CC BY
30
ЗАРУБЕЖНЫЕ ИССЛЕДОВАНИЯ
FIRST PERSON PERSPECTIVES OF HAVING A DUAL DIAGNOSIS OF AUTISM SPECTRUM DISORDER (ASD) AND MENTAL ILLNESS
ПОВЕСТВОВАНИЕОТПЕРВОГО ЛИЦА ПРИ ДВОЙНОМ ДИАГНОЗЕ: ASD И ПСИХИЧЕСКОЕ РАССТРОЙСТВО
Данное исследование показало, что люди с рас- Karen Eastman стройством аутического спектра (ASD) часто PhD, Minnesota State
имеют сопутствующие психические расстрой- ArmstOiMMwMiankato, ства и диагнозы, из-за которых они сталкива- Mankato mn 56001; USA; ются с большими сложностями и проблемами [email protected] (Bitsika & Sharpley, 2015; Matson & Williams, 2014). Ранее в литературе было мало публикаций повествования от первого лица, описывающих опыт пациентов с сопутствующими психическими расстройствами. В большинстве исследований, освещающих данную тему, присутствуют описания вторичной интерпретации опросных листов, заполненных родителями или лицами, осуществляющими уход за пациентами, либо в исследованиях используются обобщенные выписки врачей. Данное феноменологическое качественное исследование восьми молодых людей с двойным диагнозом: ASD в сочетании с расстройством психического здоровья проводилось в течение нескольких месяцев. Было обнаружено, Beth R. Handler что они могут четко формулировать диагно- PhD, Clark County School стические характеристики, достаточно ясно D'st"ct' 5100 West Sahara и подробно, что позволило предположить, что Ave" Las Vegas'NV 89146
--USA; drhandler@ymail.
com
Как цитировать статью: Eastman K., Handler B. R. First Person Perspectives of Having a Dual Diagnosis Of Autism Spectrum Disorder (ASD) And Mental Illness. Повествование от первого лица при двойном диагнозе: ASD и психическое расстройство // Отечественная и зарубежная педагогика. 2019. Т. 1, № 1 (57). С. 127-159.'
они вполне понимают оба расстройства. Однако, более глубокий анализ данных показал, что участники исследования имели поверхностное и несущественное знание при высказывании ответов на различные ситуации. Данное исследование дает основания предположить, что клиническое предположение понимания или интерпретации диагностического состояния должно применяться с осторожностью, поскольку истинный уровень компетентности участников исследования интерпретировать и применять терапевтическую коммуникацию может быть гораздо ниже, чем может казаться на основании содержания и сложности формулировок клиента.
Ключевые слова: расстройство аутического спектра, психическое заболевание, коморбидность, молодые люди, феноменологические исследования.
Abstract
Research indicates that individuals with autism spectrum disorder (ASD) frequently present with a number of comorbidpsychiatric conditions and diagnoses that increase the difficulty and challenges they face (Bitsika & Sharpley, 2015; Matson & Williams, 2014). First-person narratives delineating the experiences ofindividualswhopresentwith comorbid, psychiatric conditions was not substantially represented in the literature. Most of the research focused on this topic reflects narratives derivedfrom secondary interpretations of checklists completed by parents and caregivers or through summative referral statements made by clinicians. This phenomenological qualitative study of eight young adults with a dual diagnosis of ASD and Mental Health Disorder was conducted over a period of several months, andfindings revealed these individuals were able to articulate diagnostic characteristics with a level of clarity and detail suggesting comprehensive understanding of both conditions. However, deeper analysis ofdata revealed that participants ' knowledge was superficial and unappreciable in mediating responses to varied situations. The work of this study suggests that clinical assumptions of comprehension or interpretation of diagnostic conditions should be applied with caution as the participants ' true level of competency to interpret and apply therapeutic communications may be far less than one may assume given the complexity and content articulated by the client.
Keywords: Autism spectrum disorders, mental illness, comorbidity, young adults, phenomenological.
1. Introduction
According to the Centers for Disease Control and Prevention (2018), one in 59 individuals in the US are currently diagnosed with ASD, and approximately 1.4% of the population worldwide. Individuals with ASD are charac-
terized and identified by impaired social and communicative abilities and restricted or repetitive patterns of behavior, interests, or activities (American Psychiatric Association (APA), 2013).
The literature makes clear the prevalence and impact of comorbid psychiatric conditions in individuals with ASD. Mattila et al. (2010) suggested that up to 74% of individuals with ASD also have a mental health disorder. Research indicates that individuals with ASD frequently present with a number of comorbid psychiatric conditions and diagnoses that increase the difficulty and challenges they face (Bitsika & Sharpley, 2015; Matson & Williams, 2014). Russell et al. (2013) reported that comorbid Obsessive Compulsive Disorder occurs in 30% of individuals with ASD. Additionally, a number of studies indicated that depression is very prevalent in those on the autism spectrum (Bitsika & Sharpley, 2015; Lugnegard, Hallerback, & Gillberg, 2011; Matson & Williams, 2014; Mayes, Calhoun, Murray, & Zahid, 2011). In fact, depression has been identified in up to 50% of individuals with ASD in one study (Mayes et al., 2011), and 43% in another study (Sterling, Dawson, Estes, & Greenson, 2008). Cederlund, Hagberg, and Gillberg (2010) noted that individuals who are considered to have a milder form of ASD or who exhibit more verbal skills are more easily identified as having depression. It was suggested that those with more verbal skills and milder ASD symptoms may be better able to report their depressed mood and other symptoms (Gotham, Unruh, & Lord, 2015). The increased rate of depression may be due to their awareness of the existence of social abnormalities and difficulties that lead to feelings of loneliness and isolation from peers (McPheeters, Davis, Navarre, & Scott, 2011).
There has been more research in very recent years with adults with at least average intelligence who have autism and a comorbid mental illness, although they are scarce (Bejerot, Eriksson, & Mortberg, 2014; Lugnegard et al., 2011). One area that remains understudied is the authentic experience of adults with this comorbidity. A review of the literature failed to produce first person narratives that describe the phenomenon of living with ASD comor-bidity or the interpretation of those disorders by the individuals themselves as told through a first person narrative.
In a review of related literature, it was determined that most research conducted on the topic of mental health issues in individuals with ASD involved a review of records, the use of checklists completed by parents and caregivers, and referrals of eligible individuals from clinicians (Bejerot et al.,
2014; Bitsika & Sharpley, 2015; Bitsika & Sharpley, 2016; Gotham et al., 2015; Lugnegard et al., 2011; Mayes et al., 2011). In other words, current literature mostly reflects secondary knowledge of how comorbid psychiatric conditions affect the lives and needs of individuals with ASD. This is a weakness in the literature that needs to be addressed. This study reflects an effort to mediate this gap in our knowledge base.
As the initial focus of this study was to better understand first person perspectives of people with comorbid diagnoses of ASD and mental health disorders, we conceptualized it as an investigation of an extant, but marginally understood phenomenon. As such, we decided to apply a methodology supportive of phenomenological study. According to Brantlinger, Jimenez, Klingner, Pugach, and Richardson (2005), phenomenological research helps us understand the meaning that individuals make of their life experiences. These researchers believe that firsthand accounts from individuals may help to understand environmental and other risk factors that may contribute to the development of psychiatric conditions in individuals with this dual diagnosis. As such, firsthand information may help identify specific practices that have an impact on support and services provided to this population, as well as those that are ineffective, otherwise not known to caregivers and service providers.
More specific description of methods and results of this qualitative investigation is presented below.
2. Problem Statement
What is the nature of alignment between the self-constructed conceptualization of the characteristics of their psychopathologies generated by adults with ASD and comorbid diagnoses of mental health disorders and those hypothesized or generated by others and present in the literature.
3. Research Questions
What perceptions do participants have on the etiology of their disorder?
What are their perceptions on the use and function of medications?
