As a provider of services to adults with special needs we are serving an increasing number of clients on the Spectrum. This is due to three factors: (1) a higher rate of spectrum diagnosis in young adults; (2) a lower rate of traditional Mental Retardation and Developmental Disabilities (MR/DD) diagnosis and (3) a growing recognition that older adults, previously diagnosed with MR/DD, should be rediagnosed with spectrum disorders.
We anticipate this trend to continue and be seen nationally. A study conducted in Minnesota of diagnostic data for 2001-2002 as compared with 1981-1982 concluded that “federal and state administrative changes in policy and law favoring better identification and reporting of autism are likely contributing factors to the prevalence increases and may imply that autism spectrum disorder has been under diagnosed in the past” (Gurney JG; 2003). A similar conclusion may be drawn from data collected by the State of California showing the number of people diagnosed with autism decreases dramatically after 18 years of age.
Behavioral data and observations, concurrent with the increasing psychiatrist familiarity with spectrum diagnosis indicates we will have an increasing proportion of clients diagnosed with spectrum disorders.
This increased percentage of clients with spectrum disorders will impact the role of behavioral services in adult resident and day care. Like other neurodevelopmental disabilities, spectrum disorders are generally not “curable,” and chronic management is required. Like their younger, diagnosed counterparts, many of our adult clients share the three defining characteristics of autism: impaired communication ability, impaired social interaction, and restricted and/or repetitive interests and activities.
They also share in exhibiting unwanted behaviors. In adult services, it is the job of behavior services to identify and resolve unwanted behaviors. This job evolved over decades of serving the MR/DD population. In that population, and before the current era of brain imaging, a myriad of behaviors seemed to stem from an almost innumerable number of mental and physical insults to the brain. Consequently, the same behaviors could result from a wide variety of triggers, and people with the same broad diagnosis might exhibit wholly different behaviors. As a result the role of the behavior specialists has evolved to “treat the behavior not the diagnosis.”
As the proportion of adult clients shifts from MR/DD to spectrum disorders, a great opportunity exists to reassess the role of behavior services. In a traditional MD/DD adult environment, by definition, behavioral services is reactive; behavior specialists have to wait for a behavior to be reported, conduct a functional analysis and determine how to decrease that behavior or replace it with another behavior. They then write a behavior plan which is used to train and guide care staff.
With the realization that an increasing number of clients are on the spectrum, sharing a common diagnosis and common needs, adult services has an opportunity to shift from being reactive to becoming proactive. The opportunity exists for care staff to reduce behaviors, before they start, by constructing and maintaining a more prophylactic environment.
To do this we have to identify common client needs and means by which we can build a more prophylactic environment. For example, the majority of spectrum adults lead a very insular and dependent life (Howlin, 2004). They appear to lead this life to avoid anxiety and fear. Dr. Leo Kanner’s original report on autism recognized a high degree of anxious behavior exhibited in his initial sample of children. In 1998, Dr. Peter Muris restudied anxiety symptoms in 44 adolescents with autism spectrum disorders and found 84.1% met the criteria for having at least one anxiety disorder.
The importance of these observations, which can be witnessed in most adult day and residential services, cannot be over stated. Any new approach to proactive behavior management of adults on the spectrum must recognize that most unwanted behavior problems (and many co-morbid illnesses) are driven by stress resulting from chronic anxiety.
Living in a perpetually anxious state means continuously living on the borderline of fight or flight generated behaviors. Chronic anxiety also means living in a bath of hormones that reduce brain plasticity, neurogenesis and immunity. Chronic anxiety explains why aging individuals with autism frequently exhibit a reduced variety but greater frequency of repetitive behaviors. As our brain ages, “neurons that fire together, wire together.” As a result, repetitive behaviors, which originally provided a purpose (e.g. sensory stimulation), with age become an automatic, procedural memory-based behavior to any stressful situation.
Frequently observing this ingrained behavior pattern leads to staff often discounting that behavior saying things like, “Oh that’s just Randy being Randy.” Their belief that the behavior is inevitable blunts efforts to address or attempt to alter the behavior. Research on repetitive behaviors offers little help. Conflicting theories suggest these behaviors occur because they may:
- Be built & retained, unconsciously, through procedural memory to reduce anxiety (Legendre, 1992)
- Be chosen consciously because, over time, they are seen as the sole alternative to any other behavior (Charlop, M, 1990)
- Result from mental impairment; individuals with autism are often unable to contemplate or communicate about their own mental states (Baron-Cohen, S. 1989)
- Result from mental impairment; they can’t be inhibited due to executive dysfunction and disinhibition (Turner, MA, 1997)
This has led us to consider moving upstream in the unwanted behavior chain, from the consideration of the behavior itself to its frequent precursor: chronic stress. It has been shown that chronic stress, over time, can cause limbic neural circuitry to transition from normal vigilance responses to pathological anxiety (Anantha Shekhar, 2005).
As people on the spectrum age, the neuroanatomical differences seen in young individuals with autism persist (Armin Raznahan 2010). However, chronic anxiety appears to decrease the threshold level of behaviors and reduces the range of responses available, thus automatically locking the client into ever more frequent & automated responses. And as Dr. Ole Ivar Lovaas suggested in 1977 and Dr. Frank Cicero confirmed (F.R. Cicero, 2007), these “locked in” behaviors may become difficult to extinguish as, in time, they become their own reinforcement.
This has led our behavior services department to formulate a strategy to first focus on reducing chronic stress, by building a more prophylactic environment. Over time this will eliminate many unwanted behaviors. Remaining behaviors will be treated traditionally using functional analysis and Applied Behavior Analysis. This strategy requires 4 major changes:
1) Care staff has to be educated in environment management for clients on the spectrum and the continuous use of positive reinforcement.
