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?