Autism is one of a group of neurological disorders comprising autism spectrum disorders (ASD), affecting language, communication, and social relationships. Diagnostic criteria currently in place in the United States include descriptions of qualitative impairments in social interaction and communication as well as restricted, repetitive, and stereotyped patterns of behavior, interests, and activities through observable behaviors (American Psychiatric Association [APA], 2000). Autism is a lifelong condition that typically emerges before 3 years of age and is often comorbid with serious mental health challenges. Autism and Asperger syndrome (AS; a lesser form of autism) are linked with an increased occurrence of mental health disorders; the most commonly reported are depression and anxiety (Howlin, 1997). The quality and outward manifestation of symptoms of autism and AS change with maturation (Ozonoff, Goodlin-Jones, & Solomon, 2010).
Symptoms of autism are often most distinctive at very young ages and may improve over time or manifest differently with maturation. Children who make little to no reciprocal social interactions, for example, may display different symptoms when they are adolescents or adults. The younger child's apparent indifference to others may be reinterpreted as social issues in the form of awkwardness or age inappropriate behavior at adolescence and young adulthood. As children mature they often develop more interest in social interactions with others and their social skills needs become more noticeable. Difficulty establishing and maintaining social relationships is a factor strongly linked to mood disorders; both conditions are often associated with individuals on the autism spectrum. The category of autism does not preclude the possibility that mood disorders, such as depression and anxiety, can coexist (Ghaziuddin, Ghaziuddin, & Greden, 2002). Identified mood disorders in individuals with ASD are higher than the incidence for their typical peers (Ketelaars et al., 2008; Rosbrook & Whittingham, 2010).
Two of the most prevalent mood disorders, depression and anxiety, are relatively long-lasting underlying emotional states that are not likely to be linked to a particular event but are more similar to a style of processing information (Thayer, 1998). Mood disorders can exist as separate diagnostic categories; that is, they are distinctive from other types of mental health issues. Moods affect how individuals respond to daily life. A positive or good mood appears to allow individuals to be creative and open to new ideas and to develop personal relationships. A poor or negative mood, in contrast, often results in depression, anxiety, aggression, poor self-esteem, physiological stress, and high or low sexual arousal. Limited but growing research is targeting the identification and needs of youth and young adults with autism disorders comorbid with depression and anxiety.
Depression, anxiety, and other mental health disorders appear to be commonly overlooked conditions comorbid with autism (Kim, Szatmari, Bryson, Streiner, & Wilson, 2000). Higher functioning individuals with autism have been found to have depressive disorders at rates ranging from 30% to as high as 37% (Ghaziuddin et al., 1998; Wing, 1981). Anxiety and depression are mood disorders involving a pronounced change in a person's emotional state. Depression and anxiety are characterized by desolation and euphoria, respectively. Symptoms vary, but they usually involve abnormal happiness or sadness which affects daily functioning to some degree.
An estimated 20 million American adults live with a chronic anxiety disorder (Cancro, 2007), but, of those 20 million, the number who also are classified as autistic or depressed is confounded by overlapping similarities in behavior and inadequate or overly simplistic record keeping, recording only the dominant condition. Anxiety disorders, which usually occur before the age of 40, are common during depression and often found comorbid with ASD. The stresses associated with living with ASD can easily be seen to lead to the development of anxiety or depressive disorders.
Depression is one of the most common coexisting mood disorders seen in individuals with ASD and has been described by higher functioning individuals whose language skills are sufficient to enable them to describe insights to their feelings (Lainhart & Folstein, 1994). Percentages of individuals with depression may actually underrepresent the true figure. A review of 17 published cases suggests that depression is often missed in individuals with autism (Lainhart & Folstein, 1994). Explanations for such high rates of comorbid anxiety or depressive behaviors with ASD remain speculative, but quality of life clearly is put at risk by coexisting mental health conditions (Leyfer et al., 2006; Sterling, Dawson, Estes, & Greenson, 2008).
ESTIMATED PREVALENCE OF DEPRESSION AND ANXIETY
Just as many individuals with autism form attachments to caregivers, multiple reasons suggest that people with autism also are capable of feelings of depression and anxiety. Estimates of anxiety for children and adolescents with ASD range from 11-84%, with the majority of studies reporting a range of 40-45 % (White, Oswald, Ollendick, & Scahill, 2009). In general, individuals who are higher functioning may experience depression or anxiety partially from awareness of their own behavioral and emotional challenges (Attwood, 2008; Sterling et al., 2008). As much as 70% of young adults with AS, a mild form of autism, are reported to have had at least one previous episode of depression and up to 50% have had repeated episodes (Lugnegard, Hallerback, & Gillberg, 2011).
Evidence is mounting that many individuals with autism experience higher rates of mental health issues than previously thought. Individuals with autism have feelings that, given issues with communication and social interaction, may not be expressed in the same way as those without autism. Difficulty expressing feelings or atypical expression of feelings often leads to rejection and indifference from peers or caregivers, which in turn may create anxiety and depression. Children with depression may not have the maturity or language skills to recognize their condition. Because of delays in communication systems or poor introspection, depressed adolescents and young adults may find difficulty articulating or understanding feelings beyond being sad or losing interest in favorite subjects or activities. The autistic condition, in turn, may mask mental health concerns or diminish the effectiveness of treatment. In some cases, interventions may target the three core areas of autism--that is, social skills, language, and stereotypic or repetitive behaviors--and minimize depression and anxiety or attribute them as a function of maladaptive behaviors associated with the autistic condition. In general terms, without intervention, depressed individuals usually display variations in degree of symptoms over time, that is, the depression may not be continuous, whereas anxiety disorders are unremitting. A commonly held assumption is that interventions that address the three core areas successfully will eliminate or lessen the involvement of anxiety or depression.
