Challenging Dogma - Spring 2008

...Using social sciences to improve the practice of public health

Sunday, April 20, 2008

Where the Sidewalk Ends…..What Happens When Young Adults with Autism Spectrum Disorder Age Out of the Highly Structured Public School System? – Jessic

The individual level focus of traditional public health theories, such as the Health Belief Model, Social Learning Theory and Social Networking Theory fail to consider the capabilities and difficulties of those with developmental disabilities, specifically people on the Autism Spectrum. Intention, social norms, and modeling often have little to do with the behaviors of those with Autism Spectrum Disorders (ASD). The lack of the traditional models’ influence is evident by the triad for ASD symptomology, which includes difficulties with social interactions, communication, and behavioral skills. ASD is grouped under the Pervasive Developmental Disorders (PDD) in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and includes Autistic Disorder, Asperger’s Disorder and Pervasive Developmental Disorder – Not Otherwise Specified (PPD-NOS).

The necessary criteria for a diagnosis of Autistic Disorder “are the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests” (APA 2000). Those with Asperger’s Disorder and PDD-NOS also exhibit marked social impairment and limited, “repetitive patterns of behavior, interests and activities,” however there are not clinically significant delays in language or cognitive development (APA 2000). The rate of mental retardation varies with the functioning level, with Autistics having the highest rate (70%) (Yale 2008). However, the overall rate for all PPDs with normal intelligence (defined as an IQ ≥ 70) ranges from 55-75% (Chakrabarti 2001). Thus for the purpose of this paper, the focus is on those with an ASD and normal intelligence.

The Centers for Disease Control and Prevention (CDC) developed the Autism and Developmental Disabilities Monitoring (ADDM) Network to discover and track the prevalence of these disorders. In 2002, the ADDM determined the national average of ASD to be 1 in 150 children (Centers for Disease Control 2008). It is interesting to note that the rates varied by regions, with Alabama reporting “3.3 per 1,000” and New Jersey with “10.6 per 1,000” (Centers for Disease Control 2008). ASD is three to six times more likely among boys than girls, and the average age of diagnosis “ranged from four years, one month to five years, six months [with] 51-91% of children with an ASD [having] developmental concerns…recorded before three years of age” (Centers for Disease Control 2008).

Manifestations of these traits are pervasive (occurring across settings) and persistent. Classic expressions of these impairments for school-age children and young adults with an ASD (and normal intelligence) are an inability to comprehend humor, read social cues, discern the needs of others, engage in reciprocal communication, exhibit self-monitoring, and/or a hypersensitivity to stimulus (e.g. sound, touch, light) (APA 2000). Positive traits may include an ability to acquire a tremendous amount of knowledge about a particular topic (e.g. sound systems), a need to follow rules and regulations and a proclivity for sincerity.

A look at the definitions of these disorders solicits an unequivocal determination that the typical pathways public health uses to predict and/or explain behavior are not applicable to this population. Even so, the policies affecting the lifespan focus on individually based interventions and show a flagrant lack of understanding of this population’s needs. By abandoning individuals with an ASD who have aged out of the public school system, public health puts the responsibility for acquiring services on the individual with an ASD and/or the family, fails to ensure that services are widely available and appropriate, and ultimately fails adults with an ASD by leaving them vulnerable to mental health disorders and developmental stagnation.

Lack of Structure for Adults
ASDs were added to the Individual’s with Disabilities Education Act (IDEA) in 1990, thus guaranteeing this population to a Free Appropriate Public Education (FAPE) (2007). By the 1999-2000 school year “the number of students with...ASD served in special education had increased dramatically,” by more than 1,100% (Yell, Katsiyannis et al. 2003; Yell, Drasgow et al. 2005). Under the IDEA, the public schools are required to incorporate transitional plans into each student’s mandated Individualized Education Program (IEP) no later than the age of 16 (2006). There are guidelines the IEP team must follow, but there are no mandates about the types of services or definitions of what is appropriate. These adolescents and young adults range from 16 to 21 years old, and the public educational system is not obligated by the IDEA to further assist with or coordinate the transition to community services after the age of majority, which varies by state (2006).

Due to the absence of mandated structure, the quality of referrals provided by the school to community services differs greatly. Additionally, resources and services vary greatly by region as evidenced by the popular Autism Speaks website. The site lists local services for 30 states, and even a quick scan state-by-state shows the disparity in available services across the country. The number of resources listed under the heading “Adult Services” ranged from five organizations in states like Tennessee and New Mexico and upwards of 50 service listings for New York and 60 for New Jersey (Autism Speaks 2008). Understandably this is not an exhaustive list, nor is it indicative of the value or quality of the services, however it is likely representative of the ease with which ASD individuals and their families are able to locate local resources.

