URLEND MAY 2015 LAURA AMBROSE ANN DOUGLAS HOWARD FULK TERESA MOLINA Montana Systems Change.
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Transcript of URLEND MAY 2015 LAURA AMBROSE ANN DOUGLAS HOWARD FULK TERESA MOLINA Montana Systems Change.
URLEND MAY 2015
LAURA AMBROSEANN DOUGLASHOWARD FULK
TERESA MOLINA
Montana Systems Change
Introduction
Initial Project Goal: identify challenges that young adults with Autism Spectrum Disorders experience during their transition out of high school into adulthood
Initial Plan: Conduct focus groups with young adults and their parents
Initial Population of Interest: Young adults with ASD who do not qualify for Developmental Disabilities in the state of Montana
Unforeseen problem: substantial recruitment issues with our initial population of interest During course of study, revised both our population and our
study methods
Timeline
Late September 2014: Developed research planOctober/November 2014: IRB proposalNovember 10, 2014: IRB approvalNovember 2014 – January 2015: Recruitment effortsMid-January: Lack of qualified participants,
submitted new IRBJanuary 29, 2015: New IRB approvalFebruary 2015: Interviewed convenience sampleMarch 2015: Interviews transcribed and analyzed April 2015: Final paper and presentation
Method: Recruitment
● Extensive recruitment efforts● Personal communication with all programs● Informed about study, asked for recruitment advice
*Parents Let's Unite for Kids (PLUK) in Billings and Missoula (and the surrounding area)*University of Montana Disability Services*Vocational Rehabilitation*Summit Independent Living Center Inc.Big Sky High SchoolUCEDD Director, Montana, Chief, Children’s Mental Health Bureau, Montana, Director, Research and Evaluation, Rural Institute, University of Montana, Director, Reports and Data, the Office of Public Instruction, Helena MontanaMissoula Urban Indian Health Center.*Information about study went out on their list serves
Recruitment Issues
● Recruited from November 2014 to January 2015 for focus groups
● Only received interest from six peopleo Zero qualified for the study
● Convenience sample from PLUK● Switched from focus groups to interviews
Procedures
● Focus groups were not possible due to recruitment issues
● Conducted 5 individual interviewso 2 young adults with a disability
One had an ASD diagnosis One had an ADHD diagnosis
o 3 parents with a young adult child with a disability The young adults all had ASD diagnoses
Analysis Methodology
Grounded Theory Approach to Analysis:
No a priori hypothesis Ask open ended questions and let the responses lead us Invite the respondents to talk freely
Let the participants share their stories of success and challenge as they transition to adulthood
Interview Questions
Group developed questioning route with review and feedback from PLUK and Summit
1. Tell us your first name and where you went to high school. 2. What are some of your favorite things to do? F/U What about
outside your home?3. Are there things that you would like to do, but aren’t doing
right now?4. Please tell us about your living situation. F/U If you could,
are there changes you would make in your living situation? 5. Who do you spend time with or “hang out” with?
Interview Questions
6. How do you make friends and meet new people?
7. Please tell us about boyfriends or girlfriends…do you date or have you met people you would like to date?
8. How do you get yourself around town?
9. Many young adults receive help from their parent with things like meals, laundry or scheduling appointments. If your parents help you, what types of things do they do?
F/U How do you feel about this help?
10. Is there anything that you came wanting to say about your life as an adult that you didn’t get a chance to say?
Analysis Methodology
Researchers listened to the interview audio recordings and read the transcripts looking for units of meaning, similarities, differences, patterns, and commonalities
Participant Acronym and Description
MAA. Mother of Young Adult Male A with ASD 19 years old. Interviewed AA. First Case. Young Adult
Male with ASD 19 years old. Interviewed
MBA. Mother of Young Adult Male with ASD 28 years old. Interviewed BA. Second Case. Young
Adult Male with ASD 28 years old. Not interviewed
MCA. Mother of Young Adult Male with ASD 22 years old. Interviewed CA. Third Case. Young
Adult Male with ASD 22 years old. Not interviewed
D-ADHD. Fourth Case. Young Adult Female with Attention Deficit Hyperactive Disorder. Interviewed
Challenges and Services at School
Parent reports for the three young adults with ASD As children extra time in
exams, scribes, special classrooms, slow referral times, poor transition services, difficulties to complete their HS, bullied by and isolated from peers.
Only one in college, first year, already changed majors and schools at age 19 (self report confirmed)
Self report by participant with ADHD Did not have an IEP The disability was
diagnosed early in College
She says that without Voc. Rehab Services she probably would have not graduated
Living Conditions as Young Adults
Parent reports for the three young adults with ASD
AA (19) lives in the dorms. He was afraid of being bullied by HS mates now in College.
BA (28) lived two years in a residential program for people with Asperger’s Syndrome and Cognitive Disabilities, 1-2 years with mom and the last 3 years in a condo bought by one of his parents.
CA (22) lives with parents and “probably will live with them the rest of his life.”
Self report by participant with ADHD
Came to the City five years ago, lived with ex-husband, divorced and has lived on her own for three years.
Transportation Means
Parent reports for the three young adults with ASD AA uses public transportation
and knows how to drive. AA thinks not having a car is
not a big deal for him BA knows how to drive. He
chooses to walk and the battery goes dead fairly often. The person who assists him drives him around
MCA drives CA pretty much everywhere. He has taken the bus by himself “just ONCE.” “He does not go to the mall by himself.”
Self report by participant with ADHD D drives around pretty
much for all her activities. She rides a horse too.
Recreational Activities
Parent reports for the three young adults with ASD AA likes to do many
things, but he does not have time to do them (self report by AA)
BA likes “first shooting person” videogames, reading dense books and visit the Comic Bookstore.
CA likes to play videogames.
Self report by participant with ADHD D rides a horse and
likes to be with her dogs.
Friends and Meeting New People
Parent reports for the three young adults with ASD AA would like to have more
friends, but he knows he is not “cool.” Bullied in HS.
Now extremely busy with activities but not friends (AA self report)
BA only interacts with mother and an assistance person who goes 2hours/2-3 times a week. He does not know the names of the people at the Comic bookstore. Explosive behavior.
CA doesn’t know how to make new friends. Fights with 13 year younger brother as a child.
Self report by participant with ADHD D does not have time to
make new friends
Romantic Relationships
Parent reports for the three young adults with ASD AA asked a girl to the
prom. He was rejected. AA says he would like to
have more intimate friendships, but doesn’t know how (self report)
BA has not had a romantic relationship that his mother knows about.
CA has not had a romantic relationship.
Self report by participant with ADHDD has been married but did not worked. She divorced and is now in a new relationship for one year and planning to live together
Assistance in Daily Living
Parent reports for the three young adults with ASD
AA, BA and CA need daily assistance from mothers to function.
Self report by participant with ADHD
D has lived by herself 3 years, has two dogs and 1 horse.
Work/Employment
Parent reports for the three young adults with ASD AA has worked for a
political campaign doing fundraising phone calls.
BA has not ever had a job for an income
CA works 2 hours a week.
Self report by participant with ADHD D has worked as a store
manager and is beginning to work full time in a laboratory, her major is human biology.
Conclusions
Young Adults with ASD All three needed support as
children. All three continue needing a level
of assistance in daily life matters, school, employment, friendships and romantic relationships.
1 in early transition (1 year older than 18) in College.
2 (4 and 10 years older than 18) unable to support themselves, live independent lives, and hold a job.
Young Adult with ADHD
Had no symptoms in childhood that were significant to require diagnosis.
Found useful assistance when the disability happened in College.
Able to live independently.
Comments?
Questions?