What are their perceptions on school experiences and social interaction in mediating effects of disorders on adult lives?
What are their perceptions on family interactions and characteristics on their adult lives?
How do the self-reported perceptions compare with common assumptions or interpretations generated by professionals supporting individuals in this population?
4. Purpose of the Study
To enhance the knowledge of the lived experience of people with comor-bid diagnoses of autism and mental health disorder to support development of more effective supports or therapeutic interventions.
5. Research Methods
Our original method selection was conceptualized around hermeneu-tic phenomenology as articulated by Merleau-Ponty (1962; 2006) and Van Manen (2014). We believed that this lens was most appropriate to our original purpose as it supports articulation of the global construction of phenomena of living with dual diagnoses prior to our theorizing, interpreting or otherwise explicating the origins or nature of phenomena revealed. Had our initial focus been on generating idiographic interpretations of the individual participant's conception of his or herself as a person with comorbid diagnoses and/or how that comorbidity affects his or her functioning, assumptions, interactions or identity, then we would have selected another method but we opted for an approach more suited to our goal of describing the global phenomenon.
One of our primary goals was to discover how study participants conceptualized themselves as persons with ASD and mental health disorders. We felt that the first-person perspective derived through application of this research model would support revelations of perspectives that would challenge systemic and normative paradigms. It was our goal to generate a study of first-person perspective that would explain rather than an affirmation or refutation of hypotheses generated by our own conceptualization of ASD, comorbid mental health disorders, or those of hypotheses and conclusions generated by others and present in the literature. Therefore, we adopted the phenomenological research model for its freedom from application of researcher preconceptualizations and privileging of the authentic, perspective of the participants (Husserl, 1970).
Site of Study
The Institutional Review Board at a medium sized state university in the
upper midwest gave approval for the study to be conducted. Participants were drawn from a major metropolitan area with a population of approximately 3.5 million. The population within this particular metropolitan city, though diverse, is predominantly white (63.8%), with one-third of the population having a bachelor's or higher degree (US Census, 2015). In this metropolitan area, 43% of children are from single parent families (Kids Count Data Center, 2015).
Participants were drawn from a variety of neighborhoods within and around the city center and generally reflected the demographics of the area with our participants in regards to ethnicity, religion, and race.
Participant Population
Building upon the phenomenological research model, the study described herein was intended to offer a contribution to the literature on ASD and mental health comorbidity. Specifically, the work investigated the experiences of young adults, all over the age of 18, who had dual diagnoses of ASD and at least one mental health disorder with the intent of revealing their firsthand perspectives relative to life with comorbid conditions.
For the in-depth interview studies, participants were recruited through snowball sampling by contacting staff at a local community college, a local state university, a high school transition program in a large school district, and four agencies that provide services to individuals with ASD of all ages. The agency staff were asked to contact young adults, ages 18 to 32, who have dual diagnoses of ASD and mental health disorders to solicit participation in the study, and to share the primary researcher's contact information. Specifically requested were those who were higher on the autism spectrum and with no intellectual or language delays so they would be able to effectively communicate with the researcher. This method of identifying potential participants is referred to as purposeful random sampling, a qualitative research method used to identify participants of interest for the study and to develop a systematic way of selecting cases without having advanced knowledge of what the outcomes would be (Corbin & Strauss, 2007).
Potential participants were identified who were competent, able to give consent, and able to clearly communicate experiences. All attempts were made to generate a gender balanced participant pool, but potential male participants opted out of the study to a greater degree than females. Attempts to generate a participant pool that reflected economic, racial, and ethnic diver-
sity were achieved. Out of the pool of identified potential participants, eight (8) young adults responded positively to our solicitations. We recognize the limitations created by this small sample size and ratio of females to males, but we believe the information garnered has value to the field, both theoretically and practically.
Selection of this method limited the number of participants we could include in the study, potentially limiting the generalizability of these results. However, we feel that the structure best supported the psychological factors present in the participant pool such that we solicit the thick descriptions of the phenomenon under consideration that would be most valuable to future research and support practices.
A total of eight participants agreed to participate, six females, and two males. These individuals ranged in age from 19 to 32, with the average age being 24.4 years. Seven participants had been diagnosed with Asperger Syndrome by either a psychiatrist or psychologist, and one diagnosed with ASD. The primary researcher had access to the evaluation reports where the diagnoses were made for all participants. In several of the cases, the diagnosis of Asperger's came about as a result of further evaluation after they were hospitalized for mental health crisis situations.
Interestingly, when communicating with contact people at the above agencies, in most cases they identified more females with whom they worked who would be interested in the study. When males were contacted, even actively recruited, with the exception of the two who did participate, all males declined to participate in this study. Given the current incidence of boys with ASD as being approximately 5 times more common than in girls (Centers for Disease Control and Prevention, 2015), it was believed that more males would have volunteered. This will be discussed later on.
Sound measures were taken throughout the study to ensure confidentiality of the participants. Each participant's identity remained anonymous and a pseudonym chosen by the participant was used throughout the study, including in the transcribed notes and summary. Although not all pseudonyms were consistent with what we would have selected, in order to honor the identity chosen by the participant reflected in the name, we did not dismiss their choice.
Signed consent forms were kept separate from the interview data in locked filing cabinets in a locked office. Tables One and Two contain summary information of each of the participants.
Joseph is a 32-year old male who has been diagnosed with Anxiety Disorder at age 20, and Asperger Syndrome at age 26. He has three undergraduate degrees, and had recently started a fourth degree, in Civil Engineering, but dropped out of the program after a couple of months. Joseph is a musician, and plays the clarinet and saxophone in a jazz band he started and manages. He is currently working with an agency to find employment, and is beginning to consider living independently with support from an agency that works with adults with ASD.
Vixie is an enthusiastic and talkative 19-year old young woman with diagnoses of Asperger Syndrome, Anxiety, and Depression. Vixie admitted that she had a bad temper when she was younger and often fought and argued with peers and family. She recently graduated from high school, and is currently trying to get her life situated. She is a fan of musicals, enjoys re-enacting lines and songs from shows, and she has a dream of traveling to Hollywood to meet famous celebrities and pay her respects to Robin Williams' star. She would love to be a famous singer someday.
Missy is 19 years old with several diagnoses. These include ASD, Attention Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder, Depression, Anxiety Disorder, and Bipolar Disorder with paranoia. She loves reading about baseball and watching baseball games on television. Shortly after she graduated from high school, she moved into a group home in the same town where her parents and two younger sisters live, and she sees them frequently. She works at a local day program for adults with disabilities. She is not interested in going to college but she worries about being able to find and keep a fulltime job. Missy is a worrier but she is also quiet and polite, and has a good sense of humor.
Mimi is 19 years old, and was diagnosed with having Bipolar Disorder when she was seven years old, and with Asperger Syndrome when she was nine years old. A diagnosis of Borderline Personality Disorder was recently made as well. She is a self-proclaimed rebel, and is quite proud of that title. Mimi has had a number of health issues and medical procedures her whole life, including stomach and colon issues, ear infections, and gluten allergies. She pretty much stays alone at home now, but would like to go to college for culinary training or for nursing.
Hermione is 25 years old and has diagnoses of Asperger Syndrome, Anxiety Disorder, and Depression. Her parents were divorced when she was in the ninth grade, and she lives with her mother but still sees her father most
weekends. When she was younger, Hermione was very involved in sports, particularly basketball and volleyball. Hermione has always had friends but she did switch schools a couple of times and it was hard to establish a new group of friends at the time. She would like to live on her own at some point but has been recently struggling with a seizure disorder and worries about how that will impact her independence. Currently, Hermione is working two part-time jobs, one at a drug store and the other is for data entry. She would like to get a job as a graphic designer someday.
