2020-21

PEERS® Australia

WWW.peersaus.com

Content

1. Our Objective
2. Mission Statement
3. Our Vision
4. Our Work
5. Agenda
6. Evidence-based approaches
7. Language that we use
8. Overview of autism and challenges faced by individuals
9. Autism prevalence and diagnosis
10. Comorbid diagnosis
11. Social relationships
12. Executive functions
13. Employment
14. Independence in living
15. Women on the spectrum
16. Quality of life
17. What questions should we be asking
18. Evidence-based practice (EBP)
19. Change, Goals and Frameworks
20. PEERS® Australia
21. Different perspectives

In Australia, many adolescents and young adults on the autism spectrum experience poor social relationships, post–secondary education, employment and independent living outcomes - and these are impacted by factors such as psychiatric comorbidity, socio- cultural factors, and the presence and magnitude of symptoms

Our objective

To increase awareness and support dissemination of existing evidence-based, solution-focused approaches which aim to improve outcomes for individuals who have a diagnosis of autism across socio-cultural, educational and employment domains

Mission statement

PEERS® Australia is committed to supporting people who have a diagnosis of autism and their families/carers to enable them to engage in a life which has meaning and purpose.

• The current reality is that despite numerous agencies providing autism services, and significant autism research conducted in Australia, there is a paucity of engagement with evidence-based practice.
• For teens and young adults in particular, this lack of evidence–based practice and its implementation, influences developmental and future outcomes, including friendships, interpersonal relationships, and academic/vocational success.
• Also, challenges in navigating social relationships impacts on psychological strengths and well being, underpinning mental health issues including anxiety, stress, depression, suicidal ideation and suicidal attempts . Ultimately, impact is widespread and systemic.
• The tools for improving outcomes, whether it is medical therapies, Acceptance and commitment therapy (ACT), Cognitive behavioural therapy (CBT), or evidence-based post-secondary education transition practices to assist adolescents and young adults, already exist.
• These services, programs and approaches are however not being widely used within this population.
• PEERS® Australia advocates addressing the barriers to the implementation of best practice for professionals working with individuals who have a diagnosis of autism.

Our Future Vision

Broad implementation of existing evidence-based, developmentally informed, and manualized interventions and support programs to address the specific needs and issues frequently encountered by individuals who have a diagnosis of autism.

Our work

• Our work focuses on closing the gap in services for adolescents and young adults who have a diagnosis of autism and empowerment of families/ carers.
• So far, we have focused on dissemination in Australia of the world-renowned Program for the Education and Enrichment of Relational Skills (PEERS®), which provides evidence-based social skills programs to preschoolers, adolescents, and young adults who have a diagnosis of autism, attention deficit/hyperactivity disorder, anxiety, depression, and other socio-emotional problems.
• PEERS® (developed by Dr Elizabeth Laugeson, UCLA) has expanded across the globe and is used in over 80 countries. To date, we have assisted in certifying over 300 PEERS® Providers at a national and international level.
• The innovation of PEERS® to other programmes is the intensive training of parents/carers, use of Socratic method, provision of real world opportunities to develop skills and gain feedback in naturalistic settings, use of integrated role play/ demonstration, behaviour rehearsal and, experiential learning.
• In ongoing development of PEERS®, The College to Career Transition Program is an innovative program offering for undergraduate and graduate students who have a diagnosis of autism who are interested in acquiring job-related, social, and practical skills, a successful transition from educational to employment settings.
• The program teaches students necessary skills for obtaining and maintaining a job and provides an internship experience to practice learned skills. The program creates a scalable solution to employment barriers faced by individuals and serves as a model of higher education training for post- secondary educational institutions.
• PEERS® Australia aims to host the PEERS® for Careers training in Australia following completion of program research.
• The core goal is to enable competitive employment for individuals on the autism spectrum as well as shifts in work culture to embrace neurodiversity in the workplace.

Agenda

Maximising potential

Inclusive Stakeholder Advisory Board

Targeted interventions

Vision, Goals, Strategy, Process, Implementation, Evaluation

Educational and workplace domains - optimising person-environment fit

Minimising barriers

Outline of EXISTING EVIDENCE-BASED APPROACHES adapted for individuals who have a diagnosis of autism

• Acceptance and Commitment therapy (ACT)
• Cognitive Behaviour Therapy (CBT)
• Dialectical Behavior Therapy (DBT)
• Brave online
• Choicemaker Self-Determination Curriculum and Lesson Packages
• CIRCLES ( Communicating Interagency Relationships and Collaborative Linkages for Exceptional Students)
• Exposure and response prevention
• Girls Night Out program
• Mindfulness-based cognitive therapy
• Facing your fears (FYF) program

Outline of EXISTING EVIDENCE-BASED APPROACHES adapted for individuals who have a diagnosis of autism

• MASSI (Multimodal Anxiety and Social Skills Intervention)
• Mastering your ADHD program
• PEERS® (Program for the Education and Enrichment of Relational Skills)
• Rational Emotive Behaviour Therapy (REBT)
• SDIEP ( Self-directed Individualized Education program)
• SDLMI (Self-Determined Learning Model of Instruction)
• UOT ( Unstuck and on target program)
• Whose future is it anyway (WFA)
• The Autism MEAL Plan

Outline of EXISTING EVIDENCE-BASED APPROACHES adapted for individuals who have a diagnosis of autism

Current best practice for children < 6 years.

• Adapted Video Interaction for Promoting Positive Parenting (iBASIS-VIPP)
• Video-feedback Intervention to Promote Positive Parenting adapted to Autism (VIPP-AUTI)
• Preschool Autism Communication Therapy (PACT)
• Joint Attention Symbolic Play Engagement and Regulation (JASPER)
• Early Start Denver Model (ESDM)
• Pivotal Response Treatment (PRT)

The Language we use

What words do people prefer to use to describe people on the autism spectrum? ‘Autistic’?, ‘with autism’?, ‘has autism’? The language we use is important because it embodies and can therefore help change attitudes towards autism.

• Research conducted by The National Autistic Society (NAS), the Royal College of GPs and the UCL Institute of Education, and published in the Autism journal (2015) looked at the preferences of people on the autism spectrum, their families, friends and professionals around the language used to describe autism.
• The findings confirmed that there is no single term that everyone prefers. However, they suggest a shift towards more positive and assertive language, particularly among autistic communities where autism is seen as integral to the person. Survey responses from 3,470 people were analysed, including 502 autistic adults, 2,207 parents of children and adults on the autism spectrum, 1,109 professionals, and 380 extended family members and friends.
• The research found that all groups like the terms ‘on the autism spectrum’ and ‘Asperger syndrome’. Autistic adults like the identity-first terms ‘autistic’ and ‘Aspie’, whereas families didn’t like ‘Aspie’.
• Professionals also like the term ‘autism spectrum disorder (ASD)’.
• The research shows that language preferences are evolving, and we will continue to research and test how different groups prefer to speak about autism.
• To reflect the findings of this research we have used the terms ‘on the autism spectrum’ and ‘who have a diagnosis of autism’ for the purpose of this submission

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• Autism, a pervasive, neurodevelopmental condition (Happé & Frith, 2014; Ozonoff et al., 2014) is defined as a spectrum condition in accordance with the latest revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) (American Psychiatric Association, 2013), the DSM-5. This revision of the DSM-5 recognizes the extensive phenotypic heterogeneity that presents in individuals who have a diagnosis of autism. However, autism is unified diagnostically by the clinical dyad of universal impairments in socio-communicative traits and presentation of repetitive, restricted behavioral patterns and interests (American Psychiatric Association, 2013).
• In sum, beyond these core symptoms, individuals who have a diagnosis of autism range from those who do not communicate verbally to those who have acquired their PhDs. Hence, autism is conceptualized as a spectrum. Individuals vary in terms of language, intellectual, academic, executive function, and adaptive abilities, just to name a few. Also, the presentation of sensory abnormalities, repetitive behaviors, and intense interests varies widely across individuals as do social difficulties. For example, while some individuals show little to no interest in socializing with other people, many others are socially interested, but lack the skills to initiate or maintain relationships.
• The following overview looks at variable traits, and outlines a range of characteristics, termed comorbid conditions that commonly occur in individuals who have a diagnosis of autism.
• Considerable variation exists in autism from person to person in relation to symptom expression (Matson & Jang, 2014) severity and range of symptoms, and the presentation of additional traits within physical, biomedical, cognitive and neuropsychiatric dimensions (Gabis & Pomeroy, 2014). This diversity of characteristics across the diagnostic spectrum reflects the extensive heterogeneity in etiological, cognitive and also behavioral domains.

