Living and working well with people with autism and developmental disabilities

Aim of blog

Scientific American recently published two articles concerning the wellbeing of people with autism in the workplace. In this blog I would like to reflect on those articles considering the history of society’s care for people with developmental disabilities including those with autism. Doing so will help workspace designers avoid past mistakes that led to segregation of people with developmental disabilities by designing integrated workspaces where all employees do their best work together.

Designing workspaces for people with autism

Two opinion articles recently published in Scientific American discuss designing workspaces for people with autism [1, 2].  Citing sources from England, Australia, Sweden, Paris, Cairo and the US, the author describes inclusive design as a process of accommodating the needs of neurodiverse communities.

“I think the most important thing is involvement – meaningful involvement – of the people who are affected. It’s just part of the disabilities rights movement more broadly…that they’re going to demand, and we all should demand, a meaningful participation in the process.” [2]

As the author points out the meaningful participation of individuals with disabilities in the process of accommodation is important for workspace designers and social scientists to understand and this understanding can be enriched by studying the history of employment of people with developmental disabilities and their rights.

The Bill of Rights for people with developmental disabilities

A developmental disability is brought about by a difference in the neurological development of an individual.  Those diagnosed as having cerebral palsy, Down syndrome, fetal alcohol syndrome, attention deficit hyperactivity disorder (ADHD) and the autism spectrum disorder comprise the developmental disability community.

In 1975, Congress passed the Developmentally Disabled Assistance and Bill of Rights Act [3] that resulted in large scale social systems change. The legislation had dramatic social impacts. Prior to the Bill of Rights Act, people with developmental disabilities were subject to the policies and practices of the eugenics movement with a purpose to control the reproduction of the socially “unfit”. Once a person was identified as being “ feebleminded” they were placed in state hospitals, involuntarily sterilized, and subject to unimaginable abuse and neglect. In 1965, Robert Kennedy, accompanied by a film crew described the conditions at Willowbrook State School in the state of New York.

” I think that at the state institution for the mentally retarded, and I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because [of] lack of attention, lack of imagination, lack of adequate manpower.

There is very little future for these children, for those who are in these institutions. Both need a tremendous overhauling. I’m not saying that those who are the attendants there, or who run the institutions, are at fault—I think all of us are at fault and I think it’s just long overdue that something be done about it. ” [4]

Five years before Kennedy’s visit to Willowbrook, Morton Birnbaum, a lawyer and psychiatrist, argued that people held in public institutions without their consent had a right to treatment, otherwise, their right to life, liberty and the pursuit of happiness were being violated [5]. Eugenics was not based on scientific evidence. Intelligence was thought to be distributed around an arithmetic mean and those with IQ’s deviating from the mean were diagnosed as being mentally retarded and incapable of learning. This justification was used to fund the institutionalization of people with developmental disabilities. 

Murray Sidman was a behavioral psychologist who as a scientist-practitioner began teaching people with developmental disabilities inside state institutions and generated evidence that regardless of their IQ, people with developmental disabilities could indeed learn [6, 7].

With Birnbaum’s right to treatment and Sidman’s evidence that people with intellectual disabilities could learn, Federal Judge Frank Johnson, ruled on the right to treatment for people with developmental disabilities and established their Bill of Rights Act [8, 9].

The liberation movement of people with developmental disabilities

My career began as a scientist-practitioner at the same time the 1975 Bill of Rights Act passed Congress. Following the Bill of Rights Act, we implemented what at first seems to be a linear approach to ending institutionalization and creating new community services to serve children and adults with developmental disabilities.

1. Evaluate the individual’s development. This resulted in our understanding of where the person with disabilities was and became our baseline measure that all future measures were compared to as evidence of the persons growth.
2. Write an Individual Plan, describing individual goals leading to their living well in schools as well as employment and residential service programs. The plan resulted in our understanding of where the person was and wanted to be in the future.
3. Obtain approval for the Individual Plan from the person with developmental disabilities, their advocate(s) and a publicly funded case manager.
4. Measure the effectiveness of our teaching and training strategies as evidence of positive social change.

While this appears linear the last step created a circular process of continuous growth, development and wellbeing with evaluation being a continuous quality measure of service efficacy..

Advocating for their own workplace wellbeing

The 1975 Bill of Rights Act required that people with developmental disabilities, including autism, be seen as people first, as individuals not as categories. A slogan during the early days of the liberation movement from people with developmental disabilities made this clear.

We are people first. Label jars not people.

The Bill of Rights Act went much further. It required all states to have a system of protection and advocacy for the rights of people with developmental disabilities independent of any state agency or service organization. This evolved into a self-advocacy movement. Such as Oregon’s Self Advocacy Coalition and the Autistic Self Advocacy Network. These self-advocates have articulated employment goals that should guide workplace design.

The Oregon Self Advocacy Coalition believes that all people with intellectual and developmental disabilities should have living wage jobs in their communities.

Therefore, the Oregon Self Advocacy Coalition calls for:

• All youth with intellectual and Developmental Disabilities must have a job, internship/training, or post secondary education in place by the time they leave high school. Youth have access to resume training, think college, and job experience.
• People with disabilities need to be paid a living wage (no more sub minimum wage).
• Everyone has the right to integrated employment in the community. People who do not want to work in segregated employment settings should get support to find integrated community jobs.
• All people with I/DD get support to find and keep jobs in the community.
• Job coaches must have training about how to work respectfully with people with I/DD and to understand their perspectives on employment. [10]

And from the Autistic Self Advocacy Network:

Integrated employment means that disabled people work in the same place as people without disabilities. Disabled workers do the same kind of work as the non-disabled workers. 

