Autism and Institutionalization: Lessons from the Past

By Redmond Roxas

As you might have gathered from my past articles, I’m quite interested in the mental health field. My studies involve not just learning the epidemiology of mental illnesses, but also the treatment and life course of the people that live with them. But no matter how many textbooks you read---or how many scientific publications, news articles, or documentaries you see---nothing quite beats the insight of being boots on the ground, experiencing cases firsthand.

For awhile I have been working as a residential counselor in a group home housing many individuals on the Autism spectrum. The training that myself and other counselors receive follow a very strict set of guidelines emphasizing the importance of promoting initiative and self-responsibility among the individuals in our care. As such, individuals are encouraged to do chores, schedule routines, and plan trips on their own, with assistance if needed. Although we do have training to respond to severe incidents (i.e., physical altercations), in general the philosophy of control and restriction prevalent in past institutions has been discarded in favor of the philosophy of teach and advise.

What brought about this change? Past mental health care services were designed around the widely spread notion that such people were more of a danger to themselves and others. And while indeed there are severe cases that warrant full supervision, the stereotype of the helpless, hapless invalid translated into a blanket policy of restriction. Unfortunately, this led to a rather dark chapter in the history of the US mental health system, as the thousands of patients residing in mental asylums across the nation suffered from unsanitary conditions, a lack of basic freedoms, and inadequate personal care due to overworked and understaffed health workers. Furthermore, these terrible working conditions also bred cases of abuse where overstressed workers took out their frustrations on patients (Pollack & Bagenstos, 2015).

Aside from serious issues care with abuse and maintaining standards of care, even the most ideal conditions within the institutional model can prove to be detrimental to the development of those with Autism. The most successful therapies following the methodology of Applied Behavioral Analysis require high levels of given attention by teachers and caregivers, as well as a significant level of freedom of movement. Also from a more general standpoint, more intimate caregiving in settings such as loving foster homes have been found to be more beneficial to the development of a child with Autism compared to institutional settings (Levin et al., 2015).

Despite a significant body of evidence showing institutionalization as being detrimental as a whole to the further development of people with Autism and the greater population of the mentally ill, there are many that would support a return to the era of mental asylums. In today’s unpredictable world, where controversy around hot topic issues such as gun control fill our news feeds, it’s easy to understand the allure of the seeming sense of security we get from reinstitutionalizing the mentally ill. However until we can realize the importance of accessible education and therapy---with the ultimate goal of developing the skills necessary for community integration--- the further isolation that the alternative provides will only serve to reinforce the very stigma that exacerbates their condition.

References:

POLLACK, H., & BAGENSTOS, S. (2015). We Don't Need "Modern Asylums". American Prospect, 26(3), 18.

Levin, A. A., Fox, N. A., Zeanah Jr., C. H., & Nelson, C. A. (2015). Social Communication Difficulties and Autism in Previously Institutionalized Children. Journal Of The American Academy Of Child & Adolescent Psychiatry, 54(2), 108-115. doi:10.1016/j.jaac.2014.11.011

Anckarsäter, H., Nilsson, T., Saury, J., Råstam, M., & Gillberg, C. (2008). 'Autism spectrum disorders in institutionalized subjects': Erratum. Nordic Journal Of Psychiatry, 62(2), 167.