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• However, core features are shared in individuals who have a diagnosis of autism, comprising of the impaired social interaction and reciprocity, difficulties in understanding, developing, and sustaining relationships, specifically peer relations (Chevallier, Kohls, Troiani, Brodkin, & Schultz, 2012), delays or challenges in verbal and non-verbal communication, (van Buijsen, Hendriks, Ketelaars, & Verhoeven, 2011 ) and, stereotypic, repetitive interests and activities, and restricted behaviors (Funabiki, Murai, & Toichi, 2012; Kaiser, Delmolino, Tanaka, & Shiffrar, 2010).
• In examining early traits, the core characteristics identified in individuals who have a diagnosis of autism emerge in stages of delayed, diminishing, or atypical development within the first 12 months of age (Elsabbagh & Johnson, 2010). Atypicalities or delays often present in reciprocal affective behaviour, joint attention (Ozonoff et al., 2014), visuomotor exploration, imaginative play, responding to own name ( Wilke, Tarbox, Dixon, Kenzer, Bishop & Kakavand, 2012) implicit perspective taking, verbal and non-verbal communication, imitation and motor function (Stewart, McIntosh, & Williams, 2013). Additionally, restricted, repetitive behaviors and interests, inflexible disengagement of visual attention and extreme temperament (Elsabbagh & Johnson, 2010) often occur in early development.
• Despite the presentation of early traits, children identified with a diagnosis of autism on average, are diagnosed after 4 years of age (Centers for Disease Control and Prevention, 2014). A recent study aimed at developing indicators for early diagnosis in autism, studied over 2000 children (ages 17-37 months) utilizing the Baby and Infant Screen for Children with autism traits (BISCUIT). Five items critical for early diagnosis were identified using functional analysis and receiver operating characteristic (ROC) analysis. The emergent criteria included >“development of social relationships; use of nonverbal communication; engages in repetitive motor movements for no reason; shares enjoyment, interest, or achievement with others; and interest in participating in social games, sports, and activities” (LoVullo & Matson, 2012, p .970).

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• Language challenges range from technical speech problems, such as articulation, rhythm, modulation, tone and pitch possibly reflecting structural aspects in respect to brain functioning (Billingsley-Marshall, et al., 2007), to challenges in turn taking, misunderstanding figure of speech, misinterpretation of nonverbal communication, and difficulty utilizing language in the social context. Overall, the qualitative and quantitative traits of language delays and impairments represents an ongoing challenge in defining causation, and thus devising interventions to enhance communication skills.
• Beyond early development, late onset characteristics emerge in relation to atypical cognitive profiles, including atypicalities in social perception and cognition (Happé & Frith, 2014) executive function, and perceptual and information processing (Ben-Sasson et al., 2009). Specifically, the features associated with social cognition include atypicalities in social interaction, recognizing facial emotions (Katsyri., Saalasti, Tiippana, Wendt, & Sams, 2008), motion perception, social attention, socio-emotional relating, social motivation (Chevallier et al., 2012), emotional regulation (Bachevalier & Loveland, 2006), mentalizing and visuo-perspective taking (Zwickel, White, Coniston, Senju, & Frith, 2011), self- representation; involving altered psychological aspect of self (Uddin, 2011), and alexithymia; concerning difficulty understanding and describing own emotions and metacognitive awareness ( Lombardo & Baron-Cohen, 2011).
• The features associated with executive function emerging later in maturation are proposed to be challenges in social interaction, cognitive flexibility, planning, inhibitory control and memory (including semantic and working memory) (Boucher, 2012). In addition, perceptual and information processing features encompass systemizing, central coherence, global vs. local perceptual functioning and sensory stimuli sensitivity (Jasmin et al., 2009).

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• Lastly, in adolescence and adulthood, individuals experience challenges in various aspects of independence, and also in the development of relationships. Furthermore, neuropsychiatric conditions are frequently reported in the stages of adolescence and adulthood. In particular, in individuals who have a diagnosis of high functioning autism, a high prevalence in social anxiety disorder has been outlined (Hollocks et al., 2014).
• Overall, widespread difficulties in socio-communicative capacities associated with challenges in social cognition, greatly compromise abilities in social adaptation, with consequences in navigating the social world. For individuals who have a diagnosis of autism, this difficulty is enduring, and presents irrespective of levels of intelligence, or language ability.
• The high rate of comorbidity in individuals who have a diagnosis of autism, posited to be greater than 70%, is seen to be associated with a series of factors including shared pathophysiology, secondary effects of developing with autism, shared symptom dimensions and related mechanisms, and also overlapping diagnostic criteria (Lai et al., 2014a). Co-occurring conditions range from medical, developmental, and psychiatric conditions, with onset commonly occurring in childhood, and continuing into adolescent and adult stages (Matson & Jang, 2014).
• Common medical comorbidities include epilepsy, which occurs in approximately 40% of children (Gabis & Pomeroy, 2014), however late onset is also seen in adolescence and adulthood (Mannion & Leader, 2013). Further medical conditions include immune dysregulation (Fatemi et al., 2012), gastrointestinal problems (Jeste & Geschwind, 2014), sleep disorders (Klintwall et al., 2011) and genetic syndromes, or syndromic autism, wherein autistic characteristics are a common phenotypic expression in multiple genetically determined neurodevelopmental conditions, including Fragile X Syndrome, Tuber Sclerosis, Angelman Syndrome and Rett Syndrome (Moss &Howlin, 2009).

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• Co-occurring neuropsychiatric disorders comprise of obsessions, phobias, anxiety and depression (Gabis & Pomeroy, 2014). Recent studies examining comorbid pathophysiology in infants and children who have a diagnosis of autism, (ages 17-37 months) in comparison with atypically developing children without autism and children with Pervasive developmental Disorder-Not otherwise specified (PDD-NOS), reported significantly higher sleeping and feeding problems (Kozlowski, Matson, Belva and Rieske, 2012) as well as higher anxiety and avoidance scores (Davies et al, 2012) in the children who have a diagnosis of autism. A further study investigating executive function (EF) and social cognition and their relationship to anxiety and depression in adolescents who have a diagnosis of autism, reported that greater anxiety was associated with poorer EF, though no relationship was shown between higher levels of social cognition and greater levels of anxiety (Hollocks et al., 2014).
• Within developmental conditions, subtypical cognitive function is estimated at a rate of approximately 50%, measured at 2 standard deviations below the mean, thus indicating a score of <70 on Standardized Q tests (Gabis & Pomeroy, 2014). In examining gender in autism in relation to 10, male: female ratio appears to be largest in individuals within typical 1Q levels (Gillberg, Cederlund, Lamberg, Zeijlon, 2006). Also savant skills and higher cognitive function is reported to be prevalent in individuals who have a diagnosis of autism despite cognitive impairments (Johnson &Meyers, 2007). The savant syndrome although largely unexplained, is proposed to be related to both implicit and explicit learning, advanced perceptual processing, spontaneous learning and creative manipulation of the integral structures of complex information systems, such as music, numeracy and visual perspective (Dawson et al., 2008). Taken together, these findings highlight the complex relationship between gender, 1, and traits (Ryland, Hysing, Posserud, Gillberg, & Lundervold, 2014).

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• As outlined previously, in the DSM-4 language impairments in autism were a defining trait, though this impairment is now excluded in the DSM-5. A high variability in language presents among individuals and subgroups, with communication difficulties persisting over time, and irregular communication trajectories frequently occurring. Autistic regression, often occurring at 2 years of age, is strikingly defined within language skills (Matson, Kozlowski, & Matson, 2012), with a regression rate of 30% found in a recent child study (Xi, Zhao, &Lui, 2010) .
• An area often underlooked is neuromotor development and function in individuals with a diagnosis of autism. Contemporary research involving multiple studies, case reports and case-control studies has evidenced substantial motor impairments and atypicalities across the spectrum of autism. Additionally, despite variation existing in motor abilities across individuals motor symptomology is viewed as highly prevalent (Bhat et al., 2011; Gowen & Hamilton, 2013; Mostofsky & Ewen, 2011; Stanley-Cary, Rinehart, Tonge, White, & Fielding, 2011) with the incidence of motor impairments ranging between 50-100% (Haswell, Izawa, & Dowell, 2009; Lane, Harpster, & Heathcock, 2012). Importantly, accumulating evidence also suggests the presentation of motor symptoms to be one of the earliest predictors of autism diagnosis (Nebel et al., 2014).
• Difficulties in skills relating to gross motor and fine motor function, coordination, postural control, praxis, imitation, and perceptual motor skill, together have potential effects on the development of core autistic features.
• Delays and atypicalities in postural mechanisms are assumed to influence development in both physical and cognitive domains, with consequences for motor coordination, body awareness, spatial awareness, social skill capacities, learning and academic skills (MacDonald et al., 2013). Specifically, postural delays are of significance when considering normative developmental literature, which outlines postural advancement as scaffolding emergent developmental opportunities during the period of infancy, and also enhancing progressive and sophisticated interactions in the social environment. For example, postural delays in infancy would reduce accessibility for exploration and learning, as well as affecting engagement in social environments (Nickel et al., 2013).

