Journal of Child and Family Studies

, Volume 26, Issue 5, pp 1310–1317 | Cite as

Financial Capabilities Among Youth with Autism Spectrum Disorder

  • Nancy C. Cheak-Zamora
  • Michelle Teti
  • Clark Peters
  • Anna Maurer-Batjer
Original Paper

Abstract

Youth with Autism Spectrum Disorder (ASD) experience significant difficulties assuming adult responsibilities and achieving independence. Little is known about their desire or ability to manage their own finances. This study explored the financial circumstances, money management skills, and desires for financial independence among 27 youth with ASD. Youth took part in 30–60 min semi-structured interviews about independence. Strategies of theme analysis identified three critical themes about finances and emerging adulthood for youth with ASD. Youth (1) defined independence by being able to manage their finances, (2) worried about their lack of money management skills, and (3) cited poor financial skills as barrier to independence. Results suggest youth with ASD understand the importance of financial capability and strive for financial independence, but lack the skills and support needed to achieve their financial goals. This study provides preliminary information for clinicians, educators, and researchers to develop financial capability modules for youth with ASD.

Keywords

Autism spectrum disorder Youth/young adults Independence Financial capabilities Money management Qualitative methods 

Introduction

Over three million people in the U.S. are estimated to have an Autism Spectrum Disorder (ASD) diagnosis (Autism Speaks 2012). With annual diagnosis rates surpassing juvenile diabetes, cancer, and HIV/AIDS combined, ASD is frequently described as an emerging epidemic. ASD is a complex disorder characterized by impairments in verbal and nonverbal communication and social interactions, as well as restrictive or repetitive behaviors. These impairments, plus high rates of comorbidities, result in this population having multifaceted needs, such as health care, education, and support services (Shogren and Plotner 2012).

The increased rates of diagnoses and complex needs of youth with ASD contribute to the necessity for transition services and life skills training. Although early intervention therapies have been shown to improve functioning and communication for children with ASD, more services are needed for youth, particular as they transition into adulthood and beyond. Unfortunately, services become more scarce and fragmented as children end their high school careers (Friedman et al. 2013). As high as two-thirds of youth with ASD had little or no participation in transition planning services (Cameto et al. 2004). The lack of services may help explain why youth with ASD experience low rates of education, employment, and community participation, and demonstrate poor social outcomes (Friedman et al. 2013; Shattuck et al. 2012; Shogren and Plotner 2012; Wagner et al. 2005). These findings suggest that current transition models are insufficient for meeting the needs of youth with ASD (Shattuck et al. 2012).

Transition services currently provided to youth with special health care needs (YSHCN) are inadequate partly due to the lack of curriculum on financial management and decision-making skills, even though these are integral components of a holistic transition plan for vulnerable young people. Personal finance has been identified as one of the six priority areas for people with learning disabilities in the UK (Williams et al. 2008). Research within the U.S. indicates that connecting to financial institutions as a young person aids long-term financial well-being (Friedline 2015; Friedline et al. 2016; Peters et al. 2016a). For people with disabilities, being able to manage ones’ own finances increases overall independence and improves psychological well-being and income attainment (Abbott and Marriott 2013; Hendricks and Wehman 2009; Taylor et al. 2011). Research also suggests that many individuals with mild intellectual disabilities are able to make at least some of their personal finance decisions (Suto et al. 2005a). Although little is known about the financial skills of individuals with ASD, it is likely that many, depending on cognitive functions, can make financial discussions with assistance or training.

Few studies provide information about the current practices of money management among YSHCN, particularly youth with ASD. We do know that only half of individuals with learning disabilities have control over their own money and youth with ASD are less financially independent than other YSHCN, often relying on their parents well into adulthood (Friedman et al. 2013; Hume et al. 2014). One study examined the use of specific financial tools among YSHCN and found that only one-third of these individuals have personal checking accounts and 20% have a credit card 2 years after high school (Wagner et al. 2005). For financial health of youth with ASD specifically, few youth in high school had checking accounts (10%) or credit cards (.5%), and although access to checking accounts had increased to 33%, credit card ownership was still low (2.5%) 2 years later (Wagner et al. 2005). These low rates of banking service utilization indicate a lack of financial autonomy among YSHCN.