Clinical experience suggests that the rate of depression in autism and related disorders rises with age, suggesting that some of the behavioral decline that occurs in adolescents with autism may be related to the surfacing of depressive symptoms (Ghaziuddin, Weidmer-Mikhail, & Ghaziuddin, 1998). Mood disorders, like anxiety and depression, that may have been present in childhood become more apparent as individuals move from adolescence into adulthood (Bradley, Summers, Wood, & Bryson, 2004; Brereton, Tonge, & Einreid, 2006). As demonstrated by follow-up studies of children with autism, deterioration of behavior appears to occur in about half to one third of the children during puberty with no currently known reason (Gillberg & Steffenburg, 1987; Kobayashi, Murata, & Yashinaga, 1992). Excessive fearfulness, shyness, anxiety, undue emotional reactions, and frequent mood changes of the child with autism may be reinterpreted as detachment or depression in adolescents or young adults (Rapin, 1997). Irritable moods may be attributed to the condition of autism in children and adolescents when in actuality they may be overlooked signs of depression or anxiety.
CONFOUNDING TRAITS WITH MOOD DISORDERS AND AUTISM SPECTRUM DISORDERS
Understanding how depression and anxiety are manifested in individuals with autism disorders is difficult because symptoms of these mood disorders as well as the condition of autism may vary from one individual to another, or the symptoms of mood disorders may be overshadowed by characteristics associated with autism, such as neutral facial affect, social withdrawal, or self-injurious behavior (Hedley & Young, 2006). Adolescents with recurring feelings of sadness or other symptoms of depression who do not show obvious clinical signs of the condition are very likely to experience major depression as adults (Pine, Cohen, Cohn, & Brook, 1999).
Although children with autism can and do experience depression, the condition can be unnoticed or not considered as important to address as basic skills or stereotypical behaviors. When children are very young, the focus of education is acquisition of language and communication skills with an emphasis on basic academic knowledge. As the child enters adolescence and young adulthood, instructional attention begins to shift away from how basic core skills affect academic achievement toward development of more complex social interactions and life skills. Adolescents and young adults are faced with greater inter- and intrapersonal challenges as communication and language differences from peers become increasingly obvious (White & Roberson-Nay, 2009).
The transitions from childhood to adolescence to adulthood may be particularly stressful for individuals with autism. The needs of young adults shift at the time when services and supports found in schools are no longer available. Very few services are available for individuals with autism beyond 22 years of age. For individuals with lesser degrees of autism, the situation is grim in that almost no services exist.
Although mental health services are available for adults with mood disorders, these services often do not take into account the interactive effects of depression, anxiety, and an autistic condition. Although autism, depression, and anxiety are commonly found together, many mental health service providers have not had sufficient educational opportunities to address the multiple needs of individuals who present with this triad of conditions. Most often only the condition that is most problematic is addressed by care providers.
CATEGORIZATION OF DEPRESSIVE DISORDERS
Depression, much like autism, does not have a unitary definition. Nine officially recognized types of depression with specific criteria have been identified (APA, 2000). Despite their differences, all include depressed mood, loss of interest, and sleep disturbance as well as interference with daily living in inter- and intrapersonal situations, such as school, social gatherings, or work settings. During depressive episodes, all forms impact to a greater or lesser degree the ability to experience a pleasant and satisfactory life, especially involving interactions with others. Diminished self-worth is a natural consequence of depression for many individuals with or without autism. Major differences include the degree and duration of the depression. Symptoms of depression are not directly linked to substance abuse or medication side effects or to a medical condition. Detailed descriptions of the criteria for the nine types of depression can be found in the DSM-IV-R (APA, 2000).
According to the Diagnostic and Statistical Manual of Mental Disorders (4th rev. ed.; DSM-IV-R) classification system (APA, 2000), major depressive episodes must include either a depressed mood or loss of interest or pleasure and include at least five symptoms on an almost daily basis for a minimum of 2 weeks. A major depressive episode can occur once or, if more than once, must be separated by at least 2 consecutive months. These symptoms must interfere significantly with social, work, or other important areas of daily living and must not be the immediate result of substance abuse or an identified medical condition.
Depressive disorders can be categorized broadly into bipolar disorder (BD) and major depressive disorder (MDD). BD, formerly known as manic depression, is usually associated with interspersed depressive and manic episodes. MDD, commonly referred to a major depression or clinical depression, has been extensively researched. MDD can occur once or can reoccur and can be characterized by significant, continual depression with a loss of interest in normal aspects of daily life or formerly pleasurable activities, poor appetite, unexplained physical issues, chronic fatigue, and sleep disorders. Depression can run the gamut of mild involvement without obviously affecting daily life to MDD, which is incapacitating.
Individuals with autism with or without MDD often feel emotionally distant. Some youth and young adults with autism who suffer with severe depression may complain of being emotionally cut off from others and experience great emotional pain in not being able to develop or maintain personal relationships. For other individuals with autism, depression may be characterized as an inability to complete simple chores or as problems concentrating, for example, on reading a book or watching a movie. Separating the social and communication issues of individuals with autism from those symptoms related to depression is complicated and has implications for intervention. Verbally sophisticated individuals with ASD may express feelings of disorientation, confusion, and lack of direction. These feelings can lead to inertia, and, without intervention, behaviors are likely to continue in a downward spiral.
The International Statistical Classification of Diseases and Related Health Problems, 10th edition (ICD-IO; World Health Organization, 1992) is the most widely used disease classification system in the world. In the United States, the DMS-IV-R (APA, 2000) is the standard classification of mental disorders used by mental health professionals. These two diagnostic classifications are not totally aligned in terms of criteria for depression, although they do have many similar categorization labels (Bertelsen, 2004). Both approaches to classification of depressive disorders require basic depressed mood or loss of interest or pleasure. Both systems provide categorization for depressive disorders that are similar in eight descriptors: depressed mood, loss of interest, decrease in energy or increased fatigue, sleep disturbance, appetite disturbance, recurrent thoughts of death, inability to concentrate or indecisiveness, and psychomotor agitation or retardation. These two classification approaches neither address biochemical processes fundamental to the condition nor consider responses to treatment or outcome as factors. The two approaches differ in that the ICD-IO has two additional items: reduced self-esteem or self-confidence and ideas of guilt and unworthiness. Unlike the ICD-10, the DSM-IV-R puts excessive guilt and feelings of worthlessness together, although these feelings go well beyond the norm for loss of self-confidence or self-esteem (Gruenberg, Goldstein, & Pincus, 2005).