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• Motor development is also proposed to be closely associated with outcomes in learning, as well as social and psychological development (Rinehart & McGinley, 2010). Furthermore, the acquisition of motor skills occurring via repetition, or procedural learning, is proposed to be associated with development of play skills (Clearfield 2011), communication and social development (Ullman, 2004) and also adaptive behavioral skills. Notably, a study examined the relationship between motor skills and social communication skills in a large sample of children with a diagnosis of autism, and found children with greater impairments in motor function to have greater social communication challenges (motor skills significantly predicted calibrated autism severity (p<. 05) (Macdonald, Lord, & Ulrich, 2014).
• In addition, extensive research suggests a relationship between motor function and visual and motor imagery, mental rotation, temporal judgment (Behere et al. 2012), perception, executive function, (Williams, et al., 2006) working memory ( Bhat et al., 2012; Piek, Gasson, & Summers, 2008) literacy and numeracy (Bobbio, Gabbard, Goncalves, Baros Filho, & Marcillo, 2009).
• Lastly, perceptual-motor function, integral to motor development and independence skills, is often found to be atypical in individuals with a diagnosis of autism. Of note, impaired perceptual-motor skills are proposed to constrain socio-communicative and physical interactions during critical periods of development (Fournier et al., 2010).
• An additional area of concern for most individuals who have a diagnosis of autism is the development of adaptive skills. As with social skills and many other areas of functioning, the magnitude and scope of these difficulties often vary considerably across individuals. While intellectual ability is often discussed in the context of adaptive skills, several studies of populations of individuals who have a diagnosis of autism and who do not have an intellectual impairment have indicated that there is only a weak relationship between one’s intellectual ability and one’s adaptive skills for this group.
• In other words, despite not having an intellectual impairment individuals who have a diagnosis of autism often have significantly lower adaptive skill scores than would be expected, given their level of intellectual functioning. These findings indicate that individuals on the autism spectrum may require greater support than do other individuals who have similar intellectual abilities. This is another example of the vast heterogeneity present across the population.

Overview of autism and challenges faced by individuals who have a diagnosis of autism

• Finally, it is important to understand the difference between diagnosis and classification. While medical professionals are engaged in diagnosis, educational professionals are tasked with determining whether an individual has significant challenges requiring special education services or accommodation modifications.
• Also, to date, there is a paucity of research to fully understand what specific programs, services or accommodation modifications are implemented within educational settings to fully support the needs of individuals and improve academic and social outcomes in educational contexts.
• Within the literature, key themes in educational settings show difficulties with peer relationships, sensory issues, a lack of knowledge about the characteristics and needs of individuals, as well as lack of evidence-based strategies and autism-friendly culture in general.

Real-world challenges

• Due to the tremendous amount of variation in terms of both trait presentation and functional ability in individuals a one-size-fits-all approach to providing educational and clinical supports, as well as services to this population is precluded. Also, heterogeneity requires multiple disciplines to scaffold individuals as they transition to adolescence and to adulthood.
• The challenges faced by adolescents and young adults can be better understood by considering the unique socio-cultural changes that most individuals experience within these stages.
• As highlighted, adolescents and young adults have poor social relationships, employment, post–secondary education and independent living outcomes, and these are impacted by factors such as psychiatric comorbidity, socio-cultural factors, and the presence and degree of symptoms.
• Research efforts, particularly large-scale studies are needed, focusing on best practice so to improve outcomes of adolescents and young adults.

Autism Prevalence and Diagnosis

Prevalence

• Major research efforts have focused on accurately estimating the number of current cases within the population at a given point in time.
• Prevalence, is calculated as the number of both new and preexisting cases at a specified point in time, divided by the total population at that same point in time, as opposed to incidence, which is primarily concerned with the number of new cases during a specified interval.
• On average, relative consistency in findings across differing assessment tools provides increased validity to the assertion that ASD diagnoses have rapidly increased from the early 2000s.
• Prevalence considerations need to take in to account that researchers have often attributed increasing trends in the prevalence rates of autism to be due to increased awareness, better resources for identification, and to changes in diagnostic criteria. Given changes in all of these factors over time, it is difficult to definitively determine true prevalence rate increases.

Diagnosis

• While the focus in the field has been on early screening and diagnosis, many adolescents and young adults require diagnostic services. Indeed, there are many who argue that there are adults who would have been identified with autism if the current screening and diagnostic approaches had been available 30–40 years ago
• Diagnosis results from the congruence of data from multiple informants and from multiple methods. First, parents/caregivers participate in a developmental interview with a clinician where they discuss the child’s behavior and progress towards developmental milestones. In addition, behavior rating scales are often given to the parents/caregivers and other informants and serve to indicate if the child’s behavior across settings indicates the presence of traits associated with autism.
• Finally, the clinician completes a direct observation of the child’s behavior over a period of time. This is an overview of typical diagnostic steps, and several resources provide more detailed information about the process and specific instruments.

Comorbid diagnosis

• In recent years, researchers have increasingly focused on the co-occurrence of psychological disorders in individuals who have a diagnosis of autism to better explain outcome patterns.
• Studies consistently suggest that a large percentage of individuals on the autism spectrum manifest co-occurring mental health and medical conditions, with data indicating comorbidity in 60%
• In comparison to comorbidity rates across other disabilities, sources suggest that co-occurring psychiatric conditions may be twice as likely in individuals who have a diagnosis of autism.
• Specifically, obsessive compulsive disorders (OCD), anxiety, and depression are the most common comorbid disorders, with estimates that up to or greater than 30% of individuals meet an OCD diagnosis, and 50% or more of individuals meet diagnostic criteria for anxiety or depression.
• Adolescents and adults who have a diagnosis of high- functioning autism are more likely to be diagnosed with a comorbid depressive disorder and more likely to report social anxiety symptoms.
• This may be a reflection of a greater awareness of social differences, a general desire to evade uncomfortable social situations, and a result of learned helplessness and subsequent avoidance following negative experiences .
• For example, the increasing social emphasis and the ever-present social demands of adolescence are likely to more blatantly expose the characteristic social skill challenges, thus resulting in negative social experiences. Such experiences may manifest in social anxiety and depressive symptoms, which further undermine future attempts to relate and socialize.

Comorbid diagnosis

• Intellectual ability is an additional frequently studied factor in individuals who have a diagnosis of autism, often considered the most influential predictor of outcomes over time.
• A multitude of studies suggest that individuals who have a diagnosis of autism and comorbid Intellectual impairment display less progress and significantly more impairment over time in comparison to non–intellectually impaired individuals who have a diagnosis of autism.
• Appropriate diagnosis and the consideration of comorbidity is challenging for several reasons, as comorbidity may both reflect and aggravate autistic traits, and teasing out characteristics that may be similar across disorders (e.g., autism and social anxiety) is likely to be complicated. Primary differential diagnoses, which share common symptomology characteristics with autism and are also sometimes classified as comorbid, include Social Anxiety Disorder, Psychotic Disorder, Personality Disorder, and OCD.
• Additionally, communicating symptomology—particularly for internalizing disorders such as anxiety and depression, which often require discussion of abstract, non-concrete terms (e.g., feelings, anxious)-may represent a tremendous challenge for individuals who have a diagnosis of autism. The complexity of comorbidity is that multi-disorder characteristics blend together to more severely hinder functioning, and the sad reality is that this pattern of functioning is more common than not.

Anxiety

• Adolescents and adults who have a diagnosis of autism are at high risk for clinically significant symptoms of anxiety.
• Anxiety can have highly detrimental effects on day-to-day functioning and quality of life for individuals, highlighting the importance of timely assessment and effective treatment.
• Accurate symptom identification and differential diagnosis can be challenging due to the similarity of presentation of many anxiety and autistic traits.
• Although there are no current gold-standard tools for assessment of anxiety in individuals who have a diagnosis of autism, clinicians are encouraged to use a comprehensive multi-informant, multi-modal assessment approach.
• Research to date supports the use of Cognitive-behavioral therapy (CBT) for treatment of anxiety particularly in individuals who have a diagnosis of high-functioning autism. Autism-specific treatment modifications may be helpful for achieving optimal treatment response.
• There is limited available evidence to date regarding the effectiveness or potential adverse effects of pharmacological treatments for anxiety in this population.
• Future research is needed to understand and to examine short- and long-term efficacy and effectiveness of a range of anxiety treatments.

Social relationships

• As autism is characterized by persistent challenges in social communication and social interaction, of all outcome areas, it is perhaps least surprising that establishing and maintaining social relationships is extremely challenging for young adults.
• Many individuals express a desire to have more fulfilling social lives but describe experiencing pervasive loneliness during adolescence and into adulthood .
• In addition to inhibited social skills, difficulty with social reciprocity, and difficulties in taking others’ perspectives, other characteristic autism traits such as,preference for sameness, high attention to detail, and strict adherence to rules, may undermine successful relationship-building.
• Specifically developing relationships requires initiation, risk-taking, and the ability to adapt to change, all areas which individuals who have a diagnosis of autism typically struggle. Numerous studies have sought to better understand the experiences of individuals through assessment of their perceptions within social exchanges.
• Studies have shown individuals who have a diagnosis of high-functioning autism endorsed reading other people’s feelings and responding to other people’s feelings as two of the most significant challenges they faced in social situations.Though some individuals who have a diagnosis of high-functioning autism have less difficulty with understanding complex emotions, individuals may struggle to appropriately respond to such emotions in social situations, which in turn may result in feelings of isolation and social frustration.
• Other studies have found that university students who endorsed more autism-like characteristics such as social-skill challenges, and preference for sameness also reported fewer friendships, shorter duration of friendships, and increased levels of loneliness than did peers with fewer autism-like characteristics.
• In addition to these factors, individuals who have a diagnosis of autism often struggle to appropriately articulate sentence elements; i.e they may discuss topics in an out-of-context, repetitive, or overly formal manner; may gaze in unexpected ways; and may struggle to pick up on the conversational cues of others, all of which are important behaviors for successful social exchange.
• Taken together, these factors help explain why individuals who have a diagnosis of autism consistently report challenging social outcomes.