Digital Emotions (hereafter referred to as D.E.) is a 26-year old male who was diagnosed with Asperger Syndrome at age 23. He had received a diagnosis of Major Depressive Disorder before being diagnosed with Asperger's; however, D.E. appears to have been reluctant to admit it then or now. The evaluations indicated that he was not at risk for schizophrenia or other psychotic conditions, however he fantasizes obsessively about schizophrenia, and appeared to be believe he has schizophrenia but not depression. He is not currently taking any medications. He was homeschooled his entire school career, and being in college is his first experience with being educated with others. D.E. is a doctoral candidate in Computer Graphics, and is very close to completing his dissertation but recently stopped working on it due to symptoms of depression.
Robin is 32 years old, and was diagnosed with Asperger Syndrome, Depression, and Schizophrenia when she was 13 years old. Robin claimed she had many side effects from the different medications she was on while growing up. She has experienced a number of unfortunate incidents as a young adult, resulting in her moving to a couple of different cities and apartments. Currently, she lives alone, and is active in her role on a National Self-Advocacy Board and a People First organization. While she has concerns about being able to handle a job, she still hopes to get a paying job, be married, and have children.
Quintana is 23 years old, and was recently diagnosed with Asperger Syndrome. She also has Depression. She likes to dress in Goth style, minus the dark hair and makeup. Quintana lives with her mother, and, for the most part, is estranged from her sister. While Quintana claims to not be one to socialize, she wants to stand out and not follow the crowd. Quintana spends her days working on the computer as she is currently taking online college classes for an Associate's degree, and hopes to attend a state university next year. She would like to be a film director one day.
Data Collection
In order to gather data that offered a firsthand account of life experiences of participants, a semi-structured interview method was selected. We selected this method due to its potential to solicit biographical reports with details prioritized by the participant instead of the researcher. This method allows the participants the opportunity to respond more elaborately and in greater detail than closed-ended questions (Brantlinger et al., 2005). Use of the semi-structured interview offered us the opportunity to develop a rapport with participants that further supported their willingness and ability to share their experiences and perspectives with a depth that allowed us to generate meaningful analysis and discussion of the results.
Procedures
As the participants contacted the researcher by phone, a description of the study was shared, the information on consent forms was discussed, and the list of initial interview questions was provided. Participants had the opportunity to ask questions, however, none asked any. During this time, the primary researcher shared her interests, experiences, and areas of expertise, as well as background information on previous research to initiate a feeling of comfort and trust.
Times and places to meet for the first interview were then set up. All of the participants were informed that the plan was to conduct two face to face interviews, each lasting approximately two hours, and that three or four hour-long follow up phone calls over a period of 6 months would be made for additional questioning. Prolonged field engagement with the multiple, in-depth interviews carried out ensured validity of the data. Initial interviews for each of the eight participants started with informal conversation for the purposes of getting to know each other and for obtaining personal and background information. It was determined that the interview could begin when the participants had no questions for the researcher and the participants indicated they were ready to begin.
Face to face interviews were held at different locations based on participant choice. The primary researcher met with Joseph, with D.E., and with Robin in empty classrooms each at a different university; with Vixie in a classroom in the transition program at high school, with Missy, Mimi, Hermione at their respective homes, and with Quintana in an empty office at the agency where she receives therapeutic services. No one else was present
for any of the interviews, and participants consented to the use of a recording device to record the interviews.
Appendix A contains the set of the interview questions. Half of the questions were asked during the first interview, and the second half during the second face to face interview. Follow-up interviews were conducted via phone with all eight participants, for clarification of any information that was noted while the interviews were transcribed. The initial questions that we asked all participants were the same in order to generate foundational information for comparative purposes.
Care was taken to ensure that the initial questions were read directly from the list which the participants also had in front of them. As is consistent with semi-structured interviews, follow up questions were added as determined to be needed by the primary researcher based on previous responses by the participants. Follow up questions were created for purposes of clarification or for elaboration of responses. These questions were intended to probe for further information. Examples of such probes were "Can you explain that more?" "Why do you believe that?" "Why is that?" "How did you feel about that?" and "Are you able to provide an example?" No explanation was provided by the researcher as to the reason of follow up or additional questions so as to assure the participants were not led to respond in a certain way.
All interviews were audio taped for subsequent review. After each interview session, the tape-recorded information was reviewed, sessions were transcribed, and anecdotal notes regarding the conversations and phone call responses were made. As the notes were read, recurring ideas and thoughts were documented and emerging patterns were identified.
Data analysis
Data were analyzed using an open-coding procedure. Throughout this process, patterns and codes were identified by isolating topics/comments/ issues, and noting their consistency throughout the data. As the field notes were read, a word or phrase that identified the main idea of the paragraph was written down. Fifty-eight words/phrases were identified at this point which were then narrowed down to 21 words/phrases as the most commonly occurring. These included topics such as diagnoses and characteristics, conflicts with schools/teachers/peers, bullying, exclusion, social isolation, medications, family history, family problems, and theory of mind. These 21 words are identified as codes, at which point concepts were identified.
Concepts were grouped and then named according to the characteristics of the grouped concepts. Six categories were named at this point including self-knowledge of ASD and MH conditions, significant issues related to MH, family, dealing with peers, school support, and future goals. Some of the original 21 codes were assigned to more than one category whereas others were clustered together into one specific category only. Eventually, one overall theme emerged with two subthemes.
Peer debriefing was utilized as a way to ensure reliability and validity of the data. The purpose of this was to provide a critical analysis of the data results and interpretations (Brantlinger et al., 2005). The peer reviewer was a former colleague of the primary researcher as a college professor, holds a PhD in Special Education, and has conducted several qualitative research studies ofher own. She had not been involved in the actual interviews, however, she was familiar with the phenomena being researched. The primary researcher shared summarized information about each of the participants with the peer reviewer, who then reviewed the transcribed tapes of the interviews and then coded responses by paragraph. In the peer review, 19 codes were identified; however, all of them were the same as, or very similar to, the 21 codes the researcher identified. See Appendix B for a list of the codes identified by the researchers.
The peer reviewer checked for procedural fidelity while reviewing the transcribed interviews to assure that the primary researcher had asked the same basic questions of all participants which were on the list of questions provided to each participant. Results of the procedural fidelity check showed that all basic questions were the same for all participants in both face to face interviews, and any follow-up questions during the face to face interviews or over the phone were tailored to the information provided in participant responses.
At each point in the process, second level member checks were utilized as a way to ensure validity. This strategy involved taking the data, analyses, and conclusions back to the participants so they could read, review, comment on, and confirm accuracy of the information. Participants were asked to comment on accuracy and provide clarification if needed. Each participant was contacted four more times after the two face to face interviews. Reasons for follow-up contact included clarification of comments from interviews, their understanding of the impact of diagnosed conditions, family influence and relationships, and issues related to future goals. In each case, there were one
or two corrections made. Finally, the themes that emerged from the data were discussed with the participants, and there was 100% agreement from the participants. Participants made comments such as "That certainly applies to my family," "I agree that these are problem areas," and "That really sounds like me!"
Care was taken to ensure reliability as well by creating as much similarity as possible. Procedures were explained the same way to all participants, all participants were asked the same basic questions, all interviews were audio taped and reviewed immediately after interview sessions, and the same information regarding the study was shared with all eight participants.
6. Findings
Overarching theme
Analysis across this data set revealed the overarching theme that, although these young adults may be able to articulate terminology or have the skills and knowledge to seem aware, the depth of their awareness is limited by their own characteristics.
All of the participants were able to list their ASD and MH traits, to recall ages and dates of diagnoses and the particular circumstances surrounding those diagnoses (i.e., when and where the diagnosis occurred, who made the diagnoses). They were also able to briefly explain the impact those traits have on their everyday functioning. They were fluent in their use of the words and descriptors that are a part of their diagnoses. All of the participants discussed how they learned about ASD through their own reading, research, and independent study, not through learning about it in school or even from family members.
