ASD review
Layers of the vocational outcomes ecosystem: (Nicholas et al., 2017)
(i) who an individual 'is' (well-being) (ii) a sense of belonging in community (iii) opportunities to move forward in ways that are desired (sustained employment)
Where do the challenges for females with ASD mainly stem from?
**Social and cultural expectations specific to women Not being able to communicate with others Not receiving services due to their ASD being undetected Challenges from a co-occuring diagnosis on top of their ASD
*According to Gotham (2015), adults with ASD and their caregivers place the most emphasis on what as a priority for future research?*
**Societal understanding and acceptance Romantic relationships Causes of ASD Transportation access
The study by Nicholas et al. (2017) discusses a Canadian program called EmploymentWorks Canada (EWC) which is an example of the Ecosystem Framework for Employment. What are the components of an ecosystem framework?
**a. Individualized and experiential learning, individual goal setting, co-workers and peers as mentors and co-learners, and building employer, workplace and community capacity b. Group and inclusive learning, individual goal setting, and supervision by peers c. Individualized and experiential learning, early pre-vocational training, co-workers and peers as mentors and co-learners, and increasing community and workplace acceptance d. None of these answers are correct
Stakeholders in the ASD community (individuals with ASD and their caregivers) have rated which as most important to them in future study?
**public acceptance of ASD access to transportation romantic and friend relationships employment opportunities
Factors associated with greater odds of sustained employment: (Chan et al., 2018)
- **independent daily living skills - **inclusive school environment in early childhood - **currently living in an area with a larger population size - higher family income - larger maternal social network
implications for QoL measures for ASD adults (Ayer et al. 2017)
- ASD folx may value social experiences less than typicals - greater severity impacts folx ability to report QoL
Brown-Lavoie et al., 2014
- ASD indiv received less knowledge about sex from social sources (tv, radio, internet, porn), had less perceived and real knowledge, and had more victimization compared to peers - link between lack of knowledge and higher rates of victimization (not social sources or perceived knowledge)
conditions more common in typicals than in ASD (Croen et al. 2015)
- AUD/SUD - infection - genitourinary (urine)
adults services in NJ:
- Autism NJ - Boggs Center on Developmental Disabilities - ARC of NJ Planning fo Adult Life Program
Henninger and Taylor suggest more current research might see a shift to more positive outcomes for adults with ASD. Give one example the researchers discuss and why it might lead to more positive outcomes.
- Changing concept of adulthood because leaving home, going to college, getting married, and having a family are no longer the social norm. Therefore, other perspectives may lead to more positive outcomes when defining a "positive" outcome. - Advancement in early intervention therapies because we still don't know the long-term effects. Therefore, current treatments could improve outcomes of the generation that has not yet reached adulthood.
Daily living skills (DSLs) are discussed by Nicholas and Chan as being associated with employment outcomes for adults with ASD. What are examples of DLSs and how do they relate to employment?
- Examples are: personal hygiene, domestic skills, and money management (washing/bathing, grooming, dressing and undressing, toileting), housekeeping (making own bed, household tasks, doing errands, home repairs, laundry), meal preparation (preparing simple food, mixing and cooking, preparing complete meal, setting and clearing table, drinking from a cup, eating from a plate, washing dishes), and financial management (banking and managing daily finance) - Prerequisites for these skills are abilities including following directions, memory, planning, and organizing. All of which are highly valuable in the workplace. - Sample relationship- bad hygiene makes you less desirable employee; need to be able to count money to have any job with money
Multi-modal, comprehensive assessments:
- Inform understanding of strengths and challenges - Identify co-morbid medical or psychiatric disorders - Inform treatment plan
ind with ASD had the least knowledge about ____ in regard to sexual bx as compared to their peers
- STDs - appropriate sexual bx - puberty (more knowledge about hygiene)
Anderson et al. said academic skills may have been undervalued in their studies. Why is this important?
- a lot of comorbid conditions come from the academic side p. 1554 - most aren't in post-secondary school
functional performance aspects as part of structural equation modeling (Kirby, 2016)
- academics - self-care - social skills
training needs
- adult ASD needs - varying clinical presentation (challenging bx, mental health) - long term planning - family and sexuality
What is wrong with "autistic phenotypes"?