Anxiety refers to uncontrollable or difficult to manage feelings of uneasiness or worry, usually about an imminent event in which the outcome is uncertain. Beginning as early as toddlerhood, anxiety appears to increase across the lifespan among individuals with ASD (Davis et al., 2011). Anxiety disorders can be excessive and unreasonable, and they manifest in multiple ways, such as, panic attacks or agoraphobia, the fear of wide-open spaces and uncontrollable social situations, as well as excessive compulsions involving thoughts or actions. Anxiety is typically long lasting and can be directed at specific situations, such as flying in an airplane, or it can be free floating, as a uneasy state of mind with no known trigger. Anxiety disorders have been recognized by DSM-IV-R (APA, 2000) and include at least three of the following symptoms occurring for a minimum of 6 months:
* Restlessness, feeling keyed up or on edge
* Being easily fatigued
* Difficulty concentrating or mind going blank
* Muscle tension
* Sleep disturbance
The most commonly identified form of anxiety is generalized anxiety disorder (GAD), which affects more than 4 million adults and is often linked to depression. An adult with GAD is an excessive worrier and will perseverate on a problem all day and often into the night. The excessive worrying interferes with sleep and, in extreme cases, can be incapacitating. Other forms of anxiety disorders include panic disorder, posttraumatic stress disorder (PTSD), obsessive compulsive disorders, specific phobias, and social phobias (Cancro, 2007).
Panic disorders are short term, typically no more that 10-15 minutes, and present similar symptoms as a heart attack. Posttraumatic stress disorder is a form of anxiety based on fear and helplessness related to a real death or serious experience. This experience mentally plays repeatedly and intrusively creates the same sense of helplessness and fear as the original situation. Found in more than 3 million adults, OCD is similar to PSTD in that the person has persistent disturbing and uncontrollable thoughts. Many individuals with OCD find relief from their anxiety by performing certain motor rituals, for example, compulsively opening and closing a door several times before walking through. Specific phobias include unwarranted and severe anxiety related to particular events, objects, or places. They may include, for example, irrational and overexaggerated fear of insects or sudden loud and unexpected sounds.
Obsessions refer to persistent and atypical impulses, desires, images, or ideas that dominate feelings or behaviors. Morbid fears are those which focus on death or unpleasant events with thoughts of suicide commonly reported. Social phobias are similar to specific phobias but address social interaction. Social phobias, affecting more than 3 million adults, involve intense anxiety in daily social situations, which includes feeling an atypical degree of self-consciousness coupled with the firm conviction that others will find one's actions inappropriate and unacceptable.
Although anxiety disorders are in and of themselves separate categories, during a depressive episode, the reciprocity of anxiety and depression raises the questions of whether the anxiety raises depression or depression raises the level of anxiety. In any event, anxiety plus depression can be difficult for those individuals with autism who lack insight into their feelings, have a restricted ability to communicate insights of which they are cognizant, or both. Many individuals with autism display behaviors that overlap with or are identical to symptoms of anxiety. Identification of the primary disorder focuses on lessening of symptoms for that disorder, but not necessarily for other comorbid behaviors. All the characteristics associated with depression and anxiety have been reported for children, adolescents, and adults with autism, but they are not always considered as separate and treatable conditions.
Based on analysis of retrospective studies, more than half of adults with anxiety or mood disorders have had a history of a childhood anxiety disorder (Kessler et al., 1994). Anxiety disorders in childhood are predictors of adult anxiety disorders and depression as well as possible substance use problems, suicide attempts, and hospitalization (Kendell, Safford, Flannery-Schroeder, & Webb, 2004).
SOCIAL ADJUSTMENTS AND CHALLENGES
Mood disorders like anxiety and depression affect not only the person's overall feelings of worth but also affect the quality of interactions with others. Individuals who are overly anxious and depressed typically do not interact a lot with others, or, when they do interact, the relationships can often be strained or limited in exchange.
Social Anxiety Disorder
The most common anxiety disorder found with adolescents and adults with high functioning autism disorder (HFA) is social anxiety disorder (SAD), which is synonymous with social phobia (Bellini, 2004; Kuusikko et al., 2008;). SAD manifests as unreasonable and excessive fear of social situations, in which individuals are convinced that others are watching or judging their behavior negatively. As a result, individuals with SAD tend to avoid social situations, which in turn creates less opportunity to learn how to develop appropriate social skills. Distorted thinking can be directed at an immediate event or an anticipated situation. This form of anxiety creates fear of social situations and can lead to panic attacks, even though the event may be weeks in coming or may never occur at all.
The relationship between SAD and some high functioning individuals with ASD (HFA) or AS may be reciprocal. Empirical evidence is beginning to suggest that ASD and SAD can co-occur, even to the point of identifying a probable causal genetic link between the two disorders. First-degree relatives of autistic show higher than expected frequencies of SAD (Piven & Palmer, 1999). Neuroimaging and behavioral data have found higher rates of abnormal amygdala structure and function. These abnormalities may explain higher rates of anxiety and fear associated with ASD (Amaral, Bauman, & Schumann, 2003). Although results from behavioral, anatomical, and functional neuroimaging research connect abnormal structure and function of the amygdala in various areas of social development, results are inconsistent (South et al., 2008).
Individuals with social anxiety often experience extreme distress dealing with social situations, but in isolation such social difficulties do not appear to be as severe as those social situations typical of individuals with ASD. In other words, the SAD is compounded by comorbidity with ASD. Additionally individuals with SAD appear able to understand the perspective of others, whereas many individuals on the autism spectrum exhibit deficits in the awareness of the point of view of others (White, Bray, & Ollendick, 2011). The combination of SAD and ASD may be additive when considering the effect of depression.
Many individuals with ASD are aware of differences between them and their typical counterparts. Due to difficulty integrating with typical individuals, SAD may become more intense as individuals move from childhood to adolescence and young adulthood. Self-concept is determined in part by positive and negative experiences with others. Many individuals with ASD have had experiences related to rejection, bullying, and shunning (Kaltiala-Heino, 2010; Kim et al., 2000). Many children with ASDs receive services in inclusion settings, either in the classroom or other areas like the playground or cafeteria. Negative reactions from others in the environment can result in frustration, poor self-esteem, and apprehension of others. Ironically, as some individuals with ASD become more self-aware, they begin to recognize that others are not responding to them. They may become disturbed by their condition as they become older because they have accumulated a history of negative social treatment (Goldiamond, 2002).
