Date of Award

2015

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Crystal Hill-Chapman

Abstract

Purpose: This study aimed to evaluate perspectives of young adults with Asperger syndrome (AS) and High Functioning Autism (HFA) regarding supports and services, future goals, and confidence in their success. The goal of this study was to identify valuable supports and areas in which this support was lacking. Identifying areas of support for young adults with AS/HFA transitioning into adulthood aids in providing consistent services for successful goal achievement. The study has value among genetic counselors as the discovery of genetic etiologies of autism has led to referral of families with ASD to the genetics clinic. Methods: Young adults with AS/HFA were invited to participate through an online questionnaire or telephone or in-person interview. Invitation letters were sent via email to local and national support groups and colleges in South Carolina, as well as on social media sites. The online questionnaire and interviews included questions regarding receiving a diagnosis, education, supports and services, future goals, feelings regarding the DSM-5, and demographics. Results: Of the total respondents, (N=12), eight met the inclusion criteria, four completed the online questionnaire, two completed a telephone interview, and two completed an in-person interview. Participants felt their diagnoses provided a source of identity and explanation for their differences, which were not always viewed as positive. A family member, teacher, or peer who understood the diagnosis or shared a likeness with the participant was identified as the greatest source of support. Current services were minimal, and participants lacked confidence in achieving future goals and felt they could benefit from help in social skills or goal planning. Participants with AS did not favor the new DSM-5 change because of their identification with the diagnosis. None of the participants reported meeting with a genetic counselor. Conclusions: Young adults with AS/HFA are lacking in support during their transition to adulthood and pursuit of their future goals, particularly in the area of social communication. The findings of this study allow genetic counselors to be better prepared in identifying these areas of need and directing families to the appropriate resources when they present in the genetics clinic.

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