Perceptions on Etiology of Mental Health Disorders. The participants had definite opinions as to the cause of their mental health disorders. Some identified one specific major life event as being something that triggered the onset of their mental health disorder. They did not seem to be aware of the existence of mental illness prior to this event occurring. Others felt it was a cumulative effect from being ostracized, bullied, and teased for too many years.
The Asperger's diagnosis for Joseph was both a shock and a relief to him. He said that he hasn't "really known what was going on with me. I knew I was different." He has spent time on the internet reading and learning about Asperger's, although he knows he has more to learn. He recalled exactly
how he "fell apart after just three days of military boot camp, not eating or drinking. I could not keep up with the demands, and was discharged with a diagnosis of Anxiety disorder." He believes that he had no signs or symptoms of anxiety prior to this experience.
Vixie shared that at until age 15, she did not know that she had ASD or what it was, but she did know of peers in her Special Education classes who were also diagnosed with ASD. She is concerned about her depression because it is something she struggles with often, mostly due to relationship issues, mostly with males. She was suicidal and hospitalized at age 16, and that one of the reasons she knows she will not be able to live alone is because she does "some crazy things when depressed," and she does "not want to do something bad" to herself.
Mimi was quick to explain how her diagnoses came about, starting with Attention Deficit
Hyperactivity Disorder and Bipolar Disorder at age seven, followed by Asperger's at age nine. She stated that she learned about what Asperger's is by "watching other people diagnosed with Asperger's and reading a book about it." She says that she "had no friends for many years, I was teased and called names, and was a loner because of that." Mimi suffered great bullying and ridicule, and was "made fun of for being black, fat, and stupid." She did not fit in, and by her teen years, it got to be too much for her. Mimi has attempted suicide three times, by cutting her wrists, overdosing, and by jumping out of a speeding car.
D.E. had spent considerable time on the internet reading about Asperger's as well as depression, especially depression in graduate students. While he feels that he is "doomed to have Asperger's," he believes that he is just "simply accepting what is known. It is impossible to recover from and is nothing but a fact." However, he mused that "there are some good things about having Asperger's which may be the reason for my academic success." He believes that once he is "finished with my dissertation that my depression will be gone," and that "being in graduate school, trying to collaborate with my advisor," was the cause of his depression.
Hermione identified the loss of aj ob she had been trained on as the trigger for her depression and anxiety. She had been trained for aj ob in one restaurant and was not able to transfer the skills to the new restaurant. She also had significant concerns with public transportation to get to work, and these stressors, she believed, was the start ofher depression and anxiety which she
believed did not exist prior to this incident in her life.
Robin disclosed that she went so long without an accurate diagnosis and that she was "frustrated, depressed, and treated like crap for so long, that it all came crashing down." Her first psychotic episode lasted for two years in middle to high school where she did a lot of "shoplifting and fighting with people." She contemplated suicide and was hospitalized. She believes her second psychotic episode was "caused by meds," and she found herself in "legal trouble for stalking a guy."
Perspectives on Medication. Joseph had been on one medication for a while but "it didn't really help" so he has chosen to not try others. And yet, he said that he continues to "struggle with feeling anxious and worried about the future," not having satisfying relationships with others, and identifying the right path to be on for his future. As he said, "my plans tend to change based on how things are going, and something always happens to mess things up." Having completed three undergraduate degrees and attempting a fourth one did not help him realize that he had not chosen areas of study that were the best for him.
D.E. is concerned about being on medications longterm; he feels that he could be on them "forever" and worries about side effects. This is only part of his concern because he also feels as though he needs to "try and remediate the situation myself." When asked how he could remediate it, he felt that he could become involved in a social group on campus. However, he chooses not to do so, and remains socially isolated.
Robin felt that she is "in remission from depression now" and does not need medications at this point. She was firm in her belief that the many medications she had been on have caused her mental health disorders to become worse or have caused significant weight gain.
Unlike most of the others, Hermione takes three medications and believes that her medications are helping in terms of sleep and having less anxiety. "I used to always be thinking ahead and what I needed to get done, and not be able to stop those racing thoughts which affected my sleep." She shared that she is "in a really good place right now," because of the medications. This was not the case even a year ago at which time, she "got less sleep, had more anxiety, and had more suicidal thoughts." Mimi, too, stated that by taking her two medications, they really do help. "I am more relaxed, sleep better, and am not as uptight. And I am not as moody."
Subtheme 1: School was a negative experience for these young adults, and
even now that they are out of school, they are desperate for companionship but have no mechanism to make that occur.
Perspectives on School Experiences and Social Interactions. The participants had a significant number of complaints about teachers and their experiences in school. They were able to identify one or two teachers that they liked, and a couple of them had a teacher who recognized their talent, and motivated and supported them. For the most part, no teachers identified or saw the bullying or isolation occurring nor did they do anything about it. Quintana shared that for purposes of disciplining, "the teachers would restrain me on the floor in front of everyone, and would lock me in time out." Mimi said that she "butted heads with most teachers," and especially challenged the younger teachers because "they didn't respect me," and did not try to understand her.
Robin could still remember how she felt when she would "be in tears in the nurse's station for being bullied, and no one ever defended me." She was especially appreciative of the one teacher who recognized her ability in history and talked her into joining the Knowledge Bowl, which she did for two years. That was the most positive experience of her school career, as the others knew about her ASD and MH issues but "were nice about it," and even "defended" her at times.
No one described any significant amount of special education programming they received while in school. It appeared as though support consisted of behavior management, a quiet room to go to when needed, and occasional small group work to help with homework or specific academic concepts. Other than that, they did not feel as though teachers accommodated their learning styles and did not adapt their work. There was no support for their mental health issues in any way. Vixie was one of only three who said that she "occasionally" went to the school counselor because "sometimes, you just want to talk about things with someone."
Each of the participants shared significant stories about being bullied, teased, and excluded when growing up. They were socially isolated and ostracized but did not know why at the time. They described time periods of having no friends, of being suicidal, and knowing they were different but not understanding why others would treat them the way they do. Even now they have little insight as to why they were bullied, teased, or excluded, although they did attempt to discuss this problem. For the most part, they were able to briefly explain why they struggled with making and keeping friends as a
child. Now that they are out of school, they continue experiencing not having any friends, they stay by themselves and are socially isolated, and are not interacting much with anyone outside of a couple of situations even though all but one expressed a desire to have friends and to be married one day.
For example, Robin had very few friends, if any, while growing up, and suffered what she says was "extreme bullying from both students and teachers." While she has some involvement as an advocate for a national advocacy organization, when not participating in that, she said that she "continues to struggle with maintaining relationships" and is quite isolated, spending a lot of time at home by herself "watching educational programming and the weather on television."
Quintana believed that she only has "mild" depression, however, she spends her days "sleeping in until quite late, working on the computer for my online coursework for several hours a day," and stated that she has not seen others she went to high school with since graduation. She shared that she uses the internet as an escape from the rest of the world when "there are loud noises around me and I am feeling overwhelmed."
Joseph shared that he felt he had been "just a goofy kid," and now sees that the few peers he did befriend while growing up were "not good people." He said that there were many school years that he had "not a friend in the world." When he was growing up, he said that he tried to be like everyone else but he "was the easy target" to be bullied and ignored. Even now he feels ostracized in college. The few students he was able to identify with in college had been Somalian students because "I feel like we are alien to this world."
Vixie described many situations where she ended up feeling disappointed in people she thought were friends, but found out they were using her or lying to her. When she was younger, she used to get into a lot of fights on the playground because, while she felt she was always on her "best behavior," if others "ticked me off, I couldn't let it go."
Missy felt that she was not bullied in school, but she always feared what others would think of her for what she preferred to wear or if she needed to leave the classroom, or if she did something that was out of the norm. She did not appear to understand that this was a type of bullying. Mimi suffered from significant bullying in her elementary school years, and swears that she survived by fighting other students often. She was suspended from school during her senior year. Mimi, like most of the others, stated that they she has not seen people from school since she graduated.
