VisionAware

By Terese Pawletko, Ph.D.

Why Is It Important to Consider the Possibility that the Individual You Are Working with May Be on the Autism Spectrum?

It provides a whole different way of approaching intervention and mapping a “goodness of fit” to educational, vocational, advanced training, and/or work settings, depending on whether your client has a visual impairment or has a dual diagnosis of visual impairment and Autism Spectrum Disorder (ASD). There are different assumptions, profiles, and approaches that may be required. (Note: the detail required to illustrate the different approaches is beyond the scope of this article. It is at minimum a workshop’s worth of information to introduce the concepts and considerations to maximize a good fit.)

Having a visual impairment by itself impacts social interactions and often requires accommodations in work and learning situations. That said, we are often able to verbally explain situations and have the individual grasp the nature and demands of a situation. However, if you approach an individual with a visual impairment, where you also suspect an autism spectrum disorder, the strategies that you would typically use (e.g. verbal explanation, social reassurance) may backfire.

Why? Most of us can show the flexibility of thought and action, take the perspective of another, and take in information and act on the information provided (within reason). Individuals with ASD may have a rigid, literal interpretation or association with a particular setting, topic, or activity. As a bit of an extreme example, mealtime is for eating, not for chatting and eating simultaneously. They are trying to make a grey world (one that is constantly changing, sometimes in nanoseconds) fit into a black and white schema. They may struggle to take the perspective of another, so your rational explanation of why something should happen may fall on deaf ears—not because of a lack of interest or caring. It is just hard to shift from their own worldview without understanding where it is coming from, and a verbal explanation will likely miss the mark.

Individuals with an autism spectrum disorder may come across as “challenging authority” or “being rude” not because they are trying to be disrespectful, but because their understanding of a situation is literal, black and white, and egocentric. They only know their perspective and cannot put themselves in your shoes without some more formal preparation.

Illustration of Employment Assessment

Let me illustrate one situation where a young woman could have lost a job that she was well suited for had I not given her a diagnosis of Asperger’s Syndrome (not based on this one incident but it prompted the parent and I to consider it). This woman was a proofreader and very quick and accurate. She knew that employees were expected to work from eight to five. Betsy was there promptly at eight and left promptly at five. She tracked her coworkers and would report when they arrived and left. Betsy interpreted the eight to five literally and applied it with precision, without understanding that it was a “best estimate” knowing that some people might be a few minutes late or work from 7:30 to 4:30 and that “that is OK.” She did not understand that it was not her job to track others’ time cards and that her coworkers would come to resent her. Betsy needed to have someone work with her in order to broaden her understanding of the social contexts in which she was operating. As a result, she was able to keep her job and eventually get promoted.

Psychological Impact of Not Diagnosing Someone on the Autism Spectrum

It is important to be sensitive to the psychological impact on emotional well-being when we fail to diagnose someone who may be on the autism spectrum. This is illustrated by an adult with no light perception (not diagnosed with ASD until he was 27). He wrote:

“The Asperger’s causes me many more problems across a wide spectrum which blindness does not do and it has ever since I was a small child. The symptoms of both autism and depression have been devastating throughout. When I was growing up, my tantrums from sensory overstimulation were attributed to my being a spoiled child, and I was treated as such leaving me with a sense of inferiority and hopelessness.”

This young man speaks for those who cannot.

What Kind of Difference Can the Diagnosis Make? Robbie’s Case History

When I was on the staff at the Maryland School for the Blind, there was a young man who I’ll call Robbie. He was 17, born at 23 weeks gestation, and had low vision and a severe reading and writing disability. He also struggled with executive functioning (keeping track of things, organizing his approach, planning), was quite literal in his interpretation of situations and language, had great hearing (so much so he would overhear conversations and repeat them to others), would get angry when attending his IEP meetings and yell at his mother, etc. Robbie also came to me with about 10 diagnoses, including organic brain syndrome, attention deficit hyperactivity disorder, obsessive-compulsive disorder, generalized anxiety disorder, low tone, reading disabled, graphomotor disability, etc.

Evaluating Robbie

I evaluated him while he was a student at a residential school for the blind, and based on history and formal assessment, including a clinical interview, discussions with parents and staff, rating scales, cognitive evaluation, assessment of adaptive behavior, and observations, gave him a diagnosis of Asperger’s Syndrome.

Robbie was quite distressed at hearing the diagnosis because he thought I was going to “change him” with this new label and that the result was going to be that he would be “more impaired, more handicapped.” I told him that my goal was for him to become more independent. Furthermore, I explained that at least one-third of the diagnoses would fall under Asperger’s and some of the previous diagnoses no longer existed such as “organic brain syndrome,” which he thought was quite funny.

Prior to the diagnosis, staff treated and communicated to Robbie that he was irresponsible, inattentive, and a “tattle tale” because he shared information that he overheard. They placed him in a video store where he was expected to rewind and reshelve tapes alphabetically (despite having a significant learning disability) in a place that regularly rearranged the store, and he was expected to ignore the nonstop video screens that advertised coming attractions (remember, he has acute hearing). This was clearly not a good fit given his learning and motor challenges, distractability, and difficulties with change.