Due to socio-communicative and behavioral challenges, children and adolescents with ASD are at risk for peer victimization, that is, in common parlance, bullying (Cappadocia, Weiss, & Pepler, 2012). Results of preliminary studies have found that children with ASD were bullied 54 times more often than their chronological peers (Little, 2002). Reports have suggested that well over half of children and youth with ASD have been bullied for extended periods (Carter, 2009; Wainscot, Naylor, Sutcliffe, Tantam, & Williams, 2008).
The cumulative effect of negative experiences on some individuals with autism may far exceed the effect of positive experiences with peers and others with whom they have had direct contact. Because of social and communication issues, many children and youth with ASD are marginalized in school settings, making few if any friends. A lack of friendships translates to missing the benefits of a group of protective and supportive peers. Atypical and obsessive interests coupled with extreme emotional and/or behavioral reactions to victimization make individuals with autism targets for aggressive peers (Gray, 2004).
Bullying is most prevalent in the middle school years and during the transition to high school (Pepler, 2006; Williams & Guerra, 2007). Bullying most often is in the form of verbal or social mistreatment and appears to occur across all degrees of involvement with ASD, including AS and HFA (Bauminger & Kasari 2000; Cappadocia et al., 2012; Orsmond, Krauss, & Seltzer, 2004). Individuals who are bullied often show an increase in the severity of their condition, develop mental health issues, or both (Fekkes, Pijpers, Fredriks, Vogels, & Verloove-Vanhorick, 2006).
Victimization or bullying of individuals with autism can also occur in the world of the adult, especially in the workplace. Although most individuals experience victimization at one time or another, if the behaviors are consistent and evolve into a pattern, mental health can be affected. Some examples of bullying that occur with adults are repeatedly being
* excluded from work-related social events,
* shunned either directly or indirectly by failure to respond to questions or requests,
* provided with rude or disrespectful comments in isolation or in front of others,
* refused requested assistance or clarification by coworkers,
* given cruel or negative comments about intelligence or competence,
* ignored for contributions or products, and
* targeted for mean pranks.
The buildup of stress experienced in workplace bullying can lead to anxiety and depression, with the ultimate conclusion of losing a job or leaving the workforce altogether.
As individuals with autism age, negative and positive personal experiences with others accumulate. As suggested by the literature, the mental health scales for many individuals with autism are more likely to be tipped with negative experiences. The stresses of bullying impact self-concept negatively, and these two factors are strongly related to mental health problems (Nansel et al., 2004). Bullied and rejected children typically experience heightened feelings of anxiety and depression, which can have additive effects when combined with rejection by peers (Prinstein & Aikins, 2004; Ladd, 2006).
Children and adolescents who display fewer ASD symptoms appear to be predisposed to demonstrate more anxiety than would be the case for more severely involved individuals. In the case of depression and anxiety, stronger cognitive and social cognitive abilities may serve as a liability for individuals with ASD (Mazurek & Kanne, 2010). In addition, the less involved the condition of autism, for example, with individuals with AS or HFA, the more awareness of differences and social difficulties is likely to occur. This awareness in turn can contribute to negative self-esteem and an expectation of rejection in social settings.
Like most adolescents, those with HFA place a great deal of importance on peer approval, but, unlike their counterparts, they report little positive feedback or peer approval (Williamson, Craig, & Slinger, 2008). Many adolescents with HFA and normal or higher intelligence have reported fear of negative reactions or judgments of peers due to a greater social motivation, social awareness, and insight than exhibited by those individuals who are more involved on the spectrum (Klin, McPartland, & Volkmar, 2005). Some individuals with AS, for example, appear to cope by isolating from others through involvement in a personal and idiosyncratic world of special routines and private or idiosyncratic interests. This type of survival technique typically excludes close friendships, including sexual relationships, and often results in very little planning for the future with an apparent reluctance to accept the responsibilities of an adult (Tatum, 2000).
As a general rule, many adolescents and adults with ASDs can be viewed as socially inept. Adolescents and adults with social phobia may display serious deficits in nonverbal communication, gaze aversion, and lack of or minimal emotional expression, but not in every social situation. The more familiarity the individual has with the situation and individuals, the less the impact of anxiety on social interaction (Tatum, 2000).
Dysthymia and Social Adjustment
The probability that many HFA or individuals with AS function without diagnosis in the general community is very high. Many individuals, including those with autism, are affected by dysthymic disorder. This chronic condition can be described as uncomplicated low-grade depression existing for 2 or more years for adults and 1 year for adolescents and children, which is not due to any direct physiological effects of alcohol, drugs, or medications or a general medical condition like cancer or a stroke. The symptoms must also cause significant distress in work, school, or social functioning. Individuals with dysthymic disorder are less likely to work full time and more likely to experience social difficulties as a result of emotional and physical problems than are individuals with severe depression (Hellerstein, Agosti, Bosi, & Black, 2010). Onset of most cases of dysthmia can be traced to late childhood or the early teens.
In children and adolescents, dysthmia takes the form of an irritable mood, poor academic performance, pessimism, and a lack of social skills (Duggal, Carlson, Sroufe, & Egeland, 2001). Adults appear gloomy and hopeless, often engaging in excessive anger and self-criticism. Over- or undereating and poor sleeping habits contribute to the lack of energy or fatigue often associated with this condition. In some instances, adults have trouble concentrating or making decisions, which can affect work productivity. In other instances, work productivity increases, but almost to the exclusion of other activities.
For some adults who experience autism and dysthmia, work becomes an escape from social situations by which they overcompensate and which they use as a socially acceptable means of counteracting depressive disorganization, inertia, and aversion to social situations (Akiskal, 2009). Energy is invested in work, leaving little to no time for leisure, family, or social activities, including developing or maintaining a marriage. Increasing numbers of adults, very often middle-aged men, are referring themselves for counseling based on interpersonal issues they have experienced, for example, self-recognition of egocentricity, lack of empathy, and lack of interest in others (Tantam, 2004). For those young adults with dysthmia plus ASD and no real work option, reality may be steeped in isolation and loneliness, with many finding their world increasingly limited to their home. Some individuals with autism are capable of questioning their quality of life (Cramer, Torgersen, & Kringlen, 2010). Dysthymic disorder is often associated with elevated risks of suicidal outcomes (Gureje, 2011).