2) Off-the-shelf technology has to be enlisted to offset the cost of direct supervision, reduce client dependence, and improve client communication.
3) Reduce the dependence of psychiatrists and spectrum clients on psychotropic medication coincident with steps 1 and 2.
4) Constantly review clinical journals to identify potential application of new childhood spectrum research to adults – e.g. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), PKU (Phenylketonuria) disease, gastrointestinal disorders, etc.
Educating Care Staff
Of the four changes above, it is anticipated that training staff on how to better manage their environment will yield the biggest short-term payoff. Both in day care and group homes, most people on the spectrum have fixed schedules. Some picture or sign communication and “escape activities” are often used when stress warning signs first appear. In day programs the current emphasis is on improving socialization which requires all clients to participate in changing peer groups and work areas. We anticipate, after more intense training on spectrum disorders and positive reinforcement techniques, that we might shift primary emphasis from improving socialization to improving communication skills for those clients on the spectrum. Communications problems have been long viewed as a source of chronic stress (Schopler & Mesibov, 1985), a means of nonverbal means of communication (E. G. Carr and V. M. Durand, 1985), and a point of leverage for development of joint attention and functional skill development. Shifting emphasis would ultimately decrease spectrum client stress due to less frequent environmental change and improved communication. These changes would be facilitated by use of off-the-shelf technology. We envision employing a similar strategy in group homes. We hope to use new tools like video messaging for schedule reminders and notices of change. We also hope to exploit room video and software to increase opportunities for learning – e.g. expanding attention span and improving functional ability and social and communications skills.
Exploiting Off-the-Shelf Technology
In the 1970’s Gordon Moore developed a set of curves that said, as electrical circuits became smaller, they would become more complex and useful, be in greater demand and therefore progressively cheaper. His predictions have held until today: we can purchase a personal, portable computer for under $100 and have several clients who use PDA’s (Personal Digital Assistants or talking watches) to keep on schedule. The combination of higher performance and lower costs creates a real opportunity for people on the spectrum generally and for adult services specifically. Adult services are a sector of the economy that has a growing number of clients but suffers from annual budget cuts. Using off-the-shelf technology offers the opportunity to replace unnecessary ongoing labor expenses with one time capital investments.
For example, we would not think of employing one full time staff today to monitor the door of a group home resident when the door can be monitored electronically. Electronic or electromechanical devices are reliable, patient and vigilant. When programmed appropriately they can provide clients on the spectrum with stress reducing information and individually tailored learning opportunities. We anticipate increasing use of small, portable electronic devices to reinforce schedules and provide stepped instruction to reduce client stress due to uncertainty. We anticipate increasing use of audio and video messages blended in with our client’s regular media diet to assist in developing improved decision making, prompting and stepped learning of functional activities.
Reduce the Use of Medications
A 2003 study found over half of autism spectrum patients were prescribed psychotropic (antidepressants, neuroleptics, anxiolytics, and mood stabilizers) drugs (Michael G. Aman, 2003). A second study tracked autistic spectrum drug use over time. It found that drug use increased with age and elapsed time (Anna J. Ebenson, 2009). Because of this pervasive drug use, John W. Harrington postulated in 2008, “We have relegated intensive persistent behavioral strategies to the background for parents who may not have the time or the skills to manage these difficult children.” In adult services where psychiatric appointments are often only 15 minutes long, and the prospect of getting all prescribing clinicians (e.g. neurologist, general practitioner, psychiatrist, etc.) to agree on a comprehensive patient drug regimen impossible, drugs trump behavioral interventions. Unfortunately most psychotropic drugs are prescribed for their side effects (many drugs were originally developed for another purpose) and thereby carry adverse reaction and side effect baggage. Recent research has shown that many psychotropics can;
- Be less effective than placeboes (Mihir S. Parikh et al; 2008, BH King, et al 2009, Lukas Propper, MD)
- Cause side effects particularly as patients age (Abhilash K. Desai, MD, 2010)
- Cause heart disease with prolonged use (Kovacs, Daniela MD, 2008, K Jolly 2009)
- Contribute to death with prolonged use (Christine Montout, 2001)
As a result of decreasing stress through training and technology, we believe we will decrease unwanted behaviors and the use of psychotropic medications.
Identifying New Treatments and Interventions for Adults
The combination of concurrent advances in neurology, biological and genetic research has provided an increasing menu of potential autism treatments and interventions. My 5-year-old nephew, who was diagnosed with autism at 18 months, has never really displayed a consistent or comprehensive set of autism symptoms. Since diagnosis he has worked weekly with occupational therapists, physical therapist and speech therapists. Up until recently we attributed his progress to their expertise. We did not know to what to attribute his almost cyclical retrogression and recurring periods of unwanted behaviors. It was by accident we were referred to PANDAS research and discovered that his behavior might be attributed largely to recurring infections. After talking to other PANDAS parents, my nephew’s parents are moving ahead with treatment.
Until my experience with PANDAS I thought I had the ability to both keep up with developments in autism and help translate those developments to my clients. Now I am less sure. Previously I viewed PANDAS as a childhood treatment for a childhood disease. But now I realize that I have several middle age clients who exhibit behavioral reactions to infections and reduced behaviors when on antibiotics. While the NIH still states that PANDAS can only be a childhood disease, a small but growing body of research indicates otherwise (Germana Moretti, 2008, G Maina). Unfortunately, since the vast majority of research on the autism spectrum is conducted on and for juveniles and not adults, we will have to build better resources and relationships to explore and advocate for adult applications or adaptations to promising research on youth.