Autism: What You Need to Know To Fight For ASD Rights and Against Stigma

This piece is part of Mental Health Week, hosted by The Political Revolution. Check it out over on reddit.

Autism is an increasingly misunderstood mental disability that carries with it its own stigma. Autism was first discovered in the early 20th century but it wasn’t until 1987 that it actually became recognized as “Autistic Disorder” in the Diagnostic and Statistical Manual of Mental Disorders- Third Edition (DSM-III), and it wasn’t until 1991 that schools begin to identity and serve students with Autism following the federal government decision to make Autism a special education category. Experts are still learning about ASD (Autistic Syndrome Disorder) and what causes it and how to help affected individuals. Because of that, and because of the stigma surrounding mental health in our society, ASD individuals are often overlooked and marginalized.

Autism is a spectrum disorder that is defined by developmental disabilities or ongoing social problems that include difficulty communicating and interacting with others. Autism is diagnosed by identifying certain behaviors. Typically, these behaviors fall into two categories, repetitive behaviors and social interaction behaviors. There is no cure to autism, but increased awareness and early diagnosis are key in having sustainable, positive outcomes.

Because of the lack of knowledge and available resources, there’s a lot of misinformation floating out there about autism. Not only that, the inherent stigma surrounding mental health in our country make it extremely hard living with this condition. First of all, it’s a spectrum. The spectrum is classified from “high-functioning” to “low-functioning.” With Asperger’s Syndrome considered on the high-functioning end, low-functioning on the spectrum is a bit more apparent with thinks like language delays and more severe symptoms.

It’s not just the emotional cost of living with ASD that’s high, it’s the cost of living as well. One of the major oppressions inherent in our healthcare system is the extensive costs for services that don’t meet the standard of some aspects needed in the daily life of those dealing with ASD. The same medical infrastructure that also applies to those dealing with mental health issues has similar plauges, a journey akin to the pipeline for psychiatric medications and consultations rather than constructive forms of therapy and rehabilitation. Many of the skills-based rehabilitation services can offer valuable support to those dealing with spectrum disorders all the same, but undervaluing and lack of funding for this support system is another case example of a lack of understanding what needs investing. It’s a lifelong debilitating condition, and the costs are gargantuan.

Facts and Statistics:

• About 1 percent of the world population has autism spectrum disorder. (CDC, 2014)
• Prevalence in the United States is estimated at 1 in 68 births. (CDC, 2014)
• More than 3.5 million Americans live with an autism spectrum disorder. (Buescher et al., 2014)
• Prevalence of autism in U.S. children increased by 119.4 percent from 2000 (1 in 150) to 2010 (1 in 68). (CDC, 2014) Autism is the fastest-growing developmental disability. (CDC, 2008)
• Autism services cost U.S. citizens $236–262 billion annually. (Buescher et al., 2014)
• A majority of costs in the U.S. are in adult services — $175–196 billion, compared to $61–66 billion for children. (Buescher et al., 2014)
• Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention. (Autism. 2007 Sep;11(5):453–63; The economic consequences of autistic spectrum disorder among children in a Swedish municipality. Järbrink K1.)
• The U.S. cost of autism over the lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability. (Buescher et al., 2014)

$2.4 Million. That’s the cost it takes from one person’s life. This is just one of the many reasons we need a Medicare-for-All system. One where pre-existing conditions aren’t marginalized. One where the costs of living with autism or any lifelong disability doesn’t bankrupt you.

One of the troubles in our world today is that the current and only way to really break through some of the barriers in our problematic systems is that it is unforgiving — people suffering from the condition have to fight for themselves. That’s the only way one can advocate for their right to express and grow themselves despite any limitations.

So let’s fight together. You can help raise awareness and fight for equal rights for individuals living with ASD in several different ways. Join a local Autism awareness group or donate. Another thing you can do is call or write your representative to pass the Working in collaboration with other national organizations to pass the Achieving a Better Life Experience (ABLE) Act, which allows families of children living with disabilities to save for college and other expenses in tax-deferred accounts without losing access to critical federal safety nets. Here are some of the other public policy pieces that have impact on the Autistic community:

• Medicare/Medicaid and fighting for equal coverage under state insurance laws can provide effective treatment for individuals with an autism diagnosis
• Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, which provides for interagency coordination of autism services with the federal government and provides for research funds for autism
• Keeping All Students Safe Act, legislation regulating restraint and seclusion
• Individuals with Disabilities Education Act (IDEA), enabling students with disabilities to receive a fair and appropriate education.

Source: autism-society.org

On top of the pre-existing stigma surrounding mental health, the obscurity and lack of knowledge surrounding spectrum disorders like Autism make it hard to shed light on the realities of living with a disorder like this. It’s our job as advocates to educate those around us, and empower our friends and families living with ASD. It’s a lifelong disorder, but it doesn’t have to be so debilitating. Let’s fight for a Medicare For All system in which pre-existing conditions like ASD get the full coverage they need to lead a healthy, happy life without financial burden. Let’s fight for more federal funding for research into ASD. Let’s fight for increased support for people living with ASD in our education system. Finally, let’s fight for a stigma-free America where living with ASD or any sort of mental condition isn’t marginalized and misunderstood.