixteenth in keeping families together and rank number one in promoting independence (Bragdon, 2016). This means our state can continue to provide much needed services for those with autism while be a role model of successful system practices.
When looking at meeting and matching the needs of those with autism we can find many organizations that strive for this in the town of St. Johnsbury, Vermont, which acts an integral hub for our northeast kingdom community. One example would be Kingdom Autism and Behavioral Health, a teaching-based organization that provides multiple levels of health intervention from early to intensive for children. A particularly important agency in this area is Northeast Kingdom Human Services. NEKHS is a vital part of our northeast kingdom area as they provide services for all ages such as counseling services, community rehabilitation, family based programs, and services not just for autism but those with mental illness or substance abuse problems as well. And if a youth with autism so desired, Seven Stars is available for those seeking opportunities outside of the standard family environment. As a boarding school in Sharon, Vermont, Seven Stars supersedes the regular school model with providing youth engaging, active, and nature-based academic settings to help foster their learning.
This all ties together with recognizing the especially difficult challenges of transitioning to adulthood. Only where social skills, identity exploration, and outlets for creativity and expression are provided can youth – no matter what the disability – succeed in achieving their goals. This means that allowing youth with autism to reach their full potentials will raise successful adults with autism. Organizations like the College Steps program help meet the needs of transitioning youth in providing peer to peer support academically, socially, vocationally, and occasionally with skills that pertain to independent living. Through College Steps adults with autism have access to tools and support that will increase independence, social skills, and academic skills. Students gradually work towards gaining experience that can lead to internships and professional work, all of which helps boosts their confidence. College Steps also partners with Vocational Rehab, all to meet the goals that lead to more fulfilling lives such as balancing finances, building resumes, discussing relationship issues, and experiencing how to advocate for themselves.
To note, the demand for employing those with autism, from both business owners to lawmakers, has risen over the past years and goes beyond the conventional models: restaurants, sports teams, and places of worship have all seen the rewards of including people with autism in their businesses or programs. Further, education based environments have made progressive efforts by implementing early intervention practices to address the needs of autism spectrum disorder. The rise of autism awareness has actually created more jobs in special education, in turn creating more demand for quality training programs. Ultimately this comes at the work of national efforts influenced by the cultural shifts in our society. Such measures can be seen such as in 1990 when the Americans With Disabilities Act was implemented to prohibit discrimination in employment and public services for those with disabilities. Similarly, the Telecommunications Act that came out in 1996 helped provide easily-accessible and sometimes life-saving communication services for people with disabilities. Even continuous amendments to the Individuals With Disabilities Education Act has shown our persistence in improving upon meeting the needs of everyone in our communities (Portland State University, 2018).
Establishing and strengthening job opportunities is crucial for those with autism. People with autism are just as mission driven and entrepreneurial as the very business owners and law makers are. Inclusion is necessary for the cohesion and progression of any community, to the greater benefit of society. Specific laws in the United States have been installed over the past few decades that help protect people with disabilities from discrimination while also providing equal opportunities to education, services, and civil rights that all Americans should have. These are positive and impactful steps, yet, there are still global measures we must all still take.
Indeed the demand for inclusion of those with disabilities, such as autism spectrum disorder, is rising to a national level.
From business employers to lawmakers, a shift has been seen in how people treat each other. There is a defiant call to stop limiting the access to opportunities those with disabilities encounter every day. For just one example, even mainstream media has shifted from promoting misconceptions about autism to sharing success stories. Providing opportunities for youth with autism provides opportunities for communities which ultimately impacts the decisions made by those who represent all of us. This shows when see programs that reach all ages and backgrounds of people regardless of their disabilities. Natural and communal supports are clearly observed as a positive tool in job skill growth for both employees and employers (Long, 2012). In short, as long as associations and lawmakers continue to meet and discuss the needs of those with disabilities, we’ll continue to better understand and provide opportunities for those with autism. However, in order to achieve this we must continue to raise awareness about the discriminations those with autism endure as this is not just a national issue but a global one.
Cross culturally, autism doesn’t receive the same understanding or care as in other nations. Comparatively, people with autism continue to be marginalized specifically in South Korea and Africa. In fact, Asian and African cultures represent the disproportionate rates of diagnosis in children with the spectrum disorder. It doesn’t help any further that international collaboration efforts are often weak or non-existent when attempts are made to collect ASD data. Stigma is so strong in these cultures, regardless the prevalence of autism diagnosis rates, that parents and caregivers often report they feel helpless in their circumstances (Charron, 2017). In turn, this causes global factors to drive the misunderstandings and myths of autism.
However, this doesn’t mean there aren’t international efforts working together to better the lives for people with autism. The International Society for Autism Research is a perfect example where parents, professionals, and scientists come together to collaborate and share what they have learned. INSAR opens its membership to all kinds of researchers from students to doctors. There are also other international efforts to bring about awareness and education such as the many conferences held across the globe. The 5th World Autism Organization International Congress 2018 just met in the middle of November in Houston, Texas. Every three years, Autism-Europe organizes an International Congress that works with other membership organizations (due to meet in 2019). And on the national level, the 13th Annual Autism Conference hosted by the Association for Behavior Analysis International will be held in January in ever progressing San Francisco, California.
We are working towards that point of recognition that autism spectrum disorder and those with autism are deserving of our respect and understanding. Quite simply, ASD transcends culture, ethnicity, and geographic boundaries, and it is not limited to Western or technologically advanced societies. While early intervention, up to date diagnostic practices, and longitudinal studies are vital to supporting and guiding children with autism in their transition to adulthood, it is just as important to consider how family, culture, and community will impact their experience in this life as well. For those reasons alone no society can hope for a brighter tomorrow without implementing similar successful tactics that target the disparages of lack of understanding of inclusion of people with autism.
This is an approved research paper penned and submitted by Sabra Anne Snyder for PSY-2270 Introduction to Human Services to Professor Dr. Rhonda Koral at NVU-Lyndon. Any references, quotes, or any other extrapolation from the text above should credited accordingly, as well as the original sources themselves.
Association for Behavioral Analysis International, 2018, https://www.abainternational.org/events/autism-2019.aspx
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Long, L. (2012). Employment for adults with autism and other developmental disabilities. Exceptional Parent. n. 3, page 56. Retrieved from http://nvu-proxy.libraries.vsc.edu/login?url=http://search.ebscohost.com/login .aspx?direct=true&db=edsgao&AN=edsgcl.351950435&site=eds-live
Northeast Kingdom Human Services, 2018, http://www.nkhs.org/services.html
Portland State University. (2018). Disability rights laws. Academic Autistic Spectrum Partnership in Research and Education. Retrieved from https://autismandhealth.org/?a=pt&p=detail&t=pt_aut&s=aut_laws&theme=lt&
Weir, K. (2016). New insights on eating disorders. American Psychological Association, 47(4). Retrieved from https://www.apa.org/monitor/2016/04/eating-disorders.aspx
Raising Children. (2017). Family relationships and autism spectrum disorder. Raising Children Network. Retrieved from https://raisingchildren.net.au/autism/communicating-relationships/family-relationships/family-relationships-asd
White, T. (2014). Finding the best employers for young adults on the spectrum. Exceptional Parent. Volume 44, n. 4, page 42. Retrieved from http://nvu-proxy.libraries.vsc.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=edoAN=95432644&site=eds-live
World Autism Organization, 2018, http://worldautismorganisation.com/category/wao-2018-16/