Barriers to Receipt of Services for Young Adults With Autism

 Barriers to Receipt of Services for Young Adults With Autism

Abstract:

OBJECTIVES: In this study, we examine experiences of families of young adults (YAs) on the
autism spectrum to better understand dynamics leading to poor YA outcomes.
METHODS: Twenty parents of YAs with autism spectrum disorder (ASD) who had completed
high school in the past 15 years took part in a 90-minute interview. They described their
YA’s experiences at the transition from high school and current status with regards to
services or postsecondary education. Qualitative interviews were digitally recorded,
transcribed, and analyzed by using the constant comparative method associated with a
grounded theory approach.
RESULTS: Few adults with ASD were receiving autism-specific assistance no matter their level
of cognitive functioning. Existing systems, such as service agencies and college disability
support offices, had seldom been designed to meet their needs. Some families gave up on
services, some used self-directed services they had to manage themselves, and others paid
out of pocket for services they could access no other way. Inadequate services often led
to YA failure and worsening of symptoms. The majority of families bore the financial and
emotional brunt of finding or creating services and community experiences to meet their
adult child’s needs.
CONCLUSIONS: Parent narratives highlight the difficulties that are faced as families attempt
to access appropriate services for YAs on the autism spectrum at all levels of functioning.
These insights can help pediatricians understand family concerns and develop anticipatory
guidance strategies. More research is needed to identify potential solutions to challenges
faced by specific subgroups of YAs with ASD.

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The Heritability of Autism Spectrum Disorder

The Heritability of Autism Spectrum Disorder

Studies have found that autism spectrum disorder (ASD) aggregates in families, and twin studies estimate the proportion of the phenotype variance due to genetic factors (heritability) to be about 90%.1
In a previous study,2 ASD heritability was estimated to be 0.50, and shared familial environmental influences to be 0.04. To define presence or absence of ASD, the study used a data set created to take into account time-to-event effects in the data, which may have reduced the heritability estimates
(detailed explanation in Figure). Using the same underlying data as in the previous study,2
we used an alternate method (used by previous studies in the field) to define concordant and discordant sibling pairs to calculate the heritability of ASD

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An Evaluation of Explicit Ethical Statements in Telehealth Research With Individuals With Autism Spectrum Disorder

 An Evaluation of Explicit Ethical Statements in Telehealth Research
With Individuals With Autism Spectrum Disorder

Principles and procedures derived from the science of behavior analysis have been
utilized to improve the quality of life for individuals across many domains (e.g., health
and education) and within many settings (e.g., business and home). Recently, greater
attention has been paid to behavior analytic treatments for individuals with autism
spectrum disorder, where it is considered to be the most effective treatment (e.g.,
Reichow, 2012). Similar to other health professions, the supply of competent practitioners is less than the demand in many geographical locations. A potential solution to
this dilemma is the delivery of behavior analytic services via telehealth. A previous
review of telehealth services for individuals with autism spectrum disorder indicated
that research for this type of service delivery model is limited (Boisvert, Lang,
Andrianopoulos, & Boscardin, 2010). An additional limitation of the research to date
is an absence of behavior-analytic specific ethical considerations when practitioners
utilize a telehealth service delivery model. The purpose of this paper is to review
whether special risk reduction strategies related to the use of telehealth with autism
spectrum disorder have been documented or reported in the literature. Results suggest
that explicit step-by-step documentation of practices is sparse.

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