- aka impaired social-communication = autistic phenotype - Using ASD instruments to characterize non-ASD sample is an oversimplification of complex bx - And it fails to recognize that observable differences may result from different underlying mechanisms
considerations for assessment of ASD
- assessment of a typically presenting person is often differently focused - diagnosis is based on symptoms we can SEE, but many symptoms aren't specific to ASD - Can overlap with depression and anxiety assessments - Assessments are affected by age, language, IQ, psychiatric symptoms **High scores on ASD measures may not reflect only ASD severity
How do we support adults in career planning?
- availability of jobs/need for income - skill-based/avoid weakness - preferences/personality - real-life experience
Kanner 1971 findings
- boys more than girls - boys brought to clinic earlier than girls - biological component in ASD - bx was very similar at a young age; very different now - if they weren't placed in institutions, would they be more successful?
How to differentiate "adult" psychopathology?
- childhood psychology is focused on development, but adult is more about psychosis - there are different expectations and information now than there used to be
Croen et al. 2015 - health status
- children w ASD have higher rates of comorbid medical and psychiatric illness - nearly all medical conditions, rare and common, and major psychiatric disorders were more common in adults with ASD than in typicals
*Ecosystem approach and how it helps employment fpr people with ASD*
- community resource (housing, mental health, income, education, food), family support (transportation, income security, coordination), workplace capacity (job coaching), policy (mentorship, liason)
barriers to receiving healthcare
- corse ASD symptoms impede interactions - PCP training to support those w ASD - AASPIRE Healthcare Toolkit: designed for patients and providers
Ayers et al. 2017 - lit review quality of life
- current practice in quality of life: lower than typicals when measured w tools designed for the general pop (esp in [1] social inclusion and [2] interaction) - only one quality of life measure for ASD adults - a comprehensive ASD quality of life measure is needed; what aspects of life matter most
Proactively reducing risk
- disclosure/education - documentation of strengths - teaching skills to reduce: misunderstanding, harm, and underestimation
Nicholas et al. 2017 - Ecosystem Approach to Employment and Autism Spectrum Disorder
- ecosystem approach to employment (linked to individual readiness, community resources, family resources, workplace capacity, policy) - community based vocational resources can improve employment outcomes
positivity of late life ASD diagnosis
- explanation for bx - sense of relief (no more blame) - seeking support; informs treatment - increased validation of experiences - putting experiences into context - social network - increased self-worth
Why do adults have difficulty finding services?
- federal law (IDEA) mandating all children to receive a free and appropriate education - narrow eligibility - misassumption that adults don't need services
Why is employment considered a multi-contextual and dynamic phenomenon? (Nicholas et al.)
- focus on family supports - job might play to their specific strengths - ecosystem factors (not just one thing; so many variables that need to be taken into account for their success)
cons of later life dx of ASD
- frustration/anger about implications - stigma - your experiences may not match others' with ASD - lack of services
Øien et al. 2018
- gender dysphoria (used to be called gender identity disorder in DSM-IV; no longer focuses on the distress factor, more problem-focused and how to remedy the "mismatch") - perhaps recent changes in attitudes surrounding GD; only from western cultures - 8% w GD have ASD, but insufficient evidence to determine if GD is elevated in ASD
How do people with ASD get missed?
- historical context (expectations of children in the past are very different than today; social emotional development is way more monitored now) - misdiagnosis
why are adults diagnosed later in life?
- inaccurate reflection of childhood - co-occurring conditions - camouflaging
What is the ecosystem approach to employment? (Nicholas et al., 2017)
- individual readiness (personal traits, esp independence in daily living skills) - community resources - family resources - workplace capacity (acceptance) - public policy
health status implications (Croen et al. 2015)
- lack of access to preventative healthcare - mis-accurate reports of pain - tactile sensitivities interfere w medical appts - social isolation leads to psychiatric disorders - limited diet, education = barriers to exercise and healthy eating - gene linkage between ASD and some psychiatric disorders - medication side effects
"service cliff"
- loss of services as young adults exit high school
gender imbalance in ASD
- males are more at risk than women biologically - also, women are better at camouflaging - diagnostic criteria are often more suited toward men
which dimensions should we be thinking about in aging w ASD
- marriage/family - careers/retirement - opportunities for increasing autonomy another thought: life-satisfaction; should this be studied w the same measurements as typical adults use?
factors that prevent older adults from receiving a diagnosis (Roestrof et al. 2019)
- masking (esp in women) - co-existing conditions - diffs in cog abiliy, education, social function
methodological limitations to diagnosing women?
