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Autism Rights Issues 

Written by Julian McCarthy, Holly Shan, Paige Hewitt, and Erin Neely

Transition to Adulthood

One of the number one struggles people with ASD face is the transition to adulthood. This critical time period encompasses going to college and selecting a career path with the ultimate objective of joining the workforce. A recent study found that people with ASD have the lowest employment rate out of any disability group (Baldwin et al, 44). 70% of adults with autism are unemployed. Hence, it is of the utmost importance that we work towards creating resources that will allow people with ASD to achieve their full potential. For many, this could result in employment, living independently, and fostering meaningful relationships with peers. Ultimately, everyone benefits when we bring people with ASD into the fold. 

Young adults with autism have lower employment rates as well as higher rates of complete social isolation. According to a report published by the AJ Drexel Autism Institute, ⅔ of young adults with autism were  unemployed and didn’t have any plans to pursue further education 2 years after high school. This also unfortunately continued into their early 20s. Only 58% of people with autism in their 20s were employed. These results came from longitudinal studies. 

Why has this occurred? One of the reasons could be due to a shift in the balance of jobs from the manufacturing sector to the service sector. Jobs in the service sector typically require a lot of social interaction, and all of this social interaction can be difficult for those with autism. 

Another factor is the sudden shift that occurs after high school. Throughout their time in school, special education services are available to those with autism. Unfortunately, they graduate high school, those services go away. Public services for adults exist, however, they are more difficult to access. Community programs for adults with autism usually only have the capacity to help those who are severely affected. 

Adults with autism also lack social support. 1 in 4 young adults with autism are completely socially isolated. 

A lot of autism research and programs are dedicated to children with autism. However, just because someone turns 18 does not mean that autism disappears. They will still face similar problems to the problems they faced in childhood. I believe that the formation of more community services and support systems for adults with autism on all parts of the spectrum would be one of the best solutions to solving the problems that adults with autism face.

Law Enforcement Violence

A study conducted by Julianna Rava found that younger people with autism spectrum disorder have disproportionately high rates of interactions with law enforcement. In fact, 20% of people with ASD under 21 have had a run in with the police. Some of these run-ins have resulted in tragedy to the both individual with ASD and the first responder. These encounters can be incredibly dangerous because individuals on the autism spectrum often have a hard time communicating their feelings and controlling their emotions. These conditions can escalate during stressful situations and lead to violence. Therefore, there is a serious need for police training to prepare officers to interact with people on the spectrum. Many states like Florida, New Jersey, and Pennsylvania have already taken protective measures and passed legislation that requires police officers to go through autism awareness training, so they can effectively handle situations with people on the spectrum. It is essential that this kind of legislation is passed on the federal level because it will save lives. 

Access to Therapy

Current national discussion focuses on one particular treatment modality called Applied Behavioral Analysis (ABA). More information on ASD therapies can be found on our website under “resources” or clicking here. Federal Medicaid programs may reimburse services for ASD through section 1905(a) of the Social Security Act, section 1915(i) state plan Home and Community-Based Services, section 1915(c) and Community-Based Services (HCBS) waiver programs and section 1115 research and demonstration programs. 

 

These federal guidelines, however, are not implemented in the same way amongst states or even counties. The role of states is to ensure all services are covered and available and ensure families of enrolled children are aware of the access to services covered by 1905(a). Some families are on the waiting list to get ABA therapy for their children with ASD that can take years. 

 

Realities like these have promoted parents to file class action federal lawsuits against state Departments of Health and Human Services. They argue that the Medicaid reimbursement rate for ABA is “among the worst in the nation and  has severely limited and will continue to limit children’s access to medically necessary legally required treatment (Ollove, 2018).”

Access to Medical Care

Compared to the general population, adults with ASD are less likely to receive important preventive care and more likely to have unmet healthcare needs (Nicolaidis et al. 2013). They reported less effective patient-provider communication, and their providers in turn have reported being uncomfortable with their lack of training to treat this population. This is especially concerning as autistic adults have higher rates of many health problems like obesity, diabetes, heart disease, autoimmune disorders, gastrointestinal issues, sleep disorders, and psychiatric problems (Opar 2018). Some providers have become "autism-friendly" by walking patients through procedures beforehand, allowing accommodations like voice output devices, encouraging advocates to come to the office with patients, and making their offices less overwhelming to the senses, but there are not enough of these providers. Ultimately, work needs to be done to help all healthcare providers work with autistic patients. 

Abuse in Homes, Schools and Facilities

According to Marina Saris, 25% of autism youth admitted to a psychiatric facility have a history of physical, mental, and emotional abuse. Children with disabilities are more likely to be neglected and not receive the attention necessary for them to reach their full potential. In addition, girls with autism are three times more likely to be sexually abused compared to other girls (Zeliadt 2018), and children with intellectual disabilities have a sevenfold increased risk of being sexually abused (Autism Speaks). Abusers target these populations because they may not understand social norms, may be easy to manipulate, and may have a harder time reporting their abuse. Abuse can have a lasting impact on individuals on the autism spectrum, as demonstrated by the high rate of PTSD within the ASD community. It is essential that people are made aware of how vulnerable people with autism are to abuse, so they can successfully intervene.

Filicide

Filicide is a legal term for a parent killing their child, but is also the term used in the disability community for any parent, relative or caregiver murdering a disabled person. The Autistic Self-Advocacy Network (ASAN) is aware of at least 600 such murders in the past five years alone, but the true number is likely much greater because filicide is so underreported. Filicide is always wrong, but when the victim is disabled those in the media tend to "portray these murders as justifiable and inevitable due to the 'burden' of having a disabled person in the family" (ASAN, 2020). It is true that we as a society need to do a better job providing services to these families, but a lack of support is never an excuse for murder. 

External Links

Baldwin, S., Costley, D. & Warren, A. Employment Activities and Experiences of Adults with High-Functioning Autism and Asperger’s Disorder. J Autism Dev Disord 44, 2440–2449 (2014). https://doi.org/10.1007/s10803-014-2112-z
Sarris, Marina. “Abuse and PTSD Among Youth with Autism.” Abuse and PTSD Among Youth with Autism | Interactive Autism Network, 15 Nov. 2018, iancommunity.org/aic/abuse-and-ptsd-among-youth-autism.
“Why Police Need Training to Interact with People on the Spectrum.” Spectrum, 6 June 2018, www.spectrumnews.org/features/deep-dive/police-need-training-interact-people-spectrum/.

https://www.medicaid.gov/medicaid/benefits/autism-services/index.html

 

https://www.medicaid.gov/sites/default/files/2019-12/asd-state-of-the-states-report_0.pdf

https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2018/06/12/children-with-autism-left-behind-by-low-medicaid-rates

https://www.spectrumnews.org/news/girls-autism-high-risk-sexual-abuse-large-study-says/

https://www.autismspeaks.org/recognizing-and-preventing-sexual-abuse

https://autisticadvocacy.org/wp-content/uploads/2015/01/ASAN-Anti-Filicide-Toolkit-Complete.pdf

https://www.spectrumnews.org/features/deep-dive/healthcare-system-failing-autistic-adults/

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