Despite the importance of financial autonomy and increased independence it provided for YSHCN, financial management, and decision-making skills are often seen as outside the purview of human service professionals working with young people and the topic is a rarely discussed component of transition planning for all people with disability (Peters et al. 2016b). According to the (Council for Economic Education 2016), only 17 states require students to complete a personal finance class in high school. Educational supports, such as a financial literacy curriculum in both schools and independent living programs, and the inclusion of financial management goals in one’s Individual Education Plan (IEP) could increase autonomy and ultimately the quality of life of individuals with disabilities (Mittapalli et al. 2009; Suto et al. 2005b).

Unfortunately, there is a lack of consensus on what a successful financial education program and goals look like. Colleges have successfully developed a seminar-based curriculum that has been shown to increase students’ financial knowledge and financial responsibility but these homogenous programs will likely not meet the need of younger students and/or students with disabilities (Borden et al. 2008). It is likely that for youth and people with disabilities the most effective financial education program aims its curriculum at a unique population or individual with a focus on a specific financial concern, such as building credit (McCormick 2009).

More research is needed to ascertain current financial practices, preferences for learning how to manage finances, and perceived barriers among youth with autism specifically (Batavia and Beaulaurier 2001; Williams et al. 2008). Future studies examining the financial health and knowledge of people with ASD will help identify factors associated with financial vulnerability (Batavia and Beaulaurier 2001; Suto et al. 2005a). The goal of this study was to explore the experiences of youth with ASD as they transition to adulthood.

Method

Participants

Youth with ASD were recruited from three ASD treatment and support agencies in cities in the U.S. Midwest. Agency staff distributed study fliers to clients by mail and in local clinic settings. Interested participants contacted the research team to complete screening questionnaires. Eligibility criteria included youth between 16 and 25 years of age who have an ASD diagnosis (clinical record review), can read and speak English, and are able to engage in required study activities, as measured by adolescent- and caregiver-reported functional ability. The final sample included 27 youth. Based on preliminary data analyses and findings from previous studies, the sample is of sufficient size to ensure data saturation (Cheak-Zamora and Teti 2014; Cheak-Zamora et al. 2015).

Procedure

Participants took part in 30–60 min semi-structured interviews. Interviewers (n = 3) had experience working with adolescents with ASD and were trained on how to utilize the interview guide. Adolescents and their caregivers were sent written outlines of the interview process and the interview questions a week before the individual interviews. Participants were encouraged to contact the project staff if they had any questions and were permitted to bring an advocate (support person) with them to the interview if needed (none did). Upon arrival, adolescents and their caregivers participated in introductory “ice-breakers” with refreshments and unstructured conversations with interviewers. Interviewers then reviewed the consent form and interview process with the adolescents and caregivers (depending on youth’s age and desire for caregiver inclusion).

Interviews consisted of adolescents generally talking about themselves and their health care needs while completing the demographic survey, followed by a description of the interview topics, and a series of open-ended questions related to each topic. Interviewers also developed multiple choice reflection questions to make concepts more concrete and help adolescents switch to new topics (Kvale and Brinkmann 2009). Additionally, opportunities for breaks were provided if participants needed time to think about a question or appeared nervous or frustrated. As a result of these strategies, all youth, even those with limited communication skills, contributed within the interview session on discussion on every topic.

Measures

The measurement tool presented here is part of a larger study on health-related independence among youth with ASD. We developed the interview guide based on the authors’ experiences conducting qualitative research on youth with ASD (Cheak-Zamora et al. 2015), the health independence literature (Cheak-Zamora et al. 2014), and feedback from ASD practitioners, researchers, and caregivers. The research team piloted interview questions with clinicians, caregivers, and youth with ASD. The final guide included 12 questions with open and closed prompts. The research team developed preparatory multiple choice reflection questions related to the core questions to provide youth with visual reference point. Additional supports for youth included: (1) use of a white board to enhance their communication; (2) written outlines of the interview process and sample questions sent to participants prior to the interview session; (3) an introductory “ice-breaker” period with refreshments and unstructured conversations; (4) opportunities for breaks if participants needed time to think about a question or appeared nervous or frustrated. The majority of data for this analysis comes from the following three questions: “What does it mean to be an adult?”; “What are you looking forward to about becoming an adult?” and “What worries you about becoming an adult?” All participants also completed a demographic and health status survey.