SUICIDE AND ATTEMPTED SUICIDE
ASD and comorbid conditions of depression and anxiety are linked to high suicide risk. The accumulation of negative life events and accompanying psychosocial issues associated with depression and anxiety comorbid with autism and AS without intervention increases the risk of suicide or attempted suicide. Suicidal thoughts appear to be most intense and most common in adolescence and young adulthood (Gillberg, 2002). Although little research exists, suicidal behavior seems to be more common in high functioning adults and those with AS then is generally documented (Ghaziuddin, 2005). Suicide is often found in individuals with a chronic history of depression for whom antidepressants have only been somewhat successful.
For adults with autism who are also receiving services for comorbid psychiatric conditions, initial data suggest that for every completed suicide, 50 to 120 suicide attempts are likely (Raja, Azzoni, & Frustaci, 2011). Suicide risk for individuals with ASD, depression, and anxiety is easily masked by impaired social interactions and communication. Often adults with ASDs receiving psychiatric services are dually diagnosed either very late in treatment or misdiagnosed altogether (Dossetor, 2007). Misdiagnosis and inappropriate behavior coupled with limited vocabulary or ability to understand personal feelings can disguise underlying suicidal intention. The diagnosis and treatment of ASDs in adults has just begun to gain attention. Psychiatrists and mental health workers in search of information will find such knowledge held by relatively few professionals (Engstrom, Ekstrom, & Emilsson, 2003).
Language and SAD
Language issues associated with most individuals with autism can also contribute to SAD and related social skill issues. Individuals with autism usually experiences delays in verbal expressions as well as difficulty in expressive conversation and language. Many individuals with autism have limited or no ability to interpret pragmatic language, such as interpreting the semantic meaning of facial expressions or tone of voice. Very often restricted, repetitive, and stereotyped ritualistic behavioral (RRBs) are lifelong. RRBs range from very primitive repetitive body movements to extremely complicated obsessive interests, such as discussing detailed weather patterns or encyclopedic knowledge of a historical period. RRBs can include, but are not limited to, destructive behaviors associated with aggression toward self, others, or property as well as elopements (flight) (McCoy & Bornett, in press). Individuals with excessive interests typically do not exchange ideas with others or converse about topics outside the range of a personal interest. Communications, if they occur, are often more like minilectures, with the individual with autism dominating but not recognizing the effect of conversational control on others. Reciprocity expected in conversational exchange of ideas either does not exist or is very limited. Social relationships suffer when the obsessive interest does not align with the interests of others or excludes the possibility of mutual interaction.
For many individuals with language challenges, interacting with others is neither motivational nor interesting. Interaction under some circumstances requires a great deal of effort and energy, even for individuals who have intact language expression. Some individuals with autism appear to process auditory information at a slower rate than would be expected. This slowed rate of processing makes others' verbally expressed language difficult to understand. Ideas are lost or only partially captured, making conversation difficult to follow. For individuals who are often misunderstood or who have difficulty following the rapid delivery of language, social interactions can be excruciating and frustrating. Both the individual with autism and potential conversation partners will likely grow to avoid these interactions, relieving both of them of the stresses of incomplete communication but leading to social isolation.
Depression and anxiety can also affect communication. Depression has long been associated with inability to speak in normal, fluent tones and rhythms and with poor concentration. Depressed individuals may have trouble putting thoughts into words and speak or move very slowly. Depression often results in difficulty concentrating, diminished thinking skills, or problems making decisions (Lukasik, 2009). Anxious individuals engage in a higher rate of negative thoughts than their typical counterparts, even though they have the same frequency of positive thoughts (Sood & Kendall, 2007). In rare instances, anxious individuals may engage in selective mutism (SM); that is, in spite of having normal or almost normal expressive language, the fear of talking with certain people or in certain situations results in no verbal exchanges. SM also co-occurs with various specific anxiety disorders such as social phobia, separation anxiety, and PTSD (Steinhausen, Wachter, Laimbock, & Winkler Metzke, 2007). Separating the effects of autism, depression, and anxiety can be confounded because the traits often mimic one another.
PHYSICAL HEALTH ISSUES AND PSYCHOLOGICAL DISTRESS
Chronic physical illness tends to create psychological distress. Poor physical health brings an increased risk of depression, as do the social and relationship problems often found among the chronically ill. Although chronic illnesses cause rates of depression almost three times higher than would be expected, depression can also precede some forms of chronic physical illnesses (Goldberg, 2010).
For many individuals with autism, adolescence is a period of increased risk for developing chronic health problems (Kring, Greenberg, & Seltzer, 2010). Numerous studies have reported a markedly higher rate of physical health problems for children with ASD than for typically developing children (Filipek, 2005; Gurney, McPheeters, & Davis, 2006; Volkmar & Wiesner, 2004). Seizure activity, for example, is almost 25% higher for individuals with ASD than for the general population (Danielsson, Gillberg, Billstedt, Gillberg, & Olsson, 2005). Although seizures can occur in infancy, they frequently develop around the beginning of puberty (Billstedt, Gillberg, & Gillberg, 2005; Fombonne, 2003).
Many individuals with ASD are reported to have a high frequency of stomach, esophagus, small intestine, colon, and liver abnormalities (Horvath & Perman, 2002). Many gastrointestinal (GI) problems in individuals with ASD, such as constipation and diarrhea, also first begin during adolescence (Molloy & Manning-Courtney, 2003; Valicenti-McDermott et al., 2006). Although there is recognition that physical health is often compromised in adults and adolescents with ASD, little attention has been drawn to the interaction effects of physical illness, depression, anxiety, and autism.