Quintana described her troubled childhood of being extremely violent and temperamental. She experienced bullying and isolation while growing up, and was very lonely. In high school, she was "really depressed because I had no friends." She was considering suicide, and was about to carry it out when she met one female friend in an otherwise all-male high school class. Because they were the only two girls, they "bonded," and to this day, she believes that this girl "saved her life," and stated that "it's amazing what the power of having just one friend can do." Quintana was the only one of the participants to be able to look back and see that because of her past with all of the fighting and temper issues, maybe her classmates were "leery" ofher as they continued to grow up.
It was noteworthy to consider the conditions regarding the isolative adult life that they now have, and that the opportunities for social interactions are just not there. Quintana had described "being popular" in high school finally because of the TV productions class she took. With that opportunity gone, she has not been able to find similar activities to be involved in, and has not seen any of her high school classmates since graduation. Vixie shared that the only reason she went to school was to see her "friends." None of those "friends" have time for her now, and she feels as though "no one cares about me." As mentioned previously, Joseph is the coordinator of a band he started but no one from this group ever asks him to hang out or do things together outside of rehearsals or performances, and once he graduated from college, he lost contact with the Somalian students he had paired up with in classes. Even though Missy lives in a group home, the other residents are more than twice her age and she keeps to herself. At the workshop where she works, she does talk to one person she knew from her Confirmation classes. She believes that she prefers "being alone."
D.E. was homeschooled and had limited experiences with other children in his neighborhood, so he did not experience bullying or exclusion growing up. He did, however, "experience a lack of social interaction opportunities and did not experience satisfaction in the activities my mother did try to arrange for me." He stated that "my mom could not set a good example of social behavior. Currently, I still do not have a clear idea of what a friend is." At the present time, he has an apartment roommate but there is no interactive relationship. There is a group of students at his college who get together to play video games but he has chosen to not participate due to "focusing on my studies," and he felt as though he is not as knowledgeable anymore about the
types of games this group plays. He is not interested in getting up to speed so that he could interact with the others playing the video games.
Subtheme 2: Challenging or unhealthy family relationships compromise these young adults' ability to reframe their own responses and behaviors to match norms outside of their home lives.
Perspectives on Family Dynamics and Characteristics. According to the participants, there was an overwhelming number of cases of several family members having been diagnosed with a mental illness in each of the participants' families, in both immediate and extended family members. Many of the families moved around a lot, constantly uprooting the child. Several participants described poor relationships with siblings and being estranged from family members. Divorce, or just the parents never having been married or living together, was common, and relationships with fathers was sometimes absent or distant. Physical and emotional abuse between parents was described, along with problems with alcohol.
According to D.E., his mother has symptoms of psychoses, his father has social anxiety, and his paternal grandfather had Bipolar Disorder and committed suicide. He shared that he is "closer to my father in that I can talk to him about how I am feeling about things," however he still describes that relationship as being only a "reasonable" one at best. He avoids talking to his mother about things that are important to him even though he lived primarily with her growing up. His parents have never lived together nor have they gotten along. He stated that there was "some truth to the idea that when I was growing up, I had no friends because I had limited contact with kids my age." He lived with his mother and stepfather while growing up, although he saw his father often over the years. There was always a great deal of tension between his biological parents.
According to Vixie, her mother has a "disability of some kind," and that there are extended family members with ASD on her mother's side. Her brothers and nephews have emotional and behavioral disorders. Vixie has always lived with her mother who had been the main caregiver. She is close to her mother but with 4 younger brothers, it was never quiet at home and it was too stressful for her there. She recently moved in with her father who she tends to portray as a great father but she has never spent a great deal of time with him. She experienced a great deal of unrest during childhood by attending schools in different districts, and one year, she lived with her father, then returned to her mother. Vixie had lived with her mother and
younger siblings while growing up, but saw her father occasionally. She and her family moved around a lot.
Missy stated that her parents have been diagnosed with depression, her sister has PDD
Pervasive Developmental Disorder (PDD) and depression, and her cousin has classic ASD. This information was verified by her mother when called in by Missy to clarify this. She felt as though she is much closer to her mom than her dad who she feels she has very little in common with. Missy and her family moved only one time, to a different state, when she was young.
According to Joseph, his mother has anxiety, he believed that his paternal grandfather had Asperger's, and his father has an articulation speech impairment just like Joseph. Joseph shared that he had been closest to his grandfather before he died, and believed that he was "a carbon copy ofmy grandfather, I am just like him." He has always had a strained relationship with his father and has always felt that he was "just not good enough" for his father. He and his parents moved many, many times because as he said "my parents just got restless and wanted to move." He knows that he missed out on friendships because he had to start over again, and "every time it got harder." When discussing the reasons for the moves, he did state that he felt "the way my mother was with the neighbors" made it necessary for them to move.
Robin listed off a number of mental illnesses in her family. According to her, her brother has panic disorder, a drinking and gambling problem, and dyslexia. Her mother has bipolar and many health problems such as COPD and Type II diabetes. Her father had paranoid schizophrenia, and apparently found out on his 50th birthday that he had Asperger's as well. Her paternal grandfather committed suicide, and her paternal grandmother has a history of ASD and mental health issues, and struggled with alcoholism. She is not close to her brother who she feels "if it was up to him, I wouldn't exist." While she has a somewhat difficult relationship with her mother who "still treats me like I am 13," she sees her for a week once a month. While Robin described having a somewhat difficult relationship with her mother, she is still very much involved in her life, communicates frequently, and sees her for a week once a month. She and her mother moved several times and she changed school districts 4 times. She lived with just her mother and brother while growing up as her father left when she was young and moved to a different state. She had seen him for short periods of time occasionally over the years but he died suddenly ten years ago. His sudden death a couple of years
later hit her hard and she shared that her "mother had me heavily medicated for fear I was suicidal again." She believes that her father was the "only one who understood me" even though she rarely saw him.
Mimi shared that her father has Bipolar Disorder, Asperger's, and anger management issues, and that her cousin has ASD. Mimi has always lived with her mother, too, and they have moved 9 times over the years. She could recall the age she was at each move, and where they moved to. Many of the moves were because of men coming into and out of her mother's life.
Quintana said that her mother has been diagnosed with bipolar disorder and "was very unstable and got angry very easily" while Quintana was growing up. Her father was abusive to her mother, and at one point was abusive to her as well. She has always had a "rough relationship" with her sister who has called her names and put her down. Her sister is moving across the country and Quintana is fine with that as she is basically estranged from her sister. She is very close to her mother. She and her mother did not move around until just recently when they moved to a different city. Her mother significantly abused alcohol as a young adult, and has told Quintana many stories of her drinking days. She shared how her mother has "told me lots of stories about how much she used to drink and how other people thought she was so cool when she was drunk." Her own father was not involved in her life, and the one time she reached out to him at age 20, she experienced some emotional and other trauma in the process. She stated that she will "never see him again."
Discussion
This research project of eight young adults with dual diagnoses of ASD and MH disorders gave some insight into their thoughts, feelings, and perceptions of their life experiences. While the sample in our study was small, we believe it is the first regarding the first person perspective in young adults with this comorbidity.
Most studies included parental involvement and consent for their children, even adult children, through their participation in a treatment center or clinic-based programs for individuals with autism and from advertising within the treatment facilities (Bej erot et al., 2014; Bitsika & Sharpley, 2015; Gotham et al., 2015; Sterling et al., 2008; White & Roberson, 2009). The consent of parents from these facilities or agencies may explain why so many males have been the subjects in much of the research.
Our method of recruitment was different, in that we made cold contacts with several agencies without having the benefit of working at those agencies or with the individuals. Most of our agency personnel were quick to identify women they believed would be interested in participating. This was also found in the study by Lugnegard et al. (2011), who noted that women were "more likely to respond" to the request for participants, and were "more willing to participate in the study," (p. 1916).
