Imagine meeting with a client and writing down only their limitations and dislikes. Now, return to your office and base your design on that criterion alone. How can any architect create an inspiring and meaningful design out of that? Yet, this is how many architects design for people with Autism Spectrum Disorders (ASD). The focus is on what individuals with autism cannot do rather than what they can. Such a negative approach seems misguided and unnecessary. Architects should make people more able not less disabled. It is a subtle distinction, but an important one.
At Bittersweet Farms, a residential and vocational facility for adults with autism, each staff member is required to know the likes, abilities, dislikes, and disabilities of each person with whom they work. The emphasis, however, is on the likes and abilities. Each support plan lists an individual’s likes before his or her dislikes, and staff are asked to learn them in that order. This emphasis guards against an apparent tendency to focus on what people with disabilities cannot do rather than what they can. Perhaps this tendency arises out of honest intentions to avoid all possible harm, but Bittersweet sees it as counterproductive.
For example, one individual at Bittersweet becomes irritated when he is over prompted to do something. So what? This doesn’t help staff members get him ready for bed or motivated to go to work in the morning. For that they need to know what he likes and how he is best supported. This particular individual loves singing musicals, roller blading, hiking, and doing art. Instead of being in constant fear of prompting him, staff members can say, “Do you want to sing a musical number and then get ready for bed,” or “Would you like to roller blade before or after we do the laundry?” If he ever does get frustrated staff members know how to redirect him toward things he enjoys. If staff members only know what he doesn’t like then they will be left scrambling for helpful solutions when he eventually, as we all do, becomes upset. Perhaps architects could learn something from this empowering approach.
Contrast Bittersweet Farm’s approach with Westlake Reed Leskosky’s design criteria for the Debra Ann November Wing of the Lerner School for Autism at Cleveland Clinic Children’s Hospital Center for Autism:
These are all legitimate concerns that should not be ignored. The autism community benefits greatly from Westlake Reed Leskosky’s thoughtful approach, and a critique of the criteria should not take away from their efforts. However, only two positive assertions can possibly be teased out of these criteria: spaces for one-on-one student-teacher activities, and allowing children to make autonomous choices. The first is a programming issue that can hardly be considered a positive. The second is only a caveat to a negative. The rest revolve around control and prevention—a worst-case scenario approach. This is not dissimilar from the criteria of other sensory sensitive and ‘neuro-typical’ designs. (The worst-case for the former is overstimulation while the latter is poor generalize skills.)
Trying to protect against every single possible risk is not an effective way to go about designing any environment. Bad things happen, even with the strongest preventive measures. What’s more, bad things can result from our best efforts to prevent them. Architects need to research both what limits and enables individuals with autism. For example, some individuals with autism appear to be great visual learners. Many educational programs for autism use a mixture of visual aids such as picture schedules, picture exchange communication books (PECs), sign language, and visual stories displaying tasks such as using the bathroom. Architects could aid this ability by using visual design strategies that give pertinent information about a building’s organization and function. Perhaps these visual cues could help individuals transition from one area or task throughout their day. How exactly this can be done is debatable, and needs to be more thoroughly researched (for debate on autism design see here, here, and here). What matters here is the mindset. Under a positive approach the architect’s primary role is to make individuals more able not less disabled.
Rather than limiting visual distractions the focus turns to enhancing the visual experience. What visual supports can individuals use to reorient themselves when they become disoriented? Likewise, minimizing perceived flickering from light sources might be necessary, but what about the lighting design can help individuals anticipate the progression of their day? Rather than decreasing visual stimulation it might be the case, in some instances, that architects should increase visual stimulation, depending on the type and context. By only asking what distracts or over stimulates individuals, architects will miss opportunities to empower and inspire individuals.
More importantly, an enabling design approach is not dependent on abilities specific to autism. For many, autism can be an extremely challenging experience. The most severe manifestations of autism can result in abnormal brain development significant enough to make the most understanding environment exceedingly challenging. Some individuals may have extreme learning difficulties, no clear verbal communication, self-injurious behaviors and other complicating conditions. Yet, every person has value and abilities that can be encouraged and appreciated. Architects do not need to take a negative design approach.
Natural lighting, for example, can be extremely beneficial regardless of a person’s autism. Architects can either focus solely on the possible negative effects of natural lighting, or they can celebrate the positive ones while acknowledging the negative ones. In the former architects try to suppress daylight while in the latter they try to sculpt it (see note for why this might matter). It is the difference between the Bittersweet staff knowing only what bothers an individual and knowing what motivates him.
Admittedly, the idea of making individuals more able is not readily translated into design checklists; it is more a state of mind. I don’t know exactly how this subtle distinction will shape future autism designs, but I imagine them being far more inspiring and motivating than ones predicated on a worst-case scenario. Individuals with autism deserve a positive design approach not because of their autism, but because that is how everyone should be treated.
If you enjoyed this article check out more by Christopher N. Henry here.
Christopher Henry has been researching, writing, and consulting on autism design since 2005. He has conducted post-occupancy evaluations of autism schools, homes and clinics in Denmark, England, and the US. Christopher also spent 9-months working direct-care at Bittersweet Farms, a residential and vocational facility for adults with autism. He currently runs Autism Design Consultants, where you can find more information about autism design.
Just to be clear the person, Aaron Fotheringham, in the video does not have autism. It challenges the idea that someone like Aaron is disabled because he uses a wheelchair. It is not meant to downplay the difficulties people like Aaron face, but to compel people to see the whole person not just the wheelchair. Might not be the perfect demonstration, but I still found it inspirational.
I would like to extend a special thanks to the staff and participants at Bittersweet Farms that helped inspire this article.