Impairments in social interaction and communication characteristics of many individuals with autism complicate issues related to physical health problems. Limited ability to clearly explain symptoms such as fatigue or pain can lead to inappropriate behavioral responses (Carr & Owen-DeSchryver, 2007; Volkmar & Wiesner, 2004). When these inappropriate social responses are overt and challenging, much like the proverbial squeaky wheel, they are addressed. In contrast, when nonthreatening, inappropriate behavior can be overlooked or attributed to physical illness. In cases of depression and physical health problems, for example, the physical condition can mask or mimic depressive symptoms, leaving the mental health issue and related ASD unaddressed.
As the individual ages, unexplained physical health issues emerge. For those who have had long-term antipsychotic drugs such as dopamine, a chronic disorder known as tardive dyskinesia may develop, resulting in involuntary jerky movements of the face, tongue, limbs, and trunk (Welter, Grabli, & Vidailhet, 2010). Behaviors associated with tardive dyskinesia are off-putting when developing social relationships, and treatment may stop at dealing with the physical manifestations without regard for underlying depression. Depression among those with chronic physical illnesses is liable to be missed by professionals who care for physically sick patients because health professionals are concerned with the physical disorder and may not be attentive to the possibility of an accompanying depression (Goldberg, 2010).
Individuals with depression and anxiety not only have poorer physical health than mentally healthy people but also have worse self-perceived health. Physical health conditions, real or perceived, in combination with depression can have separate, cumulative, or additive effects on physical and mental health. The combination of irritable bowel syndrome and depression, for example, can affect social interaction more deeply than either condition separately. Given that many adolescents and young adults with ASD are characterized as having communication or social skills challenges, depression and physical illness in combination with ASD pose a triple threat to positive mental health. Mental health workers are aware of the fact that physical health is often compromised in adolescents and adults with ASD (Barnhill, 2007), but few studies have explored the association between behavioral functioning and the physical health of adolescents and young adults with autism, nor have studies attempted to address physical health problems in treatment procedures (Horvath & Perman, 2002; Volkmar & Wiesner, 2004).
Sleep impairment can be caused by many factors, and the number of factors is further complicated when the problem occurs in individuals with ASD. Some, but not all, physical factors associated with ASD that can contribute to sleep disorders include epilepsy, gastrointestinal disorders, and sleep apnea. Psychiatric comorbidities such as anxiety/depression, attention-deficit/hyperactivity disorder (ADHD), and obsessive/repetitive behavior often associated with ASDs contribute to sleep impairments (Reynolds & Malow, 2011).
Individuals with ASD can also perseverate on an activity or thought, which can interfere with settling for sleep. Sorting out the cause of sleep disorders in individuals with ASD is difficult because multiple issues occurring simultaneously can contribute to the disorder. Many studies have reported the effect of physical problems on sleep with children with ASDs; information about adolescents and adults is sparse.
Physical problems, especially those associated with gastrointestinal disorders, have often been found to be associated with sleep disorders in infants and children with autism (Ghaem et al., 1998; Horvath, & Perman, 2002). Children with ASD and GI symptoms have almost three times as many sleep disturbances as children without ASD and GI symptoms. Insomnia or the inability to sleep is commonly reported for children and adults with ASD as well as teeth grinding during sleep, sleepiness during the day, and disordered breathing. Limited hours of sleep and sporadic sleep and wakefulness have been reported for more than 50% of children with autism; falling asleep, frequent awakening, and early morning waking are characteristics of sleep disorders for children with autism. (Clements, Wing, & Dunn, 1986; Yakase, Taira, & Sasaki, 1998; Williams, Sears, & Allard, 2004). Good sleepers with ASD showed fewer affective problems and better social interactions than poor sleepers with ASD, however, causation between sleep and daytime functioning for individuals with ASD has not yet been determined. The relationship between the severity of the ASD and poor sleep with impaired daytime functioning is not yet established (Malow, McGrew, Harvey, Henderson, & Stone, 2006).
Another area of investigation related to sleep disturbance and autism is associated with circadian rhythm functioning, that is, physical, mental, and behavioral changes that follow about a 24-hour cycle, responding primarily to light and darkness in the environment. Atypical circadian rhythms have been associated with insomnia and disrupted sleep-wake cycles. Abnormal circadian rhythms have also been linked to depression and bipolar disorder. Preliminary results suggest that more sleep problems show up in younger children with ASDs than older ones. Sleep disorders based on the circadian function may represent a developmental process for individuals with ASDs that ultimately is outgrown by adolescence or adulthood (Hare, Jones, & Evershed, 2006).
Most studies prior to the last 10 years have focused on children with autism aged 3-15 years, with plentiful documentation of high rates of reported sleep problems in children with ASDs (Wiggs & Stores, 2004). Sleep disorders and the focus of sleep-wake disturbances associated with ASDs have targeted children, leaving almost no information about sleep--wake problems in adults with ASDs. Little information has been reported about sleep disorders for older adolescents and young adults with ASDs, but limited information regarding adolescents and adults is suggestive that sleep disturbances continue beyond childhood and may be related to fear, anxiety, or social problems (Oyane, & Bjorvatin, 2005). Depression, anxiety disorders, and ASDs have been associated with sleep problems (Alfano, Ginsburg, & Kingery, 2007; Liu et al., 2007; Liu, Hubbard, Fabes, & Adam, 2006).
As with any area of physical involvement, medical personnel who address individuals with sleep disorders must also take into account the association with other disorders and their possible interactions. Sleep disorders are known to be related closely to depression (Benca, Obermeyer, Thisted, & Gillin, 1992). Some sleep disturbances may occur prior to depression, although others may be present only during depression (Staner, Luthringer, & Le Bon, 2006). Recent research strongly suggests that anatomical-neurochemical systems control sleep and mood (Sculthorpe & Douglass, 2010). The role of neurochemical systems in sleep and depression is a promising area of research with potential impact for serving adults with depression comorbid with ASD.
Comorbid sleep disorders with learners already compromised with an ASD can have significant ramifications for healthy development. Documentation of the harmful effect of sleep deprivation on learning and behavior is well established (Stores & Wiggs, 2001). Identifying and providing effective treatment is essential to reduce distress for those with sleep disorders as well as to minimize or eliminate sleep disturbances.