Social relationships

• Studies assessing peer relationships and social activity amongst adolescents and adults, show the prevalence of same-aged peer friendships to be low, with samples indicating approximately 50% having no peer relationships outside of prearranged settings (e.g., school or work)
• Other studies assessing young adults’ social and community participation suggest 50% of samples never having been invited to a social activity with friends, and that one in four were socially isolated in that they never saw friends or spoke with them on the phone.
• In struggling to develop friendships, individuals consequently have difficulties in developing more intimate, romantic relationships. Specifically, individuals who have a diagnosis of high-functioning autism often misinterpret disinterest by potential partners and may not engage in appropriate courtship behaviors.
• In addition to inhibiting the development of romantic partnerships, autism-related traits may hamper the building of friendships which often serve as reference points to gauge what appropriate social and romantic boundaries look like.
• Thus, in responding to a desire for intimacy, individuals who have a diagnosis of autism are disadvantaged both in regard to autism-related traits that make interpreting social signs more challenging, and because they have limited opportunities to learn from models about how to appropriately show interest and when to disengage from pursuing a potential partner.

Social relationships

• To understand how inherited autism-related skill traits impact or inhibit social efforts, studies have attempted to understand the experiences of individuals by examining how (e.g., where and with whom) they typically socialize. Research suggests that most social encounters reported by young adults occur within prearranged and structured settings (e.g., school or work)
• While adolescents are more likely to report the presence of friendships than are adults, this younger group is also more likely to be within a formalized school setting surrounded by same-aged peers and supportive adults, and thus more likely to have increased opportunities to socialize.
• Within the school setting, research suggests that adolescents may be more likely to report teachers and other adults as friends due to a perception of these individuals as more socially supportive than same-aged peers.
• Upon exiting formal schooling, research suggests adults are more likely to engage in social and recreational activities that require less social interaction and that are routine-based, such as taking a walk rather than casually socializing with friends.
• Taken together, these social behaviors and outcomes for adolescents and young adults are a direct reflection of an inhibited skill set that is increasingly exposed in the face of contexts that value and demand more advanced social interaction.
• A crucial factor affecting virtually every other outcome domain area, autism-related social traits play out in a vicious cycle in which social and communicative challenges undermine relationship formation and result in decreased opportunities for social learning, which ultimately further inhibits the development of successful relationships.

Executive functions

• Executive functions (EF), a group of brain-based behavioral processes vital for most functions in our daily lives, involve the organization, planning, and control of action. EF encompasses the cognitive and behavioral skills critical for goal-oriented behavior. While there is debate about which processes specifically are involved, theories center on three EF processes: inhibition, working memory, and cognitive flexibility. Fluency and planning are also frequently included under the EF umbrella.
• Executive functions are critical, particularly in classroom and vocational settings. EF abilities are shown to correlate with the ability to inhibit impulses, consider the consequences of our actions, initiate tasks, set goals, organize new information in meaningful ways, and generate solutions for problems. EF challenges have also been shown to predict deficits in play skills , pragmatic language skills and mentalizing, - all functions that are central to functioning in individuals who have a diagnosis of autism.
• Given the dramatic developmental changes in the brain regions that support EF during the period of adolescence, it is critical to evaluate which EF abilities show a distinct profile during this period. In general, youth who have a diagnosis of autism show challenges across all domains of EF particularly in complex tasks that include arbitrary instructions.
• To date, studies of EF in adolescents who have a diagnosis of autism has received relatively little attention, and within the available literature many conflicting findings exist. That said, the overarching pattern suggests that adolescents who have a diagnosis of autism show impairments in all five EF domains. Although, many of the studies are underpowered, thus future studies should aim for larger, homogeneous samples.

Executive functions

• In regard to practice, given the robust evidence for the specific benefits of the activities for EF, and the wider social, cognitive, and physical benefits of these activities for developing bodies and minds, it seems appropriate to suggest that parents, educators, and practitioners work together to identify and facilitate active engagement in an activity that an individual enjoys to scaffold improved EF.
• In addition to readily available, practical community and school activities, there are some specific, structured, school-based curricula and some computer-based games that could also serve to build EF in individual children.
• The extended developmental trajectory of EF means that this set of capacities aligns to neuroplasticity for an extended portion of development, and potentially are amenable to intervention.
• Adolescence is a period of astonishing, rapid change, which can make it frustrating and complex for those directly and indirectly affected, but can also make adolescence an ideal time for intervening to improve skills and remediate challenges.
• Children who have a diagnosis of autism are likely to need additional supports as they enter adolescence and cope with the many physical and cognitive changes that it brings, however viewing this developmental phase as one that is potentially uniquely open to growth and change in positive directions would be of great benefit.

General Traits in young adults who have a diagnosis of autism

• Despite modest improvement over time from childhood to adulthood, generally speaking, individuals who have a diagnosis of autism do not obtain typical levels of functioning and are generally dependent upon various levels of support.
• In particular, amongst individuals with a diagnosis of high-functioning autism, this pattern may reflect struggles to navigate the increasing social relationship, academic, employment, and independent living demands of young adulthood.
• Comorbidity, socioeconomic status (SES), presence and degree of particular traits, and access to post-secondary transition services have been identified as a few of the most influential factors in predicting outcomes across these domain areas.

Employment

• Finding adequate employment after graduating from high school represents a significant challenge for young adults who have a diagnosis of autism. The unemployment rate for people with autism spectrum disorders was 34.1%, more than three times the rate for people with disability (10.3%) and almost eight times the rate of people without disability (4.6%) (ABS, 2018). This statistic is particularly troubling when one considers that studies also indicate many individuals had ever been employed.
• Despite limited research in this domain, evidence suggests that autism-related challenges in interacting and clearly communicating may be the most influential factors undermining successful employment experiences. Specifically, studies have displayed that individuals who have a diagnosis of high- functioning autism, who have more advanced verbal IQ scores, and who have stronger conversation abilities have better employment outcomes.
• To this end, employment opportunities for individuals with lower cognitive abilities and for those with behavioral issues are likely to be more difficult to secure. Even if young adults have average cognitive abilities and meet qualification requirements, other autism-related traits such as difficulties in matching personal strengths and weaknesses to job-specific tasks, low frustration tolerance, and interference from common comorbid medical conditions such as epilepsy and noise sensitivity, have the potential to negatively impact both the obtaining and maintaining of competitive work opportunities
• In this sense, it is important to understand how individuals struggle in the face of job-related societal expectations. For example, talking with a potential employer on the phone and participating in a job interview are two common societal practices that, among other things, allow employers to assess one’s social skills, relatability, and likelihood of “fit” within a particular work setting. Research suggests that these interactions may be particularly anxiety-provoking and challenging for individuals and thus may serve as barriers to obtaining employment despite qualifications.
• Inadequate post–high school support in the form of targeted services to help individuals research, apply to, and prepare for potential job opportunities may help explain their poor employment outcomes.
• In reviewing the literature base, upon exiting high school, services dramatically decrease . Research suggests that individuals who have a diagnosis of autism in particular suffer from a lack of post–high school supports.

Employment

• Overall, studies suggest, that the majority of individuals who have a diagnosis of autism and intellectual impairment receive employment/vocational services, and that these individuals were much more likely to be employed than were individuals who have a single autism diagnosis, with studies showing very few receiving comparable services. These results not only suggest that post–secondary services for individuals who have a diagnosis of autism are inadequate, but that programs or services for individuals with other disabilities may be more streamlined into the work environment.
• In general, research continues to identify a service gap in that individuals who have a diagnosis of autism often receive no post–high school vocational or life skill services, are slow to enter the workforce, and report the poorest employment rates and lowest average salaries.
• Though some research suggests that the use of post–high school employment services can help young adults obtain jobs at higher rates, research regarding this topic continues to be limited. This gap in research regarding post–high school employment outcomes and limited post–high school transition services for individuals is concerning and is becoming an increasingly important issue for an elevated number of high school graduates.

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Outcome of Un/ Underemployment for People on the Autism Spectrum

• Research has indicated a high rate of unemployment and underemployment for autistic young people without intellectual impairment. An Australian study by Neary, Gilmore and Ashburner (2015) reported a 51 per cent youth unemployment rate among 15-27 year olds with an ASC without intellectual impairment.

Employment

• Taylor, Henninger and Mailick, (2015) reported that less than 25 per cent of young people on the Autism spectrum without intellectual impairment were employed in work or engaging in further study after school.
• nationwide US survey by Roux, Rast, Anderson and Shattuck (2017) reported a 23 per cent employment rate in adults with an ASC without an intellectual impairment and that less than 25 percent of these young people were employed in work or engaged in further study after school.
• Unemployment and underemployment experienced by autistic young people not only have an impact on the autistic person’s well-being and overall life trajectory, but also on the economy. The economic cost of high unemployment for people on the Autism spectrum has been estimated to be around $3.5 billion per year in Australia (Synergies Economic Consulting, 2011). Studies (e.g., Howlin, Alcock & Burkin, 2005) have identified that there are many long-term benefits of developing effective transition practices for autistic young people without intellectual impairment. Howlin, Alcock and Burkin (2005) suggested that society may be failing to capitalise on the substantial costs of educating people on the Autism spectrum without intellectual impairment if the skills learnt through educating are then not transferred into the workforce.
• Supportive factors or factors that influence positive role transition outcomes include personal characteristics (e.g., level of functioning), provider characteristics (e.g., professional supports) and environmental factors (e.g., current living and working situation) (Felce & Perry, 2005). Of these support factors, the interaction between the individual on the Autism spectrum and the environment has been found to be the highest predictor of a successful outcome (Renty & Roeyers, 2006).