Data Analyses

We analyzed interview data using theme analysis, including initial and axial coding, analytical memos, and organizational matrices and reports (Guest et al. 2012). All of the authors generated codes for analysis by consulting the existing literature on issues of independence in youth with ASD, and inductively, from data provided by the youth themselves (Guest et al. 2012). The final codebook included ten items, including codes to capture “finance,” the focus of this analysis. The second author and a Research Assistant conducted the analysis. Initial coding involved reviewing the transcripts line by line to identify how participants’ experiences matched codes. Both coders started the analysis by coding 25% of the data independently and then meeting to calculate coder agreement. After the first 25% of coding was complete, agreement was 60%. The coders clarified the code definitions, and coded another 25% of data. After the second round of coding, coder agreement was 90%, so the coders completed the analysis on all of the transcripts—meeting weekly to discuss coding, preliminary findings, and analysis memos. The coders then reviewed the initial coding analysis and conducted axial coding to consolidate, clarify, and expand the codes and identify final themes. Finally, a matrix that outlined and defined each of the final themes and a report that listed example quotes under each theme was created in order to organize the data for the results section.

Results

The majority of youth (n = 20) were male with a mean age of 19 years (range 16 to 25 years; Table 1). Most youth within our study described themselves as having Asperger’s Syndrome (41%) or Autism/Autistic Disorder (33%). The majority of youth rated their ASD symptoms as mild (75%), with half saying their ASD limited their activity compared to peers. While most participants (92%) reported having excellent or good verbal skills, many also said they had difficulty expressing needs using spoken language (23%) and difficulty with pragmatic or social language (15%). Although no youth reported having an intellectual disability 27% of their caregivers (as part of the large study) reported their child had an intellectual disability.
Table 1

Demographic characteristics and condition specific variables (n = 27)

Variable

Frequency

Percent

Demographic variables

 Gender (male)

20

74.1

 Age

  

  16–18

15

55.6

  19–25

12

44.4

 Race (white)

26

96.3

 Highest level of education

  

  Some high school

4

15.4

  High school

16

61.5

  Some college or vocational program

6

23.0

 Current Employment (yes)

12

46.2

 Hours worked or volunteered weekly

  

  Not working

11

42.3

  1–19 h

8

30.8

  20 or more hours

7

26.9

 Household structure

  

  One Parent

5

18.5

  Two Parent

21

77.8

  Live on my own

1

3.7

 Household Income

  

  Under $15,000

2

7.7

  $25,000–$49,999

8

30.8

  $50,000–$99,999

11

42.3

  $100,000 and over

5

19.2

Condition specific variables

 Current diagnosis

  

  Autism/ Autistic disorder

9

33.3

  Asperger Syndrome

11

40.7

  PDDNOS

2

7.4

  Autism Spectrum Disorder

2

7.4

  More than 1 of these

3

11.1

 Severity of ASD

  

  Mild

21

75.0

  Moderate

6

21.4

  Severe

0

0

 Limited abilities compared to peers

  

  Yes

14

50.0

  No

8

28.6

  Don’t Know

5

17.9

Three important sub-themes about finances arose in the data: (1) many youth defined being an adult and on their own by being able to manage their finances; (2) youth worried about their lack of skills managing their finances and expressed the need for further education; and (3) youth felt that the potential lack of income was a barrier to independence and exposed them to additional risks.

Managing Finances Defines Adulthood

When asked what it meant to be an adult or to achieve independence, many participants described financial concerns (n = 15). For instance, Trevor, an 18-year-old, said responsibility meant “paying the bills,” a task with which he needed help. Amber, a 24-year-old, said being independent meant “learning to count money,” and that to be an adult, she would need to “start paying for my own bills and, like, pay for my cell phone, pay for my food, pay for rent.” Zarah, a 17-year-old, also equated independence with “counting money” and said she was “working on that.” Jacob, a 17-year-old, was one of six youth who said that being independent meant “filing taxes…writing checks, make a bank statement, [and learning to] buy a house.” He said that he still needed to “figure all of that out.” He was not particularly confident, though, and reported that, “[I] would never own a credit card in my life.” For other youth, money was what worried them about adulthood. Rick admitted:

Well, I don’t want to pay taxes. And the driving thing, having a job…all of the responsibilities that come with [adulthood], sometimes I just want to stay a kid. I just don’t want to have a bunch of responsibility all the time.

Youth Worry about Lack of Financial Skills

Like several other participants, Liam, an 18-year-old, said he was excited about growing up for the chance to “earn money” but the majority of youth lacked confidence when it came to knowing how to manage their finances. Derek, a 17-year-old, had a savings fund, but said he also “liked to blow money.” He expressed great frustration that his employer paid him every 2 weeks because he needed money “now.” Many youth (n = 18) cited financial help as a skill necessary for transitioning to adulthood. A few participants, like Amber, expressed frustration that she did not learn about finances in school—and said she needed a finance class:

So many people don’t know how to do check books. I’m like, “Why don’t they teach this at school?” Instead of teaching [kids] something that very few of them will actually use ever again, or the only time they’ll use it is if they’re going to be a scientist or something.