Sleep Disorders and Anxiety
Sleep disorders and anxiety are interlinked. Anxiety, for example, interferes with the ability to go to sleep or to sustain sleep. In turn, the inability to sleep creates or contributes to persisting states of anxiety (Mellman, 2008). When anxiety reaches a level that interferes with typical functions, mental health issues must be addressed. Chronic sleep deprivation or insomnia has the potential for creating serious mental health issues. With a significant lack of sleep, the brain can become stimulated in areas associated with depression and anxiety. Medications associated with depression frequently are dispensed for sleep disorders and generalized anxiety (Mellman & Uhde, 1990; Reynolds & Malow, 2011).
PROBLEM SOLVING: ADDRESSING THE TRIPLE THREAT OF ASD, ANXIETY, AND DEPRESSION
Failure to diagnose a mood disorder and resultant lack of specific intervention can lead to serious and unexpected consequences for all individuals, but treatment is especially critical for people with autism. For many individuals with comorbid conditions of autism, depression, and anxiety, life becomes more and more dismal as they age out of school. Social groups and interpersonal interactions become more restricted, and many who attempt postsecondary education drop out. Employment is difficult to obtain and often more complicated to keep. Marriage for individuals with MDD and ASD may not be an option or may end in divorce. For some individuals with autism, anxiety, and depression, life can become unbearable and end with suicide (Fitzgerald, 2007).
Acknowledgment and Awareness
The first step in problem solving is to identify and acknowledge that a problem exists. Mental health personnel, teachers, and other service providers need to seek educational training that focuses on the possible interaction of one or more specialty areas. Given that autism, depression, and anxiety are commonly linked and difficult to separate through diagnostic means, mental health and other service providers must use problem solving skills for situations that may not have been previously considered. In order to suggest appropriate solutions to address the mental health issues in a timely manner, professionals who work with individuals with autism, depression, or anxiety must quickly and correctly identify the potential effect of the interaction of these three conditions. Problem-solving skills for mental health professionals go beyond superior knowledge of one or more of the three conditions to provide a climate that promotes efficient analysis of the interactions in order to quickly get to the source of the issue to design interventions.
As discussed earlier in this article, for individuals with autism, depression and anxiety are common comorbid conditions which appear to become more involved with age. In part mental health issues of individuals with autism in childhood often focused on the acquisition of language, appropriate comportment and academic skills to the exclusion or marginalization of mental health issues. Alternatively, each of the conditions can mask one or the other, resulting in only partial treatment or intervention, which is likely to address only the most dominant condition during the school years.
Accurate diagnosis and early treatment, typically medical or behavioral, are dependent upon expanding the knowledge base of physicians, psychiatrists, mental health professionals, and teachers or interventionists across the three areas of autism, depression, and anxiety as well as their potential interactions. Although no known cure exists for this mental health triad, interventions have been shown to be helpful in alleviating the confusion and suffering experienced by many individuals with these comorbid conditions. Adolescents and young adults are particularly vulnerable in that the support services required by law to be supplied by the school system are lessening or withdrawn altogether by age 22.
Separating autism from depression and anxiety is difficult, but where one condition exists, investigation of the possibility of the other two should be strongly considered. Education of mental health professionals as well as educators and interventionists is tantamount to identification of symptoms. Through treatment of symptoms, interactive aspects of this triad of conditions can be acknowledged and minimized. Given the overlapping nature of the three conditions, diagnosis may be more of a means for entry into appropriate services and provisions of strategies for inclusion in the home and community.
Vigilance in observing the behaviors of adolescents and young adults with autism for possible links to either depression or anxiety is especially critical during adolescence and young adulthood. Many significant changes occur during adolescence and young adulthood, including hormonal changes, role changes, and changes in expectations. Emerging from the sheltered life of school and home to increasing levels of independence can be simultaneously exciting and frightening, leading to a lot of stress and tension for adolescents and young adults.
These pivotal times are characterized by multiple transitions within the school setting and within the family. Transitions that are difficult for neurotypicals are even more so for individuals with autism. In addition to raising the sensitivity and awareness of comorbidity of depression and anxiety in individuals with autism, at least three powerful proactive influences need to be considered: the influence of family, medical intervention, and behavioral intervention.
Although adolescence and young adulthood is typically characterized as a time of confusion, turmoil in individuals with autism should be viewed with a careful eye for emerging signs of depression and anxiety that exceed the expected norm. The first line of observation must rest with the family. Factors related to the family unit can contribute or lessen the extent to which identification of and degree to which autism, depression, and adolescence interact. Adolescents with autism are influenced by and influence family dynamics.
All family members are part of the active changes occurring in the adolescent or young adult living at home. Adolescents and young adults typically seek individuation, and in this changing role both the adolescent and the family experience stresses. The reaction of the individual with autism to the reorganization of the family structure strongly influences various aspects of neurologically based behavior into adulthood (Baker, Seltzer, & Greenberg, 2011). The ability of the individual with autism to dealing with stresses and learn positive coPing skills is very much influenced by home parenting skills (Baker et al., 2010; Greenberg, Seltzer, Hong, & Orsmond, 2006).
Family adaptability appears to be particularly significant during adolescence (Baker, Seltzer, & Greenberg, 201 l). Rigidity in family functioning appears to create negative feelings in members of the family unit. Stresses can be reduced in families with adaptable and fluid responses to reorganization. Flexibility may strongly influence positive mental health and changes in neurologically based factors associated with adolescents and young adults with autism (McHale & Sullivan, 2008).
Families are not helpless in influencing the social and psychological well-being of their children with autism. Support groups as well as trained mental health professionals can assist families to provide the fluid and flexible type of reorganizational changes for their adolescent and young adult children within the family unit.
Family members can also be educated to identify characteristics of depression and anxiety, such as an increase in or emergence of maladaptive behaviors, especially those associated with aggression or self-injury. An increased lack of attention to self-care; expressions of negative feelings such as guilt, insignificance, and poor concentration; or comments related to suicide are additional warning signs that are more easily identified in the home than in clinical settings. Family unit training has the potential to proactively increase positive mental health, manipulate some aspects neurologically based behaviors associated with autism, and provide insight into the child's condition through reports of observations to mental health workers.