- most measurements are based on clinic sample and women are sometimes not highly represented - women present different symptoms than men sometimes
Sosnowy et al., 2019
- most success in friendships where atypical bx was normalized - reframing friendship; developing more accurate measures - methods used: trial and error, fitting social norms, role in social situations, observed peer bx, made friends with those w shared interests
Supports for post-secondary adults with ASD: Findings (Anderson et al., 2018)
- need for individualized academic supports Graduation rates for post-secondary students with ASD, however, are low
Sala et al. conclusions about sex ed programs
- need way more research/manuals (cause programs can't be systematically studied) - a focus on safety and bio --> a move toward pos aspects of sex and less heteronormative is needed
What a dx does not do:
- no answers - does not make people more understanding or improve relationships - doesn't define you: you're the same before and after diagnosis
young adult outcome aspects as part of structural equation modeling (Kirby, 2016)
- paid work - independent living - social participation
ASD adults have higher rates of physical/mental health issues vs. other patients in gen pop
- psychiatric dx - obesity - IBD - type 1 --> need to address barriers to health care access
whose expertise is it? Gillespie-Lynch et al. 2017
- ratings by ASD differed from those of non-ASD - disagree that you can outgrow ASD & that ASD are violent - agreed that ASD have empathy
community engagements and socialization
- relationship support - need to help adults to develop skills to be able to participate
what are some factors that contribute to challenges? (Anderson et al.)
- reluctance to disclose disability - large class size and more
what comes after dx as an adult?
- self-advocacy is determined by the level of acceptance/agreement/comfort of indiv. - psychoeducation
Paradiz 2017 direct positives of self-advocacy in ASD adults increase in:
- self-concept - leadership ability - sense of belonging *look at chart in article
key components of self-advocacy:
- self-determination - freedom to make mistakes - self- awareness and knowledge - understand laws - communication skills
Risks for sexual victimization in adults with ASD
- sexual interest - limited knowledge/experience - social deficits
Hartmann et al., 2019
- sexuality in ASD; want typical relationships - ASD indiv reported more privacy and more sexual victimization (at least 1 on average) than their parents reported *importance of self-report - many relied on parents for info; rates of fam comm were lower than normative samples
reasons co-occuring psychiatric condition in late life dx of ASD
- shared psychiatry - consequences of living with ASD - overlap in diagnostic material
Atkin & Tozer (2014) Personalisation, family relationships and autism: Conceptualising the role of adult siblings (social work field)
- sibling relationships are complex and constantly redefined. practitioners have trouble navigating this - focus on the productivity and fulfillment of family relationships x person-centered policy - practitioners felt it was the responsibility of the sibling to negotiate contact with their disabled brother or sister - siblings balance priorities of aging; parents aging; autonomy; etc. --> agencies don't build in that kind of support - service organisations had not attempted to understand what the person with autism wanted
Ways to help individuals in successful employment outcomes: (Nicholas et al., 2017)
- skill development and onsite exposure - co/worker peer role coaching
legal review of autism (Cohen et al., 2014)
- state autism insurance (coverage in all states up to 18 or 21 y.o.) - education - limitations of ABA - "intervention room" - risk of restraints - guardianship - Mathews Test is intended to prevent people from being taken over in guardianship if that isn't necessary; some states are much more cautious about this than other states
Sala et al.; barriers to intimacy for adults with ASD & ID
- stigma - difficulties navigating nuances of romantic interactions - risk for abuse leads to avoidance of this topic in caregivers (also: moral judgements) - hard to balance vulnerability w capacity to consent
strengths in post-secondary students with ASD (Anderson et al., 2018)
- strong memory - high level technical skills - intense interest in the subject they are studying
Four inter-related themes would seem relevant in helping policy and practice (Atkin & Tozer)
- strong sense of obligation as well as ambivalence - siblings' involvement is sensitive to how they negotiate and prioritise; family commitments are never quite fixed - adult siblings might have to reinvent and in some cases rediscover their relationship with their disabled siblings - normative assumptions about doing the 'right thing'
employment
- support throughout the process - frustration about lack of staff ability to identify jobs that take into account fit - benefits counseling (if you have a job, you might lose other benefits; income level access)
family background as part of structural equation modeling (Kirby, 2016)
- white race - income - mothers' education
What makes a strong self-advocacy program for individuals with disabilities according to Paradiz et. al.?