Similarly, Emily, a 25-year-old, said that classes were needed to teach kids “how to work with money, both on the basic level of transactions, and then budgeting; and then understanding taxes and how that works… I mean, that’s just never covered in school.” Zarah, a 17-year-old, described needing basic financial skills saying, ”Like learn how to count money. I really don’t know how to count money, but I’m working on it, though.” Alex said he learned math but was rusty and needed to learn how to pay his bills so he could “have electricity in his house,” if he rented or owned a home. David, a 17-year-old, agreed that the math he learned in school was not sufficient and said he needed basic living skills and “at least a calculator” to be independent:

I mean, they’re giving you calculus, all this cr*p. I mean, for me, yeah, I might need that being in nuclear physics. But you know, everybody else, unless they’re going to be like the same exact thing or a carpenter, they’re not going to really need that.

Poor Financial Management Compromises Youth’s Independence

The lack of financial management skills, according to youth, had serious consequences for their ability to grow and develop into adulthood. Without an income or saved money, they could not drive, live on their own, or take care of a family. For example, Amy said she was 20, and was ready for her own place, but it was hard for her to save money and her parents did not always help her because they did not agree with her goal, saying, “You don’t need your own place right now.” David worried about being taken advantage of, especially in relationships—“I don’t want another girl that is just here for my money and stuff. I’m like, I work hard for this money. And then like I deserve this money for me and my benefits.” But he did worry about “taking care of my children and wife and making sure I have enough food on the table for them.” Steven, a 17-year-old, also said he needed money if he wanted to get married. Trevor said he would have to go to his mom for help with “buying and selling a house.” Derek expressed a real concern about what would happen to him financially “just in case my parents die.”

Discussion

Although financial management is one of many skills youth with ASD need to become independent, this study shows the importance of these skills and how they can contribute to increased independent and quality of life for youth within our study. Our research illuminates how youth with ASD perceive financial well-being, their experiences, and aspirations for the future. Three specific themes emerged from the youth’s dialogue: (1) Many youth defined being on their own by being able to manage their finances; (2) Youth worried about their lack of skills managing their finances and expressed the need for further education; and (3) The potential lack of financial management skills was viewed as a barrier to independence and exposed them to additional risks. Overall, youth were concerned about their financial wellbeing and wanted more education and resources on managing their finances.

Youth within this study desire more independence, even discussing wanting to live independently someday. Being responsible with money was central to youth with ASD’s desired to become independent, but few had the skills to do it. These findings align with other studies showing that youth with ASD and other disabilities report low levels of experience with money management and a lack of financial supports (Livingstone 2007; Wagner et al. 2005). Youth with ASD achieve independence at lower rates than other YSHCN, signifying a need for more focused independent skill building for this group (Hume et al. 2014). Although most youth would benefit from financial management education (Borden et al. 2008), the youth in this study seem to lack even basic skills, such as counting money, making a transaction, or paying a bill. Youth’s lack of financial management skills and stated desire for these skills should sound a call to policy makers and disability specialists to enhance funding and training in this area.

Youth within this study expressed a great deal of worry, anxiety, and frustration regarding their lack of financial skills. Youth reported lacking confidence and having negative experiences with managing their money. They were disappointed that these skills were not taught in high school. The literature suggests adults with ASD “have a fear of failure” and are more likely to avoid making decisions than their typically developing peers, especially when coupled with anxiety and depression (Luke et al. 2012; South et al. 2011). Taken together, it appears that youth’s fears, lack of knowledge, and perceived need for skills make financial decision-making challenging, if not impossible for youth with ASD. Research in other fields suggest that empowering children to take responsibility and make decisions early in life, while providing them opportunities to exert their independence, leads to improved decision making and independence in young adults and adults (Peters et al. 2016a). More research is needed regarding how these training practices can be applied to financial skill-building and decision-making for youth with ASD.