As previously mentioned, we had an underrepresentation of males in our study. This is similar in the study by Lugnegard et al. (2011), where an underrepresentation of males with ASD in that study was noted as well. They posed two possible explanations for this in that "it is highly possible that the non-responding individuals (most commonly men) represent a more disabled subgroup compared to the total population...or have more severe psychosocial problems including homelessness, imprisonment, and substance abuse" and that there may be more "increased health care-seeking behaviors among women (Lugnegard et al., 2011, p. 1916). When the participants in our study were asked for a possible explanation of the underrepresentation of males in our study, they all stated that males may not have volunteered to participate because of the stereotype of males needing to hide their feelings and not appear to be weak or to seek help.
The studies that we found generally had parents completing checklists or rating scales, while a couple did have the adults themselves also completing these (Bejerot et al., 2014; Bitsika & Sharpley, 2016; Gotham et al., 2015; Lugnegard et al., 2011; McPheeters et al., 2010). Strang et al. (2012) found that while parent report is a "quick means of quantifying the emotional functioning of children and adolescents with ASDs, parents may have difficulty differentiating emotional and autism symptoms." They noted that future research should also include self-reports. These findings support our desire to hear directly from the affected individuals themselves rather than from parents or third party documentation, and fill a gap in the professional literature.
In looking at our results in relation to the studies where secondary information was obtained through checklists and rating scales, we found some interesting comparisons. In White and Roberson-Nay (2009), parents completed rating scales while professionals administered diagnostic measures questionnaires to the children. There were significant differences between how the parents rated their children with ASD and anxiety and with the
self-report of the adolescents themselves. Parents indicated that anxietywas a result of the children being less likely to initiate interactions with peers. The adolescents experienced social loneliness but not emotional loneliness, suggesting they have their needs met through interactions with others rather than peers, perhaps their parents. It brought up the question of who should be believed - parents or the youths themselves? White and Roberson-Nay (2009) also suggested that the youth "may have difficulty recognizing their feelings and behaviors as symptomatic of anxiety" (p. 1012). As noted in our results, we, too, found that our participants' knowledge of their conditions was superficial and unappreciable in mediating responses to varied situations.
In McPheeters et al. (2010), parents reported significantly higher rates of concerns regarding bullying, self-esteem, and success in school with their children who had both ASD and depression or anxiety, than parents of children with ASD only or with neither condition. They also noted the increased risk of children with ASD developing depression or anxiety in adolescence. Our results were similar to this in that the participants did perceive issues with bullying and social concerns while in school, and that their psychiatric conditions initially appeared, or worsened, as they aged.
Mayes et al. (2011) found that in children with ASD, "anxiety and depression increased significantly with increasing age and IQ" (p. 332). They noted that students on the higher end of the autism spectrum would be more likely to be educated in the mainstreamed setting and experience greater stress with those social demands, resulting in developing anxiety or depression. We found this in our study as well. Several of the participants noted their struggles with interacting with others, and experiencing bullying and isolation, as described in detail in the Findings.
As noted in the Findings section, the participants' verbal skills and large vocabularies, typical of those on the higher end of the autism spectrum, were useful in their knowledge of their diagnoses, conditions, medications, and other related issues. However, those verbal skills tended to be misleading. There was a lack of depth of understanding of the situations they encountered growing up and in which they find themselves now. Getting older and maturing has resulted in a greater ability to look back and begin to analyze what went wrong, but these individuals are not equipped to fully and effectively advocate for themselves. They continue to have a need to develop more self-awareness, and then subsequently how to self-regulate and self-
monitor. This is a need for most individuals with ASD (Lee, Simpson, & Shogren, 2007).
However, throughout the interviews, the participants were able to describe events and circumstances that they believed contributed to their mental illnesses. They discussed their feelings of inadequacy and loneliness, although they did not appear to understand why. Being able to report on these feelings is consistent with findings in the literature, especially with those on the higher end of the autism spectrum. In Gotham et al. (2015) the findings "support the value of self-report on depressive symptoms in the verbally fluent ASD population" as their participants rated themselves frequently on symptoms such as negative attributions about self and situation (p. 500). Gotham et al. (2015) noted that these results were very different from previous studies where it was indicated that these symptoms "might be particularly difficult to express in ASD and therefore less useful markers of this comorbidity" (p. 500).
As noted earlier, we found that depression and anxiety were common among our participants. This is highly supported in the literature. Identifying an understanding how of how mental illness presents in those with ASD is a focus of current research as outlined below.
Half of the people in the study by Lugnegard et al. (2011) received their ASD diagnosis after the age of 19. We found this as well with Joseph, D.E., and Quintana. Hermione discussed how it wasn't until age 19 that her team decided to take more of a closer look at an early diagnosis of Asperger's to determine its role in her daily challenges. Lugnegard et al. (2011) also noted that "academic or professional failure in combination with psychiatric symptoms" was a starting point in making a diagnosis of ASD (p. 1915). In general, we saw the opposite in that a crisis of some kind was the trigger for the diagnosis of mental illness in several of our participants.
Lugnegard et al. (2011) also noted there to be a strong possibility of a high rate of major depression in young adults with ASD throughout their life. In that study, some had had one major episode, quite often during negative life circumstances. However, half of their participants had suffered recurrent depressive episodes. As discussed in the results section, our participants were able to identify what they perceived to be the onset of mental illness. For some, it was one major episode, while for others, it was a cumulative effect of years of bullying and social failures in school. Bejerot et al. (2014) noted that repeated rejection was an explanation for social avoidance or anx-
iety. Carrie, Quintana, Joseph, Robin expressed this as well. Lugnegard et al. (2011) commented on the struggle these individuals have with interpreting social cues and understanding the subsequent impact on how others perceive them. And, as mentioned earlier, McPheeters et al. (2011) found that feelings of loneliness and isolation from peers may come from some level of awareness of social abnormalities and difficulties, and subsequently, depression. Most of our participants struggled with understanding why they were treated the way they were growing up. Even though they came to understand that they were "different," they did not understand why that contributed to them not being accepted.
While being highly verbal and without intellectual impairment helped our participants to discuss their perceptions of their life experiences and their reactions to those experiences, it did not help them see their role in their circumstances nor how to address the depression and anxiety that came about because of these experiences. This lack of understanding has had a significant impact on their daily routines today. Bejerot et al. (2014) noted that "individuals with ASD are likely to suffer from social anxiety, which to a large extent may contribute to the social avoidance typically seen in this population" (p. 707). In our study, this was seen in all of our participants to varying degrees. These participants live quite isolated lives, and have extremely minimal interactions with others. A question can be raised about whether this lack of understanding is solely a result of ASD traits, and which, if any, ASD traits "could be shown to relate to depression, then treatment planning might focus upon those ASD symptoms as a potential method of reducing or avoiding depression" (Bitsika & Sharpley, 2016, p 318). This is especially so for those on the high end of the autism spectrum. It was suggested in Strang et al. (2012), that every child with ASD without an intellectual disability is at risk for emotional difficulties. This may be where these individuals' needs are different from those on the higher end of the autism spectrum but who do not have a mental illness. Hermione explained it well when she said that the combination of ASD and MH conditions has a big impact on her everyday life. "Trying to understand the social cues and body language is challenging, and the anxiety of not understanding or knowing these ahead of time or what will be happening impacts my life all of the time." Joseph felt that the combination of both diagnoses does not create a balance in his life. With the anxiety, he said that he knows "it's always there, and if I know something will be stressful, I try to avoid it. But if I stay away too much, then I'm stuck at
home all of the time," and he becomes even more socially isolated.