-Emphasis on communicating, acting, and decision-making -Opportunities to share views, be listened to, and make decisions -Freedom to make mistakes -Understanding of their laws & individual rights
*What are some of the factors that may pose difficulties for individuals with ASD in post-secondary education? (Anderson et al. 2019)*
-Non-inclusive teaching or evaluation (prevent students from demonstrating their knowledge) - reduced structure - larger class size - crowds may be a distraction and/or provoke anxiety - increased feelings of isolation and loneliness - decreased resources - reluctance to disclose disability - unpredictability of university life - need for independent time-management skills
1
1
The prevalence rate for autism spectrum disorder
1 in 59
*What is the approach used by autistic individuals to cope with the need of adhering to social norms*
1. Seeking for professional services 2. Self-education through internet 3. Modifying behavior using trial-and-error approach** 4. None of above
3 levels of mental health assessment
1. broadband 2. specific screeners 3. diagnostic interviews
What are two reasons that it is important to break social functioning (or other broad constructs) down into multiple components? Give examples to support your answer.
1. each of these component are complex/multifaceted. Ex. social motivation is comprised of at least 5 different constructs, including: - prioritizing and attending to social stimuli (social orienting) - endorsing an interest in inter- action (social interest) - seeking out social interaction (social approach) - taking pleasure in interactions (social liking) - engaging in relationships with others over a sustained period of time (social maintaining) 2. break down complex constructs helps to identify potential treatment targets- if you're having difficulty making/maintaining relationships b/c you're socially anxious or struggle w social cognition. - CBT - mindfulness-based therapy [MORE]
Which of the following is not one of the challenges that Pallathra et al. 2019 point out about conducting methodologically rigorous studies of social skills interventions?
1. lack of well-validated, reliable measures of diff components of social function in adults 2. difficulty assessing gen of treatment gains (social function in real world) **3. not enough autistic adults who want to participate in treatment research** 4. designing studies w sufficient statistical power that are representative of the population
Roestorf et al. 2019 - consequences of aging - key questions that need to be identified in future research:
1. medical and developmental history (how to ask these qs) 2. core cog functioning - what does it look like 3. which comorbid conditions should be addressed 4. side effects of meds as adults age?
3 ways ASD indiv. camouflage
1. mimicking 2. suppressing bx like stereotypy 3. forcing themselves to pick up on nonverbal cues (eye contact)
enduring caregiving roles can lead to social exclusion in three ways: (Marsack & Perry, 2017)
1. misunderstanding of ASD and stigma (assumptions that bx reflects parenting) 2. complexity of caregiving roles (balancing other sibs; different experience as compared with peers - roles aren't changing) 3. impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers - also, pos. changes - patience, perspective, gains
Four components that could affect social functioning in ASD Pallathra (2018)
1. social motivation 2. social anxiety 3. social cognition (the abilities to identify and interpret verbal and nonverbal social information) 4. social skills
According to The Psychophysiological Mechanisms of Alexithymia in Autism Spectrum Disorder by Gaigg and colleagues, what percentage range is most accurate regarding the affect alexithymia has on individuals with Autism Spectrum Disorder?
40-50%
According to Roestorf et. al. regarding older adult ASD research, what age+ was thought to be a good starting point for research?
50+
12. According to Gotham, et al., what was the top priority for future research for both those who self-reported and those who were legally represented?
A) Romantic relationships B) Understanding/acceptance of adults with ASD C) Education D) Employment
Which of the following is FALSE about why it is important to think holistically about I/DD services?
A) Very few studies have explored related domains of life B) The various parts of our lives are all interconnected C) It allows researchers to know where adults with ASD's living situation, level of satisfaction/welfare, and their opportunities to make choices D) ASD is very homogenous and effects everyone in the same areas
Many adolescents and young adults with ASD have the potential to experience an increased risk of sexual violence and victimization. What are the potential risks?