Employment

• Research indicates that the employment outcomes for autistic young people without intellectual impairment are generally less positive than could be expected, based on their intellectual abilities (Iovannone, Dunlap, Huber & Kincaid, 2003). Even when autistic young people without intellectual impairment are employed, the type of employment is often at a significantly lower level than the person’s actual working potential, whereby the jobs obtained are usually unskilled and the employees are underpaid (Cedurland, Hagberg, Billstedt, Gillberg & Gillberg, 2008).
• For example, Baldwin, Costley and Warren (2014) found “existing evidence of underemployment and male employment for adults with autism, and specifically for those without an ID” (p. 2447). The authors also indicated “the issue of ‘overeducation’ as a concern for this group” (p. 2447). Gerhardt (2007) described this as a “disconnect” (p. 18) between what the literature states is possible for autistic young people without intellectual impairment and what is actually occurring.

Outcome of Employment

• The significance of employment in enhancing mental health and quality of life of people who experience mental health concerns has been documented widely (OECD, 2015; Tefft, 2012).
• Employment has been found to improve an individual’s life trajectory through increasing self-esteem, reducing dependency on family members and services and alleviating any symptoms of the mental illness (Cook & Razzano, 2000; Crowther, Marshall, Bond & Huxley, 2001). Research has also indicated that a healthy self-esteem can positively affect a person’s relationships, health and employment (Orth, Robins & Widaman, 2012).

Independence in living

• There is a limited research base regarding independent-living outcomes for individuals who have a diagnosis of autism.
• The pervasive nature of autism in regard to challenges in daily living skills and comorbid mental and physical conditions, as well as a lack of external supports, all adversely affect an individual’s ability to live independently.
• Given that a large portion of young adults report neither obtaining a job nor continuing on to a post–secondary education within the first two years of high school graduation these students are likely to be in the home, where they are likely to have fewer structured services, limited daytime activities, and less consistent support.
• Thus, adapting to the loss of mandated services is likely to present a tremendous challenge to both an adolescent and his/her family/ caregivers.
• In consideration of autism-related research across age groups, there continues to be a large imbalance, with the vast majority of research involving children, and few studies assessing young adults.
• In understanding the experiences of young adults the field continues to be plagued by a lack of studies in the post–secondary, employment, and independent-living domains.
• Despite the limited state of outcome literature, key factors that are influential to the success and challenges faced by individuals who have a diagnosis of autism should be discussed.

Independence in living

• Specifically, emerging adulthood, seen as a unique period of increased independence, change, and exploration for most individuals, is clearly a significant time of struggle for many individuals who have a diagnosis of autism.
• In graduating from more structured and supportive high school environments, young adults are being asked to negotiate novel challenges in unfamiliar settings with fewer supports.
• As highlighted previously, access to all service areas declines after high school, with families reporting difficulties in obtaining services, and or never receiving support of any kind.
• Despite our understanding of the poor outcomes that young adults who have a diagnosis of autism face in regard to social relationship, post–secondary, employment, and independent living domains, the lack of young adult services and, in particular, the presence of a post–high school service cliff suggest that there may be a lack of resources to meet service demands and/or that there is a limited understanding that autism is a lifelong condition, one that does not stop after high school.
• Although the current state of outcomes for young adults is poor, we need to recognize and engage with opportunity for change. In shifting the perspectives of the practitioners, researchers, teachers, parents, and students to view autism as a lifelong developmental condition and in empowering them to support young adults through research-based practices, we can work to better meet the needs of this struggling population.

Women on the autism spectrum

• Females who have a diagnosis of autism often face unique challenges in social-communication, sensory environments, mental health, physical health, gender-related issues and identity development.
• Autism tends to be under-recognized in females owing to a higher likelihood of subtler and partially different behavioral presentation, as well as possible biases on the interpretation of their behaviors by the source of referral or the diagnostician
• Studies using standardized instruments tend to show lower levels of repetitive, restricted, and stereotyped behavior in females, but social-communication differences vary greatly by age and developmental level; males and females may meet the diagnostic criteria in partially different ways.
• The assessment and diagnostic processes for autism are independent of sex and gender, but they need to be optimized by taking into account influences from sex and gender (including gendered socio-cultural contexts), in order to improve the identification of autism in females and their difficulties.
• Accurate and timely identification of autism in females and the recognition of their associated clinical needs are pressing challenges across all levels of service.

Women on the autism spectrum

• Anecdotal clinical and autobiographical observations suggest that compared with males, females who have a diagnosis of autism, may show more social interests and motivation, heightened emotion contagion or affective empathy, increased imagination, more friendships but with different quality, greater camouflaging of social difficulties, and different contents of narrow interests.
• Difficulty with understanding social interactions (e.g., difficulty with mentalizing/cognitive empathy) and unspoken social rules is still a cardinal feature of autism in girls and women (same as in boys and men). Many girls and women are passive and therefore viewed by others as merely shy, while their social difficulties are under-recognized.
• Teenage girls who have a diagnosis of autism also report viewing friendship as important and rewarding. Many of them clearly have the motivation to develop and maintain friendship, but this becomes increasingly difficult during the teenage years—a period when they identify high levels of relational aggression within their friendships, indicating that dealing with social conflicts is a big struggle
• Optimized support for young women is best based on the understanding of their needs and characteristics, targeting resilience and person–environment fit, and taking into account the influences of gendered sociocultural contexts; this often involves not only coaching for social interaction or social skills training, skill-building and graded exposure for the individual, but more importantly, also adjustments to the social and physical environments.

Quality of life

• Many definitions exist for Quality of life (QOL) such as the general well-being of an individual and their perception of their position in life with reference to own culture, values, goals and standards. Indicators of QOL include an individual’s environment, physical and mental health, education, recreation and leisure time, and social belonging.
• At present there is little research about how to assess QOL in populations of people who have a diagnosis of autism. Thus research focusing on overcoming barriers to life satisfaction and evaluating treatment outcomes is much needed.
• One measure, the Patient-Reported Outcomes Measurement Information System (PROMIS) which provides a complete portrait of a person’s quality of life relative to a person who does not have a diagnosis of autism, has been used to evaluate QOL in individuals on the autism spectrum
• The tool captures all the components that inform someone’s QOL: physical health, including sleep and sexual function; mental health, including anxiety, depression and cognitive function; social health, such as family relationships and social isolation; subjective well-being, including life satisfaction and sense of purpose; and overall health. It also includes scales for children and adults of various ages, takes approximately 20 minutes to complete and is freely available.
• A recent study using the PROMIS battery online, assessed over 850 individuals who have a diagnosis of autism, and with age ranges from 5 to 65 years. The study indicated that some said that they have a good quality of life compared with the general population. Overall however, the study found that people who have a diagnosis of autism of all ages to have a lower quality of life. For example, women and girls reported having greater challenges in some areas, including sleep quality, anxiety and social isolation, in comparison to men and boys.
• In sum, the questions from the measure elicited answers that revealed the extent to which people’s circumstances fit their needs, desires and abilities.
• QOL assessments like the PROMIS could enable meaningful conversations among individuals who have a diagnosis of autism, parents/caregivers, clinicians, and researchers about how to scaffold individuals to live their best lives, by their own definitions and on their own terms.

Australian Bureau of Statistics (2018)

Autism and education

• 77.7% of autistic students reported experiencing difficulty at their place of learning. Of those experiencing difficulties, the main problems encountered were fitting in socially (59.8%), learning difficulties (55.3%) and communication difficulties (51.5%).
• Almost half the young people with autism aged 5 to 20 years (45.9%) indicated they needed more support or assistance at school then they were receiving.
• People with autism are less likely than others to complete an educational qualification beyond school and have needs for support that differ from people with other disabilities. Of those with autism, 8.1% had a bachelor degree or higher, compared with 16.1% of those with a disability and 31.2% of those without disability.

Autism and employment

• Participation in the workforce is important for social inclusion and economic independence, but people with autism spectrum disorders may encounter barriers to entering the labour market.
• The labour force participation rate was 38.0% among the 94,600 people of working age (15-64 years), living with autism spectrum disorders. This is compared with 53.4% of all working age people with disability and 84.1% of people without disability.
• The unemployment rate for people with autism spectrum disorders was 34.1%, more than three times the rate for people with disability (10.3%) and almost eight times the rate of people without disability (4.6%).

Level of disability

• Among all people with autism, 68.9% reported having a profound or severe core activity limitation, that is, they need help or supervision with at least one of the following three activities: communication, self-care and mobility.
• What assistance with everyday activities do people with autism receive?
• Notably, the bulk of care was provided by informal carers (relatives or friends), in the core activity areas of self-care, mobility and communication.