One of the difficulties in providing adequate care is that the spectrum ranges from very low to very high functioning individuals, and thus providing services to the entire range is extremely difficult and costly. Due to a lack of available alternatives or financial limitations, the ASD population is often forced to receive services through the Arc systems. The Arc (formerly known as The Association for Retarded Citizens of the United States) was spearheaded by a group of volunteers, most of whom were parents, in 1950 to help meet the needs of their mentally retarded children. The services traditionally target this specific developmentally disabled sub-set (The Arc 2008). All Arcs are nonprofit agencies and local chapters very in size and breadth of services. Some are able to offer a wide range of residential, day-treatment and vocational services, depending on the amount of funding available. Thus, not even this nationally recognized, well-established organization can be guaranteed to have the resources to optimize the quality of life, especially for higher functioning individuals.

Parents continue to be the most effective in procuring and establishing services. The advent of the internet has enabled these motivated advocates to reach out to educate and support one another. Their call for more appropriate and adequate services is quite evident on websites trying to connect parents and those with an ASD with available community resources and blogs such as: “Autism for Parents,” and “29 Marbles: An Autism Blog.” (Autism for Parents 2008; 29 Marbles 2008). A very promising solution to the paucity of adult services can be found in grassroots programs such as Achieving in Higher Education with Autism and Developmental Disabilities (AHEADD) (AHEADD 2008) and Emory University’s Autism Center (Emory 2008). And while these programs are beginning to raise awareness and are getting ASD onto a larger agenda, the biggest advocates for more appropriate services continue to be the affected individuals and families, an already taxed system.

Individual Emphasis
Thus, after aging out of the school system, the responsibility of acquiring and maintaining services for those with an ASD lies solely with the individual and/or the family/caregiver. The ASD population, by definition has social deficits, and thus, the extent of the burden and toll falls on family/caregivers (Gal 2008). It is not surprising and is well documented that the added parental responsibilities required by caring for an individual with a developmental disability often leads to a greater and/or more prolonged exposure to stress and depressive symptoms than for mothers with normally developing children (Dyson 1997; Baker, Clacher et al. 2005). However, as reported by Mitchell and Hauser-Cram (2008) satisfaction with the health care of her adolescent with a developmental disability was linked to “lower parenting stress and fewer depressive symptoms” than for dissatisfied mothers (p. 107). One might then also conclude that satisfaction with other services such as day treatment programs, vocational training programs, etc. might work to alleviate some of the undeniable stressors affecting these caretakers.

The magnitude of stress inherent in these families may then also lead to the development of expressed emotion (EE). EE “is a measure of the affective relationship between two people characterized by criticism, hostility, and emotionally over-involved attitudes” (Hastings and Lloyd 2007). This concept was developed in looking at the recidivism of severe symptoms of schizophrenia and behavioral problems when patients returned home after stabilization in the hospital (Butzlaff and Hooley 1998). Hastings and Lloyd (2007) determine that while more research needs to be conducted on the outcomes of high EE in families with adult children with intellectual disabilities, evidence suggests that “over time…the putative causal effect of high EE [may result in] maintaining or exacerbating behavior problems” (p.339).

There are multifaceted implications that result from a lack of, or sub-par, services for this population. Those with an ASD are highly susceptible to social and behavioral problems, which can be exacerbated by an unstructured adult care system. These outcomes include, but are certainly not limited to, medical and psychiatric involvement and also social and vocational failures.

While the rate of criminal behavior remains low, several of the typical attributes of those with Asperger’s Disorder lend themselves to an explanation for criminality. According to Allen et al (2007), “sexual offences, violent offences, and arson tend to be the most offence types [studied in this population], while preoccupations,… interpersonal naiveté, low empathy, self-centredness, ‘logical’ explanations for offending and problems with sexual frustration are all described as contributory characteristics to” criminal behavior (p. 748-9). Triggering events for these offenders are situations very commonly experienced by the ASD population as a whole, and include social and/or sexual rejection, being a victim of bullying, family conflict and loss of job (Allen, Evans et al. 2008). Clearly, individuals not involved in appropriate services with adequate support systems are at higher risk for inappropriate, possibly criminal, responses to these stressors.