A. Age appropriate sexual motivation and interest B. Limited sexual knowledge and experiences C. Additional social deficits D. A and B E. B and C F. All of the above**
*In working with adults with ASD, what are the strategies used to help support ASD adults develop friendships that accommodate their individual characteristics?*
A. By using mainstream standards of behavior B. Using experiences, common interests, accepting social differences. ** C. Cognitive Behavior Therapy D. None of the above
What are some reasons why there has been an increased attention towards topics on sexuality and gender related issues among the ASD population?
A. Family communication B. Training workshops for supporters and ASD adults C. Internet and technology D. Social media E. Both C & D**
major psychiatric disorders comorbid (Croen et al. 2015)
ADD depression (perhaps under diagnosed) anxiety biopolar OCD SZ (esp women) suicide attempts (5x) *cancer risk lower (may be altered in autism)
Sasson & Morrison 2019 TD's first impression of an indiv. with ASD are MORE favorable when:
ASD diagnosis is disclosed
*Why in some cases does an ASD diagnosis in adulthood bring positivity?*
ASD indicators have improved by the time they're adults **It gives an alternate explanation for their behavior There are subtle difficulties and no significant developmental delays They can now "camouflage" their behavior
Prevalence and comorbidity in adults w ASD
About one third are minimally verbal About one third psychiatric About half are overweight
In the Gaigg et al., 2018 study, what conclusion did the researchers attain when comparing Bermond-Vorst Alexithymia Questionnaire (BVAQ) score and the association of objective and subjective measures of arousal?
An inverse relationship in which a higher BVAQ score correlated with lower physiological arousal
The results of the Cage et al., 2018 study showed that external sources of acceptance can have effects on mental health for people with ASD. List two possible effects:
Answer 1: Lower levels of social acceptance over the past week is correlated with higher levels of depression. Answer 2: Lower levels of social acceptance can encourage camouflaging behavior, which can predict higher levels of depression. Answer 3: When individuals with ASD perceive less autism acceptance from the community, they may become more stressed.
75% of people with Autism receiving services from the Developmental Disability services report receiving all the services they need. Why might this percentage be misleading?
Approval Bias. Not knowing what services are available that they are not receiving. Discontinuing unsatisfactory services.
Adaptability: what is it and why is is important?
BX --> IMPAIRMENT --> DX - environment affects how adaptable people are - increasing adaptability is not about changing a person, rather intervening to support future achievements - symptom + adaptability = strength
*Which of the following is NOT a benefit to youth with autism understanding and sharing what they experience physiologically as stated by Paradiz et. al.?*
Being able to express medical needs at home and in clinical settings Being able to engage in better self-directed medical care as they become adults Being able to know when they are experiencing agitation or discomfort Being able to enhance their leadership skills across life domains**
CCT vs. RCT
CCT does not involve random assignment to groups as an RCT does; therefore you may have a selection bias in who is assigned to treatment vs. nontreatment group (Depends on the study criteria and how it is done)
Why is it important for adults who have gone undiagnosed to be diagnosed in adulthood?
Can lead to positive change in areas of social impairment and social inclusion. They can seek support. Explanation provides relief, blame condition and not themselves. Adjustments can be made to improve their interactions
Where do camouflaging techniques come from?
Careful observation of peers, reading novels and psychology books, imitating fictional characters, and trial and error learning in social situations
According to the Nicholas et al (2017) article, why would an adult with ASD, who has difficulties with social communication, have a difficult time obtaining as well as maintaining a job?
Communication skills are crucial in order to be successful in an interview. Communication skills remain crucial once one has the job, because you need to communicate with supervisors, co-workers, and in some cases customers.
*What are some ways to change outcome measures to more accurately determine positive versus negative "outcomes" for adults with ASD?*
Criteria based on independence; Take into account how the individual experiences independence; Is independence congruent with the individual's desires and functional abilities?; Focus more on qualitative responses
*What are some of the limitations with comparing ASD outcome studies across decades?*
Criteria for success has changed over time, ASD diagnosis has changed over time, (classical Autism v. ASD).
ASD only becomes apparent between 2-3 y.o.
FALSE - recommends screening between 18-24mo
Leo Kanner
First person to describe and study Autism in 1943
According to the Nicholas et al (2017) article and the employment ecosystem, what are the mediators to employment for adults with ASD?