TREATMENTS AND INTERVENTIONS
An emerging body of empirical evidence supports the use of two empirically validated interventions for some of the behaviors associated with core features of autism: behavioral/psychoeducational interventions and explicit forms of medication treatment. Critical evaluation suggests that findings related to behavioral and medical interventions relative to core features of autism effectively address simple, but not complex, aspects of autism (Bodfish, 2004). Many of the pharmacological and behavioral treatments are the same as those used with depression and anxiety.
In a review of the literature, the few studies describing treatment of depression in autism found that the primary treatment used for depression and or anxiety for individuals with autism and AS was pharmacological. Pharmacological treatment appears to be effective in reducing some symptoms of depression and selected behavioral issues (Stewart, Barnard, Pearson, Hasan, & O'Brien, 2006).
Although some evidence exists support for the use of some types of pharmacological treatments for behavior problems associated with autism, to date little to no research has reported medications that have long-term effects on the core characteristics of autism. Improvements with medication have been seen in aggression, irritability, and anxiety, and in some cases in RRBs, but little to no progress in language or social development has been documented (see Bodfish, 2004 for an in-depth review.).
As adolescents and young adults with autism become older, educational services addressing their needs begin to be replaced with services focusing on specific issues such as depression and anxiety. Young adults and adolescents with anxiety or depression are often prescribed antidepressants to alleviate negative thoughts. Careful monitoring with antidepressants is critical because such medications are known to increase the risk of suicidal thoughts and behavior. Individuals with autism should be monitored carefully, not only by their service providers, but also by family members and friends who are most familiar with their behavioral patterns. Anyone, but most especially individuals with autism, who are started on antidepressant therapy should be monitored for unusual behavioral changes or deterioration of mental or physical behavior. For individuals with autism, this presents the additional challenge of addressing issues involved in language, communication, and social relationships. Consultation and observation cannot rely on standard medical or psychological diagnostic descriptions. Accommodations for individuals who process language differently, communicate with a unique style, and have difficulty with social skills are yet to be reported and will require great sensitivity on the part of the mental health worker, as well as collaboration with family members. If possible, childhood school and medical records should be reviewed for history of behavioral patterns, as well as successful and unsuccessful social and academic interventions.
Adolescents and young adults struggling for individualization may not have the understanding or ability to inform mental health care workers about medications they are taking. Potentially dangerous drug interactions from prescriptions, over the counter drugs, or natural dietary supplements or herbs taken for other medical or psychiatric issues are risk factors. In addition, adolescents and young adults may self-medicate with illegal substances, not realizing that they may be creating dangerous drug interactions.
Language and communication issues may, furthermore, affect their ability to describe new or changing side effects of medication, for example, nausea, bleeding, increased restlessness, or hallucinations. They may not be able to compare how feelings changed before and during medication, and this information may need to be solicited in a nontraditional manner. In addition, social issues may interfere with the ability of some individuals with autism to keep routine medical appointments or to seek clarification from mental health workers regarding the logistics of the medications, for example, how often to take it or under what circumstances.
Many of the same instructional strategies used in childhood can be utilized to assist adolescents and young adults with autism to use pharmacological interventions successfully. Accommodations for language and communication issues for children with autism often employ visual supports. Visual supports are a means of making auditory information concrete; that is, the visual information can be accessed repeatedly. Examples include calendars, notes, and video modeling. The common feature across all visual supports is that keywords or key behaviors are presented pictorially with a minimum of words. Visual supports can be used to organize a sequence of events as well as to provide a visual schedule. In order for visual supports to be meaningful, the format must be age appropriate and whenever possible designed by the adolescent or young adult.
Portability is also an important consideration for adolescents and young adults. With the advent of technology, visual supports can be incorporated in electronic devices such as iPhones or Androids. Applications can provide not only visual but also auditory support, such as a musical tone to remind the individual to consult or review a visual support. To accommodate those individuals with autism who fear or are unable to make appointments with mental health workers, special programs can be devised to provide communication through e-mail or restricted social networks.
Because variability exists within the category of ASD, visual supports must be designed with the unique strengths of the individual. As with most interventions, the least intrusive visual supports should be tried first. What is least intrusive for one adolescent or young adult with autism varies considerably. The need for collaborative effort in designing visual supports is clear. In conjunction with the primary care physician, mental health workers or family members can work together to create one or more visual support systems to assist the individual with autism communicate the effect of pharmacological interventions and adhere to schedules independently.
Behavioral intervention targets overt behavior problems and is sometimes combined with pharmacological treatments. Behavioral approaches grounded in rigorous, systematic, and objective procedures to obtain reliable and valid knowledge relevant to education activities and programs are considered the cornerstone of many interventions for individuals with autism (Mesibov & Shea, 2011). Methodological differences and varied interpretation of results has hindered solid agreement on the identification of effective and evidenced-based intervention for the entire range of individuals with autism (Simpson, McKee, Teeter, & Beytien, 2007). Additionally, the focus on measureable behaviors may have inadvertently limited intervention to short-term goals, which are simple to quantify, rather than goals that have more social validity, such as development of personal relationships, enhancing quality of life, and adaptation within the community (Kazdin, 2008). The autism intervention research literature is lacking, particularly in the areas of treatment and education for adolescents and adults (Mesibov & Shea, 2011). Regardless of academic achievement, the goals for individuals with autism ultimately must address life skills expected of adults to the greatest degree possible. In spite of the difficulty associated with measurement, goals need to focus on employment, independent living, and social relationships associated with the world of the adult (Klin et al., 2007). Given that many adolescents and young adults with autism struggle with depression and anxiety, the concerns of the adult world present a significant challenge not only because of the conditions and emphasis on academic acquisition in childhood but also because no research base in the adult world has yet to be established. Traditional good health practices, such as exercise, eating well, and getting sleep may help to reduce some anxiety and depression, but direct and personalized intervention will be necessary to develop skills that will allow for more quality inclusion in the postsecondary world of adults. Utilizing the interests and building on strengths of the learner in the not-so-measureable world of employment, independent living, and social relationships may lead, at least on a one-to-one basis, to a higher quality of life. What is quite clear is that intervention and support in core areas for adolescents and adults with autism is a lifelong process.
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Dr. McCoy is an associate professor at Mary Lou Fulton Teacher College, Arizona State University.