Eaves and Ho (2008), using a sample of 48 young adults with an ASD and an average age of 24, found that 77% suffered from “additional psychiatric problems/diagnoses” (p. 742). The most common include Obsessive-Compulsive Disorder, anxiety, depression, Tourette Syndrome and conduct disorder. The study analyzed quality of life outcomes as well, using childhood and adolescent verbal IQ, vocational status, “degree of sharing and mutual participation of” relationships, and residential independence (Eaves and Ho 2008). Using these variables, definitions ranging from very poor to very good were developed with the following results:
Very Poor 0 (0%)
Poor 22 (46%)
Fair 15 (32%)
Good 8 (17%)
Very Good 2 (4%)
Although Melville, et al. (2008) found similar prevalence rates for mental illness when comparing adults with Autism with healthy subjects of the same ages and genders, the Autistics did exhibit a greater rate of “problem behaviours” (p. 7). Examples of problem behaviors as defined by Melville (2008) include verbal, physical or destructive aggressiveness and self-injurious behavior. They also found that once exhibited, a problem behavior in the Autistic population is more likely to continue to persist. One hypothesis posed to explain this persistence is the lack of responsiveness to traditional mental health interventions and this is clearly another avenue the research must attempt to qualify (Melville, Cooper et al. 2008).

Arguably the biggest disservice resulting from the paucity or inadequacy of services is the possibility of stagnation in adult milestones, such as living independently, financial independence, vocational success, relationships, etc. (Barnhill 2007; Horner-Johnson 2007). The broad topic of Autism has certainly been added to the national agenda, evident by the amount of press coverage. However, now the research and the policies must address the adult population living with these lifelong developmental disabilities and work towards optimizing the quality of life. There is a need to conceptualize the diagnoses and the treatments so that qualitative and quantitative research can be conducted, validated and disseminated. These steps will lead to the development of appropriate and effective services that will take the focus off the individual and create optimal quality of life for the entire spectrum.

29 Marbles. An Autism Blog. Accessed March 2008:
(2006). Assistance to States for the Education of Children With Disabilities and Preschool Grants for Children With Disabilities: Final Rule, U.S. Department of Education.
(2007). Free Appropriate Public Education for Students With Disabilities: Requirements Under Section 504 of The Rehabilitation Act of 1973, U.S. Department of Education.
Allen, D., C. Evans, et al. (2008). "Offending Behaviour in Adults with Asperger Syndrome." Journal of Autism and Developmental Disorders 38(38): 748-758.
APA (2000). Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition,
Text Revision (DSM-IV-TR). Arlington, VA, American Psychiatric Association.
Autism for Parents. Blog. Accessed March 2008:
Baker, B., J. Clacher, et al. (2005). "Preschool children with and without developmental delay: behaviour problems, parents' optimism and well-being." Journal of Intellectual Disability Research 49(Pt 8): 575-90.
Barnhill, G. P. (2007). "Outcomes in Adults With Asperger Syndrome." FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES 22(2): 116-126.
Butzlaff, R. and J. Hooley (1998). "Expressed emotion and psychiatric relapse: a meta-analysis."
Archieves of General Psychiatry 55(6): 547-52.
CDC. Autism Information Center. Accessed March 2008:
Chakrabarti, Suniti and Eric Fombonne (2001). "Pervasive Developmental Disorders in preschool Children." The Journal of the American Medical Association 285:3093-3099.
Dyson, L. (1997). "Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support." American Journal of Mental Retardation 102(3): 267-79.
Eaves, L. C. and H. H. Ho (2008). "Young Adult Outcome of Autism Spectrum Disorders." Journal of Developmental Disorders 38: 739-747.
Emory. Adult Services. Accessed March 2008:
Gal, G. (2008). Autism in Adult Patients and the Effects on Caregivers. 2008:
Hastings, R. P. and T. Lloyd (2007). "Expressed Emotion in Families of Children and Adults with Intellectual Disabilities." Mental Retardation and Developmental Disabilities Research Reviews 13: 339-345.
Horner-Johnson, W. (2007). Healthy Lifestyles for People with Intellectual Disabilities. 2008:
Melville, C., S. Cooper, et al. (2008). "The Prevalence and Incidence of Mental Ill-Health in Adults with Autism and Intellectual Disabilities." Journal of Autism and Developmental Disorders February 29, 2008(Epub ahead of print).
Mitchell, D. B. and P. Hauser-Cram (2008). "The well-being of mothers of adolescents with developmental disabilities in relation to medical care utilization and satisfaction with health care." Research in Developmental Disabilities 29: 97-112.
The Arc. History. Accessed March 2008:
Yale 2008
Yell, M. L., E. Drasgow, et al. (2005). "No Child Left Behind and Students With Autism Spectrum Disorders." Focus on Autism and Other Developmental Disabilities 20(3): 130-139.
Yell, M. L., A. Katsiyannis, et al. (2003). "Developing Legally Correct and Educationally Appropriate Programs for Students with Autism Spectrum Disorders." Focus on Autism and Other Developmental Disabilities 18(3): 182-191.



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