Unmet need for assistance

• Of the people with autism who required assistance many did not receive some or all of the assistance they needed, with over half (51.7%) indicating they needed more help with at least one activity. The unmet need for assistance was highest for cognitive and emotional support, communication and mobility.

Economic Costs

“A diagnosis of an Autism Spectrum Disorder (ASD) results in an estimated annual national cost to Australia of $4.5–7.2 billion that is borne by the individuals themselves, their families, their community, and by government. Costs of autism can peak during the periods when a diagnosis is being assessed and when treatments are being administered, but many costs are ultimately on-going and constitute a life-long burden. The accurate identification of ASDs necessarily relies on assessing observable behaviours using timely, accurate, reliable and valid diagnostic procedures. At present, the “gold standard” diagnosis of autism is a lengthy and time consuming process that requires a suitably qualified multi-disciplinary team (MDT) to assess behavioural, historical and parental report information to determine a definitive diagnosis. This is discouraging since failing to accurately identify, or prolonging the identification of, children as having ASD will delay access to apposite intervention and support services. This issue is compounded by the possible 25 fold increase in the recent diagnosis rates of ASD in Australia and resultant pressing demand for delivery of diagnostic services and intervention”.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0106552

What questions should we be asking

1. What unique challenges does immense heterogeneity in individuals who have a diagnosis of autism present? How might this affect designing of effective interventions/support
2. How might the socio-cultural factors faced by adolescents and emerging adults play out for individuals who have a diagnosis of autism
3. Why is it important to take these factors, in addition to individual autism-related traits, into consideration?
4. What are internal and external factors that might have a broad impact across all outcome areas for individuals who have a diagnosis of autism?
5. How might an individual’s functioning in one domain (e.g., social relationships) relate to their functioning and outcomes in other domains (post–secondary, employment, independent living, etc.
6. What adaptive domains should be assessed in individuals who have a diagnosis of autism?
7. What skills may help young adults gain employment?
8. Which treatment for anxiety has the most current empirical support for individuals who have a diagnosis of autism?
9. What are examples of modifications to standard anxiety-treatment protocols for individuals who have a diagnosis of autism?
10. What modifications to CBT have been suggested for children who have a diagnosis of autism?
11. How are maladaptive thoughts/cognitions targeted in CBT for adolescents who have a diagnosis of autism?
12. What are the implications of executive function challenges for planning and implementing interventions?
13. What demographic factors increase risk of suicide and self-injury in adolescents who have a diagnosis of autism?
14. Why are anxiety disorders more prevalent in adolescents who have a diagnosis of autism compared to typically developing adolescents.?

What questions should we be asking

15. What are non-drug treatment options for adolescents who have a comorbid diagnosis of autism and ADHD?
16. What are the common daily-life challenges experienced by girls and young women who have a diagnosis of autism?
17. Why are transition services important, and what is the federal law with regard to transition services?
18. What role does promoting self-determination play in efforts to promote more positive transition outcomes?
19. How has a focus on self-determination in special education services helped move the field toward more positive approaches?
20. How does promoting student involvement in transition planning promote self-determination and more positive transition outcomes?
21. What practices exist that could be used to promote the self-determination of youth and young adults who have a diagnosis of autism?
22. What practices exist that could be used to promote the involvement of youth and young adults in post-secondary transition planning?
23. What steps would better prepare students to play a more active role in their own transition planning? How might the practices of transition team members need to change to support this involvement?
24. To what extent are students accessing transition experiences marked by relevance, and relationships? What supports and opportunities would promote greater access?
25. What characteristics contribute to employment for young adults, and how could we prioritize a student’s transition plan to ensure that students acquire as many characteristics as possible?
26. What are evidence-based practices/predictors or research-based practices/predictors for individuals shown to increase employment outcomes.
27. What is the process for children/adolescents to qualify for special education services? In other words, some individuals will simply be considered not to need specialized instruction or curriculum modification
28. What program evaluation tools can be used to help schools incorporate evidence-based practices?
29. What factors should be considered when helping an individual choose an appropriate tertiary educational setting?

Delineating the impact of research on the lives of individuals with a diagnosis of autism

• 1. ) Research focused upon neurophysiological and causation domains of autism, represents neuroscientific and genetic efforts to delineate, for example, quantifiable biological markers.
• This type of research overall contributes to development of theories, models/paradigms and conceptual frameworks.
• 2.) Research of solution focused, psychological and psychiatric approaches represent efforts to develop innovative interventions and approaches.
• This type of research contributes to the possible implementation of evidence-based, developmentally informed, and manualized interventions to support programs that address the specific real-world needs and systemic issues experienced by individuals with a diagnosis of autism.

Defining Evidence-Based Practice (EBP)

The conscientious and judicious use of current best evidence in conjunction with clinical expertise and patient values that guide health care decisions. Best evidence includes empirical evidence from randomized controlled trials (RCTs); evidence from other scientific methods such as descriptive and qualitative research; as well as use of information from case reports, scientific principles, and expert opinion. When enough research evidence is available, the practice should be guided by research evidence in conjunction with clinical expertise and patient values. In some cases, however, a sufficient research base may not be available, and health care decision making is derived principally from non-research evidence sources such as expert opinion and scientific principles. As more research is done in a specific area, the research evidence must be incorporated into the EBP.

EBP for individuals who a diagnosis of autism

Acceptance-based approaches

• To date, mindfulness and acceptance-based interventions have been adapted in several studies with individuals who have a diagnosis of autism. Collectively studies involving modified MBCT with concurrent teen and parent groups found reductions in externalizing disorder symptoms among teens with developmental conditions, including participants on the autism.spectrum.
• MBCT has also been adapted for adults who have a diagnosis of autism, anxiety, and depressive symptoms; significant decreases in rumination, as well as in depressive and anxiety symptoms, overall have been found, when compared to a wait-list groups.
• In an adaptation of MBSR, teens who completed MYmind, while their parents completed concurrent mindful parenting sessions, showed increases in quality of life measures and decreased rumination for the teen participants. Also parents of teens who have a diagnosis of autism, who completed a mindfulness program, then (parents) trained their children in mindfulness practices over a 12 month period, showed (parent reports) increased mindfulness and decreased parent stress, as well as reduced anxiety in their children.
• To date, only one study has adapted ACT for individuals with a diagnosis of autism. In a school-based, six-week group intervention for students 13–21 years old, emotional distress, stress, and hyperactivity were significantly reduced, while increased prosocial behavior was also reported. Skills taught in the ACT group included strategies for coping with stressful situations, breaking avoidance patterns, and developing broader skills (e.g., examining one’s values in order to determine how to act in accordance with one’s values, practicing mindful awareness, and nonjudgmental acceptance of thoughts and feelings).

EBP for individuals who a diagnosis of autism

Cognitive Behavioral Therapy (CBT) - Modifications to Cognitive Behavioral Therapy for Autism Spectrum Disorder: Considerations for Adolescents

• Common trends in modifications of CBT for individuals who have a diagnosis of autism and anxiety include: - (1) development of disorder-specific hierarchies for anxiety treatment; (2) concrete visual tools and supports; (3) incorporation of specific interests into intervention and (4) inclusion of parents as part of the intervention.
• Disorder-specific hierarchies, which include goals related to the specific interfering anxiety symptoms, as well as targeting the social, communication, or self-care challenges that may impact the individual have been shown to be helpful.
• Social skills instruction has also been embedded into some anxiety interventions for adolescents because of the overlap with social difficulties and social fears. An example for a teen with social anxiety disorder may involve didactic instruction and role-play of appropriate conversational skills, as well as exposure to a hierarchy of feared social situations.
• Use of concrete, visual tools and supports to build on the strengths and learning profile of many individuals who have a diagnosis of autism have shown to be of value.
• Role-play and video modeling incorporated into therapeutic sessions to enhance hard-to-teach concepts, as well as examples of visual or concrete strategies including formal rules lists for targeted behavior, concrete and consistent session structure, setting digital reminders for session homework, and ongoing positive reinforcement are of benefit also.
• Incorporation of a special interests into the intervention has often been cited in the literature as a means to increase motivation for participation. Sharing as a regular part of the therapy can provide teens with a brief reprieve from the intensity of treatment, while simultaneously allowing the therapist and/or other group members to appreciate a teen’s strengths and interests.

Modifications to CBT: considerations for Adolescents

• Finally, increased parental involvement has also been cited in multiple studies of children and adolescents who have a diagnosis of ASD. Parents are encouraged (and in many cases required) to participate in CBT treatment via concurrent parent/youth groups, or through participation in individual CBT sessions along with their teens. Involvement of caregivers throughout the lifespan for children and adolescents is thought to increase the generalizability of core concepts, which is especially important given the inherent difficulties in generalization among individuals who have a diagnosis of autism.
• When considering CBT treatment for mental health conditions among emerging adults, many of the same modifications for youth apply. The following are highlighted: the importance of continuing to involve caregivers and other providers, using data and technology to supplement face-to-face therapies, actively supporting and managing executive functioning challenges(e.g., routines, reminders, checklists instead of generating ideas), utilizing multiple-purpose and simple coping thoughts (e.g., I can get through this,… No one is perfect), integrating social and problem-solving skills into treatment, and employing a flexible and personalized approach to treatment.
• Also, it is important to design adaptations that align with the developmental level of the adolescent. Graphics and topics used should be appealing to adolescents in order to inspire motivation for participation in treatment. Additionally, how parents are involved in the intervention has varied across adaptations. For instance, in the Facing Your Fears (FYF) program for youth and anxiety ages 8–14 parents are actively included in every session and frequently work together in dyads with their children for some session activities.
• In the adolescent version of FYF, parents attend every session, but direct work with teens occurs much less frequently, to respect the importance of their teens’ solving problems and working independently. Parental involvement may also provide opportunities to directly address important but potentially difficult-to-discuss concepts of parental overprotection and parental anxiety frequently seen among both parents of typically developing youth as well as parents of youth who have a diagnosis of autism and anxiety.