Supported employment gives disabled workers support at our jobs. Supports help disabled people succeed at work. 

Supported employment helps disabled people get jobs in our communities. 

Employment First is an idea about how to help people with disabilities get good jobs. 

Employment First means a state should help everyone who wants to work, find real work for real pay. 

1. Disabled people should be able to work if we want to. 
   1. Disabled people should be able to work in our communities. We should be able to work in the same place as non-disabled people. 
   1. Disabled people should be able to get the supports we need to work. We should be able to get the supports we need if we need a lot of support, or if we only need a little. 
   1. Disabled people should get the same wage that non-disabled people do. 

Designing workspaces for people with autism revisited

Going back to the Scientific American articles on designing workspaces for people with autism, the history of the liberation movement for people with developmental disabilities, including autism, offers guidance for designers. 

First, designing workspace cannot be categorical. Designing a single solution for “autistic people” will reverse the progress made since the Developmentally Disabled Assistance and Bill of Rights Act passed Congress in 1975. Instead, people with developmental disabilities need individualized employment support plans that specify the support and accommodation they need to be successful employees.

Second, workspace designers should complement and not replace existing programs that have successfully integrated employees with developmental disabilities such as the supported employment described by the Autistic Self Advocacy Network. Supported employment professionals have experience in job analysis, precision training, facilitated communication and enhancing naturally existing social support networks that improve individual and group productivity [11, 12].

Lastly, workspace designers should focus their efforts on designs that support all employees doing their best work and working well together. Physical space design, while fundamentally important, can not be successful unless it includes best practices for creating a culture of high performance and social wellbeing. This might appear to be daunting to the designer, but once they begin collaborating with advocates such as the Oregon Self-Advocacy Coalition, the Autistic Self Advocacy Network, and supported employment professionals designers, will discover an effective resource available in their community that compliments and enhances their design strategies.

Social impact

The University of Michigan defines social impact as a “A significant, positive change that addresses a pressing social challenge” [13]. Perhaps the best example of such social impact is the large-scale social systems change initiated by the Developmentally Disabled Assistance and Bill of Rights Act that created systems change through inductive science bringing forth new discoveries of how people live and work well together. The Bill of Rights Act presents an evidence based social change process that replaces deductive reasoning with a bottoms up inductive discovery of our human nature to live and work well together. This is what happened as society changed from institutionalizing people for their differences to creating community services focused not only on human development but society’s development of the rights of human life, liberty, and pursuit of happiness.

References

1.         Musser, G., Fixing the Hated Open-Design Office. Scientific American, 2023. 328(36-41).

2.         Harper, K. and G. Musser, Open Offices Aren’t Working, so How Do We Design an Office That Does?Scientific American, 2023.

3.         Developmentally Disabled Assistance and Bill of Rights Act. 1975.

4.         Kennedy, R. Part One  The Reawakening 1950 – 1980 1950 – 1970 Improve the Institutions. Parallels In Time: A History of Developmental Disabilities 1965  October 16, 2016]; Available from: http://mn.gov/mnddc/parallels/five/5b/4.html.

5.         Birnbaum, M.M., The right to treatment. American Bar Association Journal, 1960. 46.

6.         Mackay H.A and M. Sidman, Instructing the mentally retarded in an institutional environment, ed. J. G.A. 1968, Springfield, IL: Charles C Thomas.

7.         Sidman, M., Notes from the Beginning of Time. The Behavior Analyst, 2002. 25(1): p. 3-13.

8.         Johnson, F., Ricky WYATT, by and through his Aunt and legal guardian Mrs. W. C. Rawlins, Jr., et al., Plaintiffs,v Dr. Stonewall B. STICKNEY, as Commissioner of Mental Health and the State of Alabama Mental Health Officer, et al., Defendants., U.S.D.C.f.t.M.D.o. Alabama, Editor. 1971, U.S. District Court for the Middle District of Alabama: Alabama.

9.         Johnson, F., 344 F. Supp. 387 (1972) Ricky WYATT, by and through his aunt and legal guardian, Mrs. W. C. Rawlins, Jr., et al., for themselves jointly and severally and for all others similarly situated, Plaintiffs,v.Dr. Stonewall B. STICKNEY, as Commissioner of Mental Health and the State of Alabama Mental Health Officer, et al., Defendants, United States of America et al., Amici Curiae., in 344 F. Supp. 387 (M.D. Ala. 1972), U.S.D.C.f.t.M.D.o. Alabama, Editor. 1972, U.S. District Court for the Middle District of Alabama: Montgomery, Alabama.

10.       Oregon Self Advocacy Coaltion, Employment Committee. 2023  [cited 2023 May 24, 2023].

11.       Rhodes, L. and D. Sandow, NEC America Plant: Employees with disabilities value added analysis. 1990, Specialized Training Program.

12.       Yan, X., Grouping patterns in a supported employment work setting: Clique analysis of interpersonal interactions, in Integration at work: Multiple methodologies in research, D. Sandow and D. Olson, Editors. 1991, Specialized Training Program: Eugene, OR. p. 45-64.

13.       Center for Social Impact. What is social impact? 2017, Center for Social Impact: University of Michigan.