Research shows that young adults with ASD are vulnerable to predatory behavior, such as “payday” lending and having money stolen by personal assistants (Abbott and Marriott 2013; Mittapalli et al. 2009). Similarly, youth within this study recognized that their lack of experience and knowledge about financial management likely put them at increased risk. Our findings highlight the importance of implementing financial management programs early and tailoring them to the specific needs of youth with ASD in order to diminish these risks. Based on programs for people with other disabilities, we have also learned the importance of tailoring the material to the individual’s age and developmental needs. Further, key features of many successful programs are the identification of discrete objectives for each session and pairing financial literacy training with experiential opportunities (Huang et al. 2015; Mandell and Klein 2009; Mittapalli et al. 2009). Additional strategies are starting educational programs early, providing children and youth opportunities to use money with supervision, and addressing the youth’s general stress about financial situations. Other examples include minimizing stimuli, providing additional time, and offering encouragement (Luke et al. 2012).

Current educational programs and research on financial capability of people with ASD are scarce and neither are tailored to the individual needs of this population (Mittapalli et al. 2009). To our knowledge, no research to date has included youth with ASD in the development of these programs, resulting in a lack of input in selecting curricular topics and the method for providing information. Youth in this study asked for assistance and training on routine activities like counting money, paying bills, and writing checks, as well as complex activities such as paying taxes and buying a house. Participation in life skills courses and job training has been shown to increase independent living skills and empowerment in youth with ASD (Bonete et al. 2015; Neary et al. 2015; Taylor and Seltzer 2011). Studies are needed that develop, implement, and evaluate financial education interventions. Empirically validated financial training could be incorporated into existing school and job programs, and encouraged at clinical and therapeutic visits as part of the transition to adulthood and adult care.

Lastly, youth within this study participated in various academic and vocational services while in school. However, evidence is mixed as to the effectiveness of financial management programs in secondary education alone (Collins and Odders-White 2015; Mittapalli et al. 2009). Unfortunately, our participants had limited access to these services after exiting the secondary education system. Although many caregivers may understand the importance of developing these skills, they themselves often lack comfort and expertise in the area, and in any case are already overburdened (Cheak-Zamora et al. 2015). Taken together this indicates that the responsibility for building financial capability for these youth cannot be relegated to front line staff and caregivers alone and that there is a great need for these additional collaborations. Financial institutions can play an important role in providing additional support and expertise. These institutions should recognize their responsibility to partner with and advocate for individuals with disabilities and to provide sensible financial products for people with disabilities (Abbott and Marriott 2013).

Some institutions have taken initiative in providing more services for those with disabilities, but still more can be done for this population. For example, some finical institutions have dedicated phone lines to assist consumers, staff, and family members. Other institutions have developed models in which “companion” within the financial system service assist consumers in working through financial decisions (Williams and Porter 2011). The latter practice is akin to another emerging innovation, which involves “financial coaches” assigned to individuals to help guide decision making and develop financial capability (Center for Financial Security 2015). Human service agencies and financial institutions should invest time and money to develop resources and services for this population.

Limitations

Our study was a qualitative study; as such, we did not aim to collect generalizable data but to explore the experiences of specific youth in detail. Consequently, it does not reflect the experiences of youth who differ from our study population, such as participants from urban areas or racial and ethnic minorities. The use of individual interviews served the goals of data collection for most but not all participants. In future research, combining focus groups with individual interviews would provide more opportunities for individual reflection. Focus groups may also provide enhanced comfort and thereby improve participation among youth with communication challenges. In addition, the interview protocol at times relied on open-ended questions germane to exploratory research; asking detailed and direct questions about money management may result in more information about specific money problems, experiences, or needs.

Notes

Acknowledgements

The U.S. Army Medical Research Acquisition Activity, 820 Chandler Street, Fort Detrick MD 21702-5014 is the awarding and administering acquisition office This work was supported by the Assistant Secretary of Defense for Health Affairs, through the Autism Research Program, Idea Development Award under Award No. W81XWH-14-1-0604. Opinions, interpretations, conclusions and recommendations are those of the author and are not necessarily endorsed by the Department of Defense.

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no competing interest.

Informed Consent

Informed consent was obtained from all individual participant included in the study.

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Copyright information

© Springer Science+Business Media New York 2017

Authors and Affiliations

  1. 1.Department of Health SciencesUniversity of MissouriColumbiaUSA
  2. 2.Department of Health Sciences, School of Health ProfessionsUniversity of MissouriColumbiaUSA
  3. 3.School of Social Work and Truman School of Public AffairsUniversity of MissouriColumbiaUSA
  4. 4.School of Social WorkUniversity of MissouriColumbiaUSA

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