EBP- Anxiety in adolescents

• In brief, atypical anxiety symptoms are likely to be present in a substantial minority of children and adolescents who have a diagnosis of autism.
• To date, there have been at least 10 RCTs of anxiety interventions for children and adolescents with, a diagnosis of autism, all of which utilized modified CBT interventions.
• Participants in these studies ranged in age from five years old through adulthood, and although the majority of studies have focused on school-aged children, several studies have used modified CBT for teens who have a diagnosis of autism.
• Session numbers have varied from a low of six weekly sessions to a high of 32 sessions.
• Individual and group therapies have been utilized with studies that compared treatment modalities showing no significant differences with regard to treatment outcome.
• Parents were generally involved in the interventions, although the amount and type of involvement varied across studies. Well-established core components of CBT for anxiety, including psychoeducation, somatic management, cognitive restructuring, and graded exposure (e.g., being placed in anxiety-provoking situations of increasing intensity) characterize these interventions.
• The adolescent adaptation of Facing Your Fears (for teens 13–18) includes the following adaptations to its original 14-session family-focused group treatment: addition of a specific module for social skills, increased parent–adolescent collaboration to identify treatment goals, inclusion of technology via a personal digital assistant, less direct parental involvement in exposure practices and increased in-session exposure, and modifications to parental content to relate to adolescent development and challenges. Results of an initial pilot study showed significant reductions in anxiety severity, with close to 50% of participants classified as treatment responders.

EBP-Anxiety in adolescents

• Efficacy studies of anxiety treatment in autism have traditionally excluded obsessive-compulsive disorder (OCD) and PTSD, although several recent studies have been conducted solely with adolescents and adults who have a diagnosis of autism and co-occurring OCD. Similar to other CBT programs, treatment of OCD amongst individuals who have a diagnosis of autism has largely consisted of core CBT components, with the notable addition of exposure and response prevention (ERP), the most well-supported CBT component for treatment of OCD. Preliminary research with both adults and youth who have a diagnosis of autism and OCD indicate that significant reductions in OCD occurred following participation in CBT .
• Research on PTSD treatment among individuals who have a diagnosis of autism is notably lacking, despite evidence that children and adolescents who have a diagnosis of autism may be at higher risk for bullying and other traumatic experiences. Thus, given the paucity of research in this area, case studies as well as larger treatment trials are needed that focus on the development and delivery of efficacious interventions to manage PTSD in this population.

EBP-Technology and CBT

• As the world becomes more connected through the use of technology, therapists are now able to use exciting software and virtual methods of supporting clients. These advances in treatment can be especially important to supporting teens in need of evidence-based treatment. Adolescents may be uniquely suited to benefit from technology-based therapeutic interventions due to the shortage of specialists that treat autism, possible resistance to attending clinic-based therapy, and the financial and logistical barriers that may exist for many families who must juggle multiple appointments and obligations.
• Furthermore, telehealth and other tech-savvy modes of delivering therapy can also help fill the gap for much-needed mental health services for rural and under-served areas Smartphone apps, telehealth therapy, video games, and computer games are all examples of emerging technologies to deliver CBT for young people with various mental health needs.
• Studies indicate that internet-delivered CBT to youth yielded successful results in treating a wide variety of psychological (e.g., anxiety, depression, phobia) and with some research indicating electronic methods of delivery are just as effective as face-to-face CBT treatment of anxiety symptoms in teens.

EBP-Transdiagnostic treatments

• Another key area of future research in CBT for adolescents who have a diagnosis of autism is the use of transdiagnostic treatments. Benefits of transdiagnostic approaches include the potential to address underlying core constructs of psychiatric diagnoses and the power to apply the same treatment protocol to clients with varying clinical presentations.
• One example of a transdiagnostic construct being used in the treatment of co-occurring psychiatric conditions in autism is emotion regulation (ER) (the ability to recognize and manage emotions; ER difficulties are thought to be a common issue for individuals who have a diagnosis of autism and a potential underlying construct for the high rates of co-occurring mental health conditions.
• While treatment research targeting ER difficulties in autism is still in early stages, several small pilot studies have been completed. Studies of emotion regulation, CBT-based, and mindfulness treatments for younger children (ages ranges 5-12 years) who have a diagnosis of autism found better child ER, greater coping strategies, improved internalizing symptoms, less behavioral dysregulation, and improvements in adaptive behaviors.

Medical treatments for co-occurring conditions

• Research suggests that there are effective drug options available for commonly co-occurring psychiatric challenges, such as mood disorder, anxiety, attention-deficit hyperactivity disorder (ADHD), and disruptive behaviors, presenting in individuals with a diagnosis of autism.
• Mood disorder, anxiety, ADHD, and disruptive behaviors often present during the adolescent period and can be difficult for clinicians to accurately identify and effectively treat. In addition, issues such as sleep difficulties, catatonia, sexuality and related behaviors, gender identity, adaptive skills, and vocational skill issues often become an important focus of treatment as a child moves through adolescence. Effective treatment often requires a combination of both drug and non-drug treatment interventions, and it is essential to understand the complexity of the issues in order to reducing impairing symptoms and maximize the developmental potential, independence, and quality of life for adolescents who have a diagnosis of autism and co-occurring psychiatric challenges.
• In examining novel medical treatments, to date, no drug has been demonstrated to be effective for improving the core traits of autism (social-communicative behavior and restricted, repetitive behaviors) in children and adolescents in a replicated double-blind, placebo-controlled trial. As individuals with a diagnosis of autism vary significantly with regard to their language and communication skills, intellectual/cognitive functioning, and the severity of their social impairments, restricted interests, and repetitive and/or disruptive behaviors, it is imperative that future research continue to address the breadth of treatment needs in autism to improve outcomes and quality of life.

Self-determination theory (SDT)

The application of the core aspects of SDT - autonomy, competence and relatedness, may contribute to positive outcomes for individuals who have a diagnosis of autism, particularly within the transition from adolescence to young adulthood.

• On the whole, people are centrally concerned with motivation — how to motivate themselves, or others to act. Parents, educators, practitioners, trainers, coaches, employers and managers struggle with how to motivate those that they mentor, and individuals struggle to find energy, mobilize effort and persist at the tasks of life and work. People are often motivated by external factors such as reward systems, grades, evaluations, or the opinions they fear others might have of them. Yet, just as frequently, people are motivated from within, by interests, curiosity, care or abiding values. These intrinsic motivations are not necessarily externally rewarded or supported, but nonetheless they can sustain passions, creativity, and sustained efforts. The interplay between the extrinsic forces acting on persons and the intrinsic motives and needs inherent in human nature is the domain of Self-Determination Theory.
• Self-Determination Theory (SDT) is a broad framework for the study of human motivation and personality. SDT articulates a meta-theory for framing motivational studies, a formal theory that defines intrinsic and varied extrinsic sources of motivation, and a description of the roles of intrinsic and types of extrinsic motivation in cognitive and social development, and in individual differences. More importantly, SDT propositions also focus on how socio-cultural factors facilitate or undermine people’s sense of volition and initiative, in addition to their well-being and the quality of their performance. Conditions supporting the individual’s experience of autonomy, competence, and relatedness are argued to foster the most volitional and high quality forms of motivation and engagement for activities, including enhanced performance, persistence, and creativity. In addition, SDT proposes that the degree to which any of these three psychological needs is unsupported or thwarted within a social context will have a robust detrimental impact on wellness in that setting.
• The dynamics of psychological needs and support and also the thwarting of needs has been studied within families, classrooms, teams, organizations, clinics, and cultures using specific propositions detailed within SDT. The SDT framework thus has both broad and behavior-specific implications for understanding practices and structures that enhance versus diminish need satisfaction and the full functioning that follows from it.