The number of family members with mental illnesses brings up several issues. Sterling et al. (2008) noted the family history of depression as well. If parents and family members are struggling with mental health issues themselves, do they engage in behaviors and responses that are not consistent with healthy practices? Have these young adults found comfort in imitating and engaging in these patterns of behavior that are consistent with their parents, and are they going to default to those patterns when they are struggling themselves over time? Or was their coping compromised because of pre-existing, undiagnosed psychiatric conditions? The participants truly believed that they knew what triggered their mental health conditions, and did not believe it existed prior to certain events happening. We need to be able identify who is at risk and intervene earlier. Bitsika and Sharpley (2015) identified a need to investigate the aspects of ASD that may predict depression. Sterling et al (2008) noted that there was a need to identify "factors that are associated with vulnerability to developing" psychiatric conditions, and to investigate "potential risk.. .factors related to the development of depressive symptoms" in these individuals, as well as the importance of obtaining a "clear understanding.. ..of the factors that are associated with vulnerability to developing these symptoms" of psychiatric conditions (p. 1012). Some of this may have been addressed in this research project in terms of the young adults' perceptions of triggers for their mental health diagnoses, and the incidence of mental illness in family members.
Finally, the lack of ability to effectively self-advocate and self-mediate that we identified creates a false reality for teachers, therapists, and caregivers. It limits the level of care and type of care these individuals will be able to receive because their symptoms and overall functioning may be misinterpreted as they appear to be more knowledgeable than they are. Practitioners need to be aware of this when creating treatment plans and methodologies.
Appendix A
Sample Interview Queries/Questions
1. How old were you when you were identified as having autism?
2. What mental health disorder are you diagnosed with, and when did you receive this diagnosis?
3. How do you feel about having autism? Do you believe this diagnosis?
4. How do you think your family feels about your diagnoses - parents,
siblings, extended family?
5. Do you currently take, or have you taken, medications? Which ones? Do you feel they are/were helpful to you?
6. Do any of your siblings have any language or social or cognitive delays or have a diagnosis of ASD?
7. Childhood years -- Please describe your life, starting with what you remember as a child. Where did you live, what was your family life like, what activities did you participate in, what interests did you have?
8. Middle to High school years -- Please describe your life, starting with what you remember as a young teenager. Where did you live, what was your family life like, what activities did you participate in, what interests did you have?
9. Now - where do you live? What is your daily life like?
10. Ifyou have not gone to college, do you plan to? What obstacles do you see there for you? What strengths do you have to do well in college?
11. Do you have a job? If so, what is it? How long have you worked there? How many jobs have you had? What are some strengths for you on the job and what do you struggle with?
12. Have you participated in any special kinds of programming or services - as a student growing up in school and now? If so, what were they and what were your experiences in those situations?
13. How do you respond/cope when you are stressed or frustrated, or during times you may not be emotionally stable?
14. Do you have a support system? If so, what type of support?
15. What is your relationship like with your family?
16. In what ways, if any, are you like your parents? What are the differences? How do you feel about those similarities and differences? Do you strive to be like yourparents?
17. Did you have friends growing up? Do you have friends now? Either way, please describe the relationships and interactions you remember from elementary years to now.
18. Who was your favorite teacher growing up? Least favorite? Why?
19. What your hopes and dreams for the future? What are your fears?
Codes identified through data analysis
Appendix B
Primary researcher's codes
Peer reviewer's codes
Asperger Disorder impairments
Anxiety Disorder and Depression psychoses
Knowledgeable about traits
Hospitalization
Suicidal
Theory of Mind
Sleep issues
Major life event to trigger mental illness issues
Keeps to self
Family issues
Problems with teachers
A teacher who motivated him/her
Did not/do not fit in
Isolated/excluded
Bullied
Moved a lot
Family history of Mental illness
No real SPED support, occasional school counselor
Lives with mother
Advice for teachers
Future goals
No intellectual or language
Depression, anxiety, no
Can list ASD and MH traits Psychiatric hospitalizations Suicidal thoughts and actions Theory of Mind/language (did not identify) Origin of mental health
Seclusion
Family relationships
Teachers not trained
Some teachers encouraging
Not fitting in
Isolated
Bullying
Family moving/disruptions Family dysfunction Only mainstream settings? Paternal absence (did not identify) Prepared for future?
7. Conclusion
Our findings offer a small, but important picture of how individuals with ASD and comorbid mental health conditions view their own situations and the conditions that contribute to their life experiences relative to their dual diagnosis. As with all research, this work suggested areas for future research. We recognized that the incidence of mental health diagnoses in the family members of the young adults interviewed for this project was high. More research needs to be completed to examine the reasons for this as outlined in the Discussion section above. We would benefit from knowing, for example, if these individuals are responding the way they do because of what they
have learned in their families or if a pre-existing, undiagnosed mental health condition already exists which impacts their ability to cope.
Due to a disproportionate number of female to male participants, we recognize that our findings may reflect a skewed perspective. This potential skewing of perspective is particularly concerning as it may serve to generate inaccurate assumptions of perspectives across genders when, in fact, male perspectives may be substantially different from that of females with similar characteristics, experiences, and/or conditions. As statistics put the ratio of demonstration of ASD as 4:1 male to female, we recognize the potential limitations to generalizations of the findings of this study. Many additional contacts had been made to the agencies identified earlier to identify potential male participants. Four potential male participants declined to participate without stating reasons why. Additional work focused on the male perspective is warranted as it could reveal the need for differential responsive therapies based upon the gender of the client. However, as we found, the males in this study were quite articulate and provided significant details and depth in their responses overall. We found them to be highly valuable in this study. Despite the limitations for generalization created by the overrepresentation of females in this study, we believe the first-person perspective generated has high value to the therapeutic community as it offers insight and a perspective not previously published in the literature.
Contemporary, extant models for providing support for the entire family and for the individual should be examined. Specifically, we need to ask: What systems are now in place? Do those systems address the challenges revealed in this study? What changes need to be made to offer greater support and to reduce existing barriers to effective supports? We need to examine how we facilitated accurate interpretation of social interactions and the intentions of others as well as the development of positive social skills throughout the entire lifespan of individuals with ASD. This development will be enhanced by the examination of firsthand perspectives like those offered in this study. Finally, we believe further expansion of this work that compares the firsthand accounts of adults with positive outcomes with adults who have experienced more negative outcomes would offer valuable insight into variables that contribute to the respective trajectories.
Because treatments in schools help to reduce common barriers to accessing community services (Husky, Sheridan, McGuire, & Olfson, 2011) schools are most likely a first point of contact for these students. Teachers,
school counselors, social workers, and school psychologists would be the professionals working with students on these issues. We need to provide a framework model for these school professionals, but first it should be determined what their knowledge, experience, and comfort levels are for working with students with ASD and MH diagnoses. It appears to be important to diagnose early, and screen all students high on the autism spectrum for mental health disorders. Pre-service and in-service training may need to be provided to these practitioners to increase their understanding of these conditions and their ability to effectively work with these students in the school system.
Although this study provides insights into the experiences of eight young adults with ASD and comorbid diagnoses of mental health disorders, the results must be interpreted with some caution. This study was confined to eight young adults with this dual diagnosis, and who responded to a request for volunteers through recruitment efforts of the primary researcher. The information received from the participants was based only on their perceptions of their individual experiences with their diagnoses. Other than receiving confirmation of official diagnoses of Asperger Syndrome and a mental health disorder, verification of facts shared by the participants was not obtained through conversation with anyone else. As mentioned earlier, males were underrepresented in this study. While every effort was made to create a gender-equitable participant pool, males did not volunteer as we had hoped. In this study we took a global perspective, focusing on eliciting an understanding of the general human response to ASD and comorbid mental health conditions. As such, we did not account for, or differentiate among, such experiences on the basis of gender, age, ethnicity, socioeconomic status, nationality, or religion. None of the participants knew or met each other, nor did they recommend any other participants for the researcher to contact. Therefore, the results of this study may not be representative of all young adults with ASD and comorbid MH disorders but they do provide preliminary findings that may be of interest to others who are exploring this comorbidity.