Another huge emphasis is on choice. Rather than saying, “After doing laundry we can go roller blading,” the individual is given a choice of when they would like to do it. Again, a subtle distinction but an important one.
Libassi, Philip. “Formulating a plan: Developing the Debra November Wing of the Lerner School for Autism at Cleveland Clinic Children’s Hospital Center for Autism,” Healthcare Design. Vol. 9 No. 7 July 2009 p. 47-55.
Think of the mass screening of infants for neuroblastoma at six months of age. It caused a great deal of harm without any apparent reduction in death rates. See: Evan, Imogen, Hazel Thorton, Iain Chalmers, Paul Glaziou and Ben Goldacre. Testing Treatments: Better Research for Better Healthcare. Kindle Location 828-859.
Amitta Shah’s and Uta Frith’s research into the human mind established back in 1983 that people with autism possess an innate acuity for detail. They challenged twenty autistic children, twenty neuro-typical children, and twenty children with learning disabilities to an Embedded Figure Task. The object of such a task is to correctly identify a previously displayed shape, like a skewed rectangle, embedded in a picture of an object like a baby carriage. The children with autism did remarkably well in comparison to the other children, and they even almost outperformed the experimenters. They averaged 21 correct answers out of 25 compared to the meager 15 out 25 for both other groups of children.
For anecdotal inspiration see:
Grandin, Temple. ‘My experiences with visual thinking, sensory problems and communication difficulties.’ Centre for the study of Autism. www.autism.org/temple/visual.html
Grandin, Temple. Emergence. New York: Warner Books, 2005.
Baghdadli, A., Pascal, C., Grisi, S., & Aussilloux, C. “Risk factors for self-injurious behaviors among 222 young children with autistic disorders.” Journal of Intellectual Disability Research, 47, 2003, 622-627.
Epilepsy can also an issue for some individuals with autism see: Hara, Hitoshi. “Autism and epilepsy: A retrospective follow-up study,” Brain & Development. Volume 29, No. 8 2007, p. 486-490.
For a great overview of autism see: Frith, Uta, Autism: Explaining the Enigma 2nd edition, Oxford, (Blackwell) 2003.
Professor Mark Rea from Rensselaer Polytechnic Institute’s Lighting Research Center found morning daylight exposure to be the primary stimulus for regulating the circadian rhythms of day-shift healthcare staff at a neonatal intensive care unit. Adequate exposure led to improved daytime alertness, cognitive performance, and nighttime sleep quality. See: Rea, Mark. “Lighting for Caregivers in the Neonatal Intensive Care Unit.” Clinical Perinatology 31:229-242. 2004.
Several studies suggest that individuals with autism may need more exposure to these changing light cycles not less. The studies’ authors hypothesize that the commonly reported abnormal sleeping patterns among individuals with autism result from disrupted sleep/wake cycles. Using parents reports and an actigraphy—a device that measures an individual’s motor activity while asleep—one study found that the sleep quality of all 69 children with an ASD diagnosis seemed to be compromised when compared to typical sleep values.
See: Richdale, Amanda L. and Margot R. Prior. “The sleep/wake rhythm in children with autism,” European Child & Adolescent Psychiatry. Springer Berlin V. 4 N. 3 July 1995 175-186. Hare Dougal Julian, Steven Jones, Kate Evershed. “A comparative study of circadian rhythm functioning and sleep in people with Asperger syndrome,” Autism V. 10 No. 6 p. 565-575 2006. Wiggs, Wiggs, Gregory Stores. “Sleep patterns and sleep disorders in children with autistic spectrum disorders: insights using parent report and actigraphy.” Developmental Medicine & Child Neurology. V. 46 Issue 6 p. 372-380 2004.
Still, other studies suggest that the sleep patterns are no different than those found in typical developing children. Two studies in particular suggest that the reported sleep abnormalities can be explained by parental over-sensitivities to the sleep disturbances of their autistic children. When measured objectively the researchers could not find significant differences in the sleep patterns of children with autism when compared to children with General Mental Retardation and children without a developmental diagnosis. However, the parents of children with autism reported sleep abnormalities more often than those parents of the control group. Thus it was the parents’ perception of their child’s sleeping difficulties and quality that was the cause for concern in both studies. Another study also concluded that the difficulties with falling asleep were not a result of autism, but could be explained by earlier bedtimes for those with autism when compared with the bedtimes of the control group.
See: Hering, Eli, Rachel Epstein, Sarit Elroy, Daisy R. Iancu and Nathanel Zelnik. “Sleeping Patterns in Autistic Children.” Journal of Autism and Developmental Disorders. V. 29 No. 2 p. 143-147 1999. Allik, Hiie, Jan-Olov Larsson and Hans Smedje. “Sleep Patterns of School-Age Children with Asperger Syndrome or High-functioning Autism.” Journal of Autism and Developmental Disorders. V. 36 No. 5 July 2006 p. 585-595.
With these conflicting studies architects cannot claim they can improve autistic symptoms by reinforcing circadian rhythms. Nonetheless, based on all other research, if architects create static environments blocking access to the changing light cycles and disrupting an individual’s circadian rhythm then architects could, unknowingly, be inducing sleep problems that might not exist in the first place. Additionally, we should not forget that such environments will also negatively influence staff performance. (Note, these concerns regarding natural lighting do not necessarily pertain to the Lerner School. I am unaware of the natural light levels at the Lerner School. They do, however, pertain to other autism design that take a worst-case scenario approach.) For more debate on lighting issues see Henry, Christopher N. “Designing For Autism: Lighting” Archdaily.com October 19, 2011.