Scaffolding change

1. Bridge the gap between research and practice
2. Strategic innovation at systemic levels
3. Implementation of best practice, monitoring of deliverables, collection of data and analysis of outcomes
4. Establish a Stakeholder Autism Advisory Board - Inclusive of individuals with lived experience of autism, practitioners, clinical experts, industry, educators and researchers

Targeted goals and approaches to scaffold change

1. Maximising potential
   • Urgent scaled-up implementation of targeted evidence-based interventions and solution-focused approaches.
   • Facilitate development and adaptive skills within socio-cultural contexts.
   • Systemic focus with involvement of family/ caregivers in approaches/ interventions
   • Improved individualised support in educational settings based on strengths and needs
   • Autism-specific training, mentoring and coaching for educators, workplace members / employers
   • Access to post-secondary transition services to further education and/ or workplace
2. Minimising barriers
   • Identify and minimise barriers that impact development and adaptation across all settings, including community, education and workplace
   • A focus upon socio-communicative capacities, sensory issues, psychosocial capacities, co-occurring physical and medical conditions
   • Coordination of tailored approaches by primary care physicians and multidisciplinary specialists
3. Optimising the person-environment fit
   • Develop autism-friendly contexts and environment adjustments to enhance adaptation
   • Adjustments to enhance environmental predictability and supporting development of self-determinism
   • Essential support for families/ carers including access to scientific knowledge, training, stress reduction, positive psychology and strength-based approaches.
   • Awareness to build understanding of autism, reduce misconceptions and stigma, and improve QOL across all contexts including a focus on acceptance by peers

Integrated framework to support individuals across the lifespan through multidisciplinary care

(Lai, Anagnostou, Wiznitzer, Allison, Baron-Cohen, 2020)

PEERS® Australia - who we are

• Our work is focused on building strengths, scaffolding self-determinism, celebrating neurodiversity and co-creating meaningful lives with individuals, but without ignoring or dismissing the real problems or issues that people experience.
• We also view the concept of the whole person and behaviours as a function of the person in interaction with the environment.
• We suggest that approaches to enhance developmental growth should be empirically proven, and to be implemented and evolve within a collaborative partnership with the individual. Also entering into a co-collaborative partnership should be one of choice for the individual.
• Our core goal is to co-facilitate best possible outcomes that align with the individual’s values without a desire to change unique qualities.
• We are a registered charity established in 2018. At the heart of our work, is the quality of life for individuals and their families. Our backgrounds comprise of coaching psychology, cognitive neuroscience, developmental science, and education. We have a number of volunteers who assist with a range of tasks with backgrounds in psychology, the arts, speech pathology, law, and business as individuals with a lived experience of autism.
• In January 2019, we hosted our first PEERS® Seminar in Australia to build social capacities for young people, by certifying providers under the training of Dr Laugeson (UCLA). The outcome of the Seminar enabled close to 100 providers across Australia to be certified in PEERS. The training enabled expansion of services nationally and contributed to delivery of best practice, sustainability and growth within this much-needed area.
• The Seminar also provided a platform to create innovation, to build partnerships with stakeholders, including families, educational organisations, government, media and industry, and to foster development of pathways for optimal service delivery. At the Seminar we advocated that engagement with individuals who have a diagnosis of autism and their families/ carers as central to understanding real-world strengths and challenges faced. Also, recognition of the unique capacities in individuals and broad outcomes within developmental, learning and societal domains are essential to conceptualize capacities for wellbeing, self-determinism, inclusion, and to create systemic change.

PEERS® Australia

• In 2020, we hosted two further trainings, leading to certification of over 300 providers. Attendees included Parents, Psychiatrists, Medical Practitioners, Nurses, Psychologists, Speech therapists, Occupational Therapists, Social workers, School Counsellors, Educators, Researchers, and Professors.
• In addition, we had a number of organisations send team members from ASPECT, Orygen, CAMHS, Headspace, Westmead Hospital, varying Public Health Departments, Autism Queensland, Autism Association of WA, Aspergers Victoria, Autism NZ, as well as a number of Independent schools, Government schools, and Catholic schools.
• Also we had international attendees from across the globe, including NZ, Asia, UK and Europe.
• We are currently exploring collaborative projects with UCLA, national universities and autism organizations to expand services for teens and young adults in Australia. We aim to engage with inclusive practice with individuals who have a diagnosis of autism and their families/carers as well as engage in partnership development with organizations, researchers, consultants, industry, government, and educators. In addition, engaging with service providers, educators, research specialists and industry, will assist us in understanding systemic processes that impact on development, and to form an overview of current practice in service delivery, educational systems, and employment opportunities.
• In 2019 we also collaborated on a television documentary on autism aired on the ABC . Dr Laugeson featured in the documentary alongside two of our team from PEERS Australia. The documentary named ‐Love on the Spectrum‐ was produced by award winning company, ‐Northern Pictures‐. The second series on Love on the Spectrum is now in production, following on from the success of Series 1 .

PEERS® Overview

• CBT-based interventions have been used to address the core challenges of autism. Research addressing social-communicative challenges such as conversational skills, friendship development skills, and emotional labeling and recognition have been conducted in individual, group and educational settings.
• The PEERS social skills program for adolescents and young adults utilizes such CBT strategies such as direct didactic instruction, role-play to learn new skills, and increased awareness and management of cognitions.
• PEERS groups focus on obtaining core social skills such as developing and maintaining friendships, improving conversational skills, entering and exiting group interactions, and handling teasing as well as losing when playing competitive games. Studies have demonstrated significant improvements in social ability following participation in the PEERS intervention.
• RCTs have shown improvements in social skills, social anxiety, depressive symptoms, and problem behaviors across several independent research groups with confirmatory EEG results and across cultural translations of the PEERS program. Sample sizes of these studies vary and have ranged from 28–79 participants.
• An adaptation of the PEERS program for young adults has also demonstrated improvements in social knowledge, empathy, anxiety, and loneliness.

Dr Elizabeth Laugeson, UCLA

Dr. Elizabeth Laugeson is an Associate Clinical Professor in the Department of Psychiatry and Biobehavioral Sciences at the UCLA Semel Institute and is a licensed clinical psychologist and is the Founder and Director of the UCLA PEERS® Clinic, which is an outpatient hospital-based program providing parent-assisted social skills training for individuals who have a diagnosis of autism and others with social challenges, across the lifespan. Also, Dr. Laugeson is the Training Director for the UCLA Tarjan Center for Excellence in Developmental Disabilities (UCEDD).

Dr. Laugeson has been a principal investigator and collaborator on a number of nationally funded studies investigating social skills training for youth with social challenges from preschool to early adulthood and is the co-developer of an evidence-based social skills intervention known as PEERS. Since 2010, she has authored four books related to social skills training including, The Science of Making Friends: Helping Socially Challenged Teens and Young Adults, Social Skills for Teenagers with Developmental and Autism Spectrum Conditions: The PEERS Treatment Manual, The PEERS Curriculum for School-Based Professionals: Social Skills Training for Adolescents with Autism Spectrum Conditions, and PEERS for Young Adults: Social Skills Training for Adults with Autism Spectrum Conditions and Other Social Challenges. She was a two-time recipient of the Ruth L. Kirschstein National Research Service Award from the National Institutes of Health in 2004 and 2006, the recipient of the Semel Scholar Award for Junior Faculty Career Development in 2008, and received the Distinguished Alumnus Award from Pepperdine University in 2010.

Having trained thousands of mental health professionals, educators, and families in the PEERS method, Dr. Laugeson is dedicated to developing and testing evidence-based treatments to improve social skills across the lifespan, and disseminating these empirically supported programs across the globe. At present, the PEERS manuals have been translated into at least 12 languages and the program is used in over 80 countries.

Dr. Laugeson has presented her ground-breaking research at international conferences throughout the world including the U.S., Canada, England, Finland, Holland, Spain, Italy, Australia, India, and China. Her work has been featured on national and international media outlets such as People Magazine, USA Today, the LA Times, New York Times, Washington Post, CBS, NBC, NPR, and Channel 4 in the United Kingdom.

Different perspectives

• ‐Despite extensive research, development of autism organisations, greater awareness and understanding of autism, this has sadly not led to improvements in the lives of people with autism.
• A recent study by Professor Baron-Cohen, a world expert on autism, shows autistic adults experience disproportionately more ‐negative life events‐, 45% of the 426 participants say they often lack money to meet basic needs (compared with 25% of non-autistic people) and 20% have been sexually abused by a partner (compared with 9%). The research, involving questionnaires created with autistic people, suggests why those with autism may experience more depression.
• Evidence has also shown the significant challenges facing autistic people. Diagnosis can take years; children face cuts to special educational needs provision; just 16% of autistic people had jobs in 2016 (compared with 80% of non-autistic people); and they are among those locked up in secure hospital-style units instead of living in communities.
• Many autistic people and their families will tell you that while the [government’s] autism strategy has raised awareness, nothing much has changed on the ground in the last 10 years. And, despite our research flagging up suicide risk and other kinds of vulnerability, too many autistic people are languishing unsupported because there’s no new money in social care for autism. This is unacceptable,‐ says Baron-Cohen.
• The old style of doing research was, without [us] realising it, arrogant, in that the scientists thought up the questions and then did it. The new way is to involve people from the outset … to codesign the studies, and check the relevance and wording.‐ Gaps between research and practice influenced plans for a #35m Autism Centre of Excellence by 2025. Aiming to be the UK’s first national clinical and research centre for autistic people, it will combine academic expertise with practical help. In theory, children or adults referred by a GP would get a diagnosis, then immediate support from specialists like psychiatrists, employment or benefits advisers. ‐Locally, we’ve got this research centre and world-famous university, and all around it people are sitting on waiting lists, unable to be seen, and they’re struggling, so it’s about closing that gap,‐ he explains‐.
• https://www.theguardian.com/society/2019/oct/02/simon-baron-cohen-autism-neurodiversity-brains-money

References and additional content

For references and additional content including PEERS®, Positive Psychology approaches, aetiology, genetics, neurobiology and cognitive neuroscience please contact PEERS® Australia.