The revelations and insights provided by these participants offered insights and first person perspectives not readily available in current literature. While expected variations of experiences and interpretation were evident, the interview content revealed important consistencies. Of greatest importance, analysis across this data set revealed that these young adults were able
to apply clinical-terminology with contextual accuracy or otherwise appear to have the skills and knowledge to support meaningful in therapeutic activities. They can name and give an almost clinical description or analysis of their disorders, characteristics or deficits as well as those of others with whom they interact. In other words, they all have conceptual knowledge of their diagnoses and assumptions as to the factors that contribute to the negative experiences of associated characteristics, but they do not have functional understanding of how to effectively mediate situations or their personal responses to those factors. This difficulty affects their ability to self-advocate for assistance or adjust their responses such that they can consistently engage productively or effectively in adult life. We believe this theme suggests a comprehensive failure on the part of providers to recognize this limitation and offer deeper, personalized support and intervention for its mediation.
It appeared that for the most part, the participants did not have the depth and understanding necessary to effectively self-advocate. Their ability to self-advocate and self-mediate appeared to be higher than it truly is. For example, some of this was noted when participants discussed the use of medications. Our study participants did not demonstrate an understanding of their mental illness as an organic condition that could be remediated by the use of medications. Interestingly, five of the eight were not using prescribed medications. It may be that those who are opting to not use prescribed medications may be doing themselves harm based upon a failure of authentic understanding of the value and possible effects of taking that medication.
The fact that all of our participants expressed narratives that reflect negative school experiences. It was clear that their school experience did not leave them with the skills necessary for adult development of quality, meaningful relationships. They all expressed a strong, if not desperate, desire for companionship, but none had an effective strategy or mechanism to establish or maintain interpersonal relationship. This failure in the development of the skills and strategies necessary for such relationship development suggests a need for investigation to find and establish school-based curriculum for development in this area for this population.
Finally, participant narratives demonstrated for the most part, that the participants had not made any connections between their own mental health situations and their family members' situations, even though they had similar diagnoses and struggles. In fact, some of them are extremely close to their parents, sometimes romanticizing a relationship with their fathers who were
not overly involved. It may be that challenging or unhealthy family relationships compromise these young adults' ability to reframe their own responses and behaviors to match norms outside of their home lives. It may also be that the comorbid features associated with deficits in Theory of Mind may limit the individual's ability to truly recognize familial mental health characteristics associated with the interpersonal dynamics within their family.
Overall, the findings of this study serve to reveal the true power and problems with the social awareness and interpretation common to people with ASD. Analysis revealed that social interpretation and perspective taking is underdeveloped in each of these participants, and that skill development in interpreting and responding to negative reactions in others is lacking. The lack of understanding or accurate approaches to perception of others fosters isolation and, very importantly, these people are creating their own interpretations that are contributing to fantasized relationships that then are not fulfilled or are self-demeaning.
References
• American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Arlington, VA: Author.
• Bejerot, S., Eriksson, J., & Mortberg, E. (2014). Social anxiety in adult autism spectrum disorder. Psychiatry Research, 220, 705-707.
• Bitsika, V., & Sharpley, C. (2015). Differences in the prevalence, severity, and symptom profiles of depression in boys and adolescents with an autism spectrum disorder versus normally developing controls. International Journal ofDisability, Development and Education, 62,158-167. doi :101555698.
• Bitsika, V., & Sharpley, C. (2016). The association between social responsivity and depression in high-functioning boys with an autism spectrum disorder. Journal of Developmental andPhysicalDisabilities, 28, 317-331.
• Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71, 195-207.
• CederlundM., Hagberg B., & Gillberg, C. (2010). Asperger syndrome in adolescent and young adult males. Interview, self - and parent assessment of social, emotional, and cognitive problems. Research in Developmental Disabilities, 31, 287-298.
• Centers for Disease Control and Prevention. (2018). Retrieved from http://www.cdc.gov/ncbddd/au-tism/data.html.
• Corbin, J., & Strauss, A. (2007). Basics of qualitative research: Techniques andprocedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: SAGE.
• Gotham, K., Unruh, K., & Lord, C. (2015). Depression and its measurement in verbal adolescents and adults with autism spectrum disorder. Autism, 19, 491-504. doi:10.1177/136236131453662
• Husky, M. M., Sheridan, M., McGuire, L., & Olfson, M. (2011). Mental health screening and follow-up care in public high schools Journal of the American Academy of Child andAdolescent Psychiatry, 50(9), 881-891.
• Husserl, E (1970). Tran. D Carr. Logical investigations. New York: Humanities Press.
• Kids Count Data Center (2015). Retrieved from http://datacenter.kidscount.org/data/ tables/106-children-in-single-parent-families#detailed/1/any/false/573,869,36,868,867/any/429,430.
• Lee, S., Simpson, R., & Shogren, K. (2007) Effects and implications of self-management for students
with autism: a meta-analysis Focus on Autism and Other Developmental Disorders, 22, 2-13.
• Lugnegard, T, Hallerback, M.U., & GillbergC. (2011). Psychiatric comorbidity in young adults with a clinical diagnosis ofasperger syndrome. Research in Developmental Disabilities, 32, 1910-1917.
• Matson, J., & Williams, L. (2014). Depression and mood disorders among persons with autism spectrum disorders. Research in Developmental Disabilities, 35, 2003-2007.
• Mattila, M.L., Hurtig, T, Haapsamo, H., Jussila, K., Kuusikko-Gauffin, S., Kielinen, M.,.. .Moilanen, I. (2010). Comorbid psychiatric disorders associated with asperger syndrome/high-functioning autism: A community-and clinic-based study. Journal of Autism and Developmental Disorders 40, 1080-1093. doi:10.1007/s10803-010-0958-2
• Mayes, S., Calhoun, S., Murray, M., & Zahid, J. (2011). Variables associated with anxiety and depression in children with anxiety and depression in children with autism. Journal of Developmental & Physical Disabilities, 23, 325-337. doi:10.1007/s10882-011-9231-7
• McPheeters, M., Davis, A., Navarre, J., & Scott, T. (2011). Family reports of asd concomitant with depression or anxiety among U.S. children. Journal of Autism & Developmental Disorders, 41, 646-653. doi:10.1007/s10803-010-1085-9
• Merleau-Ponty, M. (1962, 2006). Phenomenology of perception. New York, NY: Routledge.
• Russell, A., Jassi, A., Fullana, M., Mack, H., Johnston, K., Heyman, I.,...Mataix-Cols, D.
• (2013). Cognitive behavior therapy for comorbid obsessive-compulsive disorder in high-functioning ASD: A randomized controlled trial. Depression & Anxiety, 30, 697-708. doi:10.1002/da.22053
• Sterling, L., Dawson, G., Estes, A., & Greenson, J. (2008). Characteristics associated with presence of depressive symptoms in adults with ASD. Journal of Autism & DevelopmentalDisorders, 38, 1011-1018. doi:10.1007/s10803-007-0477-y
• Strang, J., Kenworthy, L., Daniolos, P., Case, L., Wills, M., Martin, A., & Wallace, G. (2012). Depression and anxiety symptoms in children and adolescents with autism spectrum disorders without intellectual disability. Research in Autism Spectrum Disorders, 6, 406-412.
• U.S. Census (2015). Population estimates. Retrieved from http://www.census.gov/.
• Van Manen, M. (2014). Phenomenology of practice: Meaning-giving methods inphenomenological research and writing. Walnut Creek, CA: Left Coast Press.
• White, S., & Roberson-Nay, R (2009). Anxiety, social deficits, and loneliness in youth with autism
• spectrum disorders, Journal of Autism and Developmental Disorders, 39, 1006-1013.