Example of What Can Happen When Employment Options Are Considered When Working with an Individual with ASD and Visual Impairment

In answer to Lynda Jones’s question in her blog post on employment and autism, “Could the clients that she had worked with have found meaningful employment that fit both their blindness and autism had the rehabilitation professionals serving them known about the relationship between blindness and autism?” Robbie provides one example of what can happen when someone understands social, communication, and sensory challenges. His behaviors (e.g., rocking, listening to others’ conversations, distractibility, planning) were related to breakdowns in understanding social rules and expectations (by setting and activity), difficulties with unstructured time as well as planning and sequencing, and having a framework to understand the basis for his challenges and what helped him function.

Looking at Robbie’s Daily Routine

Following the evaluation, in addition to asking for a different prevocational placement, Robbie and I looked at the various situations and activities that he was involved in—Goalball away meets (which involved travel to an unfamiliar destination, major changes in routine), having to keep track of multiple personal items (which was hard for him even in the residential setting); lots of unstructured time; on campus last minute changes in staffing (and the uncertainty of what that meant); having a set laundry schedule (Wednesday night), yet what if all he had was dirty clothes when he was getting ready for his off-campus job on Tuesday (which could result in a very stressful start to his day). Well, we started to “build” a toolbox of strategies.

Building a Tool Box of Strategies

1. A packing list that had four columns (what went in at the dorm, what came out at the away meet, what went back into the suitcase at the away meet, what was unpacked on his return to the dorm). He didn’t lose a thing for the first time in his life (and would come for a packing list for other trips)
2. A detailed schedule of his trip (from the time he left the dorm until his return) including “jobs” while waiting for his event (e.g., folding towels, filling water bottles)
3. Application of social behavior mapping strategy (identifying the “expected” and “unexpected” behaviors by setting and activity such as banquet, dance behaviors). For more information check Michelle Garcia Winner’s SocialThinking.com website for more information.

Importance of Social Stories

For this and other new activities and situations, I often wrote social stories that provided Robbie with tangible information regarding the nature of the activity, possible sequence of the day or activity, potential glitches, possible sensory load in that environment, suggestions for coping strategies (that he would already have under his belt), etc. This written information gave him something to refer back to (useful when “new” might be stressful) and reflect on and give him opportunities to ask questions in advance of entering that setting or activity. Sometimes these events were followed by a debriefing session so that we could tweak something for a future event. There are many benefits to these types of proactive strategies—knowing things in advance (in tangible forms) allows an individual with ASD/VI a chance to focus on the event and often rise to a higher social level rather than putting their energy into managing anxiety (which for some could lead to a behavioral event).

Importance of Written Schedule

For his campus activities, we provided a written, laminated schedule that was organized by day (providing predictability) and also gave space to write in changes (at the start of the day), so he could adjust accordingly (and in writing as a memory aid, preventing repeated questions regarding “what is next, when is there a change?”). To address the laundry day issue (and others), Robbie and I looked at where he went, what he did, and what he needed each day within those settings and activities. If he was working on Tuesday, He either needed to request that his laundry day be moved to Monday or check for a clean shirt Monday evening and if needed, do a quick load of laundry.

Robbie Finds Employment

Robbie clearly grasped the concepts and became more confident in his ability to communicate what he needed and get the necessary support. Over the next year, he got a job at Golden Corral and asked to set up his own workstation. Upon graduation, he was employed by a hotel and charged with refilling hotel rooms with soap, shampoo, etc. This was something that was predictable, quiet, had the same setup, steady, but not rushed. He went on to other jobs. It has been 17 years since his initial diagnosis. He remains employed, is in a supported living situation (sharing an apartment with several others), and attends social events. Robbie has testified in front of a state legislature in order to secure funding for group homes, is engaged in advocacy for those with developmental disabilities, and has planned trips to various countries based on his interest in history and politics.

Postscript to Robbie’s story: Fast forward to spring, 2017. I just got word that Robbie was honored with an award for his advocacy for individuals with developmental disabilities!

Isn’t It Time to Work Together?

In Lynda Jones’s post on autism and employment opportunities, she asked: “Isn’t it time for all professionals working with children and adults who have the dual disabilities of vision loss and autism to work together?” Absolutely, yet we need to identify and advocate for forums in which this can happen and communicate to other professionals that it is possible to have autism and visual impairment.

In her post, Lynda also asked, “How frequently does the teacher of visually impaired children and the rehabilitation counselor work in partnership to provide seamless services to their shared students/clients with autism and blindness?” This assumes that teachers of the visually impaired, the rehabilitation counselors, and other providers (e.g., orientation and mobility specialists) have the awareness, skill set, and know-how to access the autism-related services in their area.

A further complication is, how do we make sure that we collaborate with the autism specialists in our regions so that they help us understand the complexity and interventions required to support (educationally and vocationally) individuals with a dual diagnosis as you will currently hear, “I don’t know what to do as most of our strategies are visual.” Well, it is time to start thinking beyond those words and start applying tangible, “print” (braille, print) supports and additional structures to help our students and adult clients thrive. It is time to move forward.