Gender, Family, and Social skills Family, Formal agency supports, Community supports, and Workplace elements ** Household income, Job preferences, and Graduation from high school Job access, Family, Social skills, and Food preferences
Which of the following is false in regards to Brown-Lavoie, et al. findings on sexual victimization in individuals with ASD?
Individuals with ASD were 2-3 times more likely to experience sexual victimization Lower levels of actual knowledge contribute to increased sexual victimization Women with ASD were more likely than males to be victimized** Few programs exist to provide guidance in sexuality education for individuals with ASD
What change in ASD outcome research occurred in the early 2000s?
Interventions began to show large impacts. **Studies began to focus on reliable and quantifiable data. The DSM-IV-TR was released, narrowing the definition and improving the identification of autism Success in adulthood was redefined to simply avoiding institutionalization.
What can the Adult Consumer Survey be used for individuals with intellectual or developmental disabilities?
It can be used as a comparison of how DD service systems perform across the states.
"the lost generation"
Lai &Baron-Cohen - people previously excluded from classic ASD dx - mis-dx; diff expectations; symptoms manifest later --> now, we don't know how symptoms manifest in older adults due to this (kids w ASD change, so so should adults)
There are changes in symptoms from childhood to adulthood; so why do adults still meet diagnostic criteria?
Limited success in ameliorating core ASD symptoms with behavioral or pharmacological interventions; treatments often target observable symptoms
According to the Chan et al (2017) article, what are the most powerful predictors of sustained paid employment of adults with ASD and co-occurring intellectual disability?
Living in an area with larger population size Participating in inclusive education as a child and having more independent daily living skills Living in a family with low SES and having extensive maternal social connections A and B **
What strategies were used by individuals with ASD to form friendships/social relationships according to Sosnowy, et al.?
Modifying behaviors to fit social norms · Trial and error · Identifying a role in social situations · Observing behavior of peers · Finding friends who accept their social differences/atypical behavior · Make friends with individuals with ASD · Make friends with individuals with shared interests
According to the Sexual Experiences Survey (SES), it was found that individuals with ASD
Obtain less of their sexual knowledge from social sources and more from non-social sources. Have less perceived and actual sexual knowledge. Experience more sexual victimization than individuals without ASD. All of the above**
Which of the following are challenges in diagnosing ASD in adults?
Other informants may not be around and information from those that are may be inaccurate Patients may have learned coping and camouflaging ASD might be overshadowed by co-occurring psychological or medical disorders All of these pose challenges**
What dimension did the qualitative responses in the Cage et al., 2018 study enable the researchers to identify in the majority of adults with Autism Spectrum Disorder?
Participants exhibited camouflaging which contributed to mental illness and severely affected their psychological well-being.
In your own words summarize the results of the semi structured interviews with 20 young adults on the autism spectrum about their lives after high school.
Participants had the most success in relationships in which their atypical behavior was normalized. Specifically, this occurred among friends who accepted and appreciated their social differences and through common interests where these differences were not a concern. In other relationships, participants felt that they were expected to adhere to social norms, but found it uncomfortable and/or were not sure how to act in some contexts. Therefore, finding friends who did not expect this was a welcome relief. Participants who were socially isolated wanted more opportunities to meet other people, such as organized social groups, but were not sure how to access these. Participants had struggled to make friends during their school years and some continued to do so after high school. They identified ongoing challenges with social relationships and/or a lack of opportunities to socialize as the major barriers. They also described persistent efforts to make friends using a trial-and-error approach, some of which had paid off. Friendships stemmed from finding people who accepted their social differences, finding others on the autism spectrum, sharing identities other than being on the autism spectrum, and common interests where their autism was not necessarily a central concern.
Although the participants in the autism spectrum disorder (ASD) group produced higher scores on the SRS-2-ASR than the anxiety disorder (ANX) and typical comparison (TYP) groups, what was an issue with validity in the South et al., 2017 study?
Participants in the ANX group produced anxiety scores that could function as a clinical diagnosis for Autism Spectrum Disorder.
The Gillespie-Lynch study used an online survey to assess autism knowledge and stigma. They noted, "reliance on convenience sample of people who were willing and able to participate in a hour-long survey for no compensation limits the generalizability of these findings." Which of the following is not a limitation related to their methodology?
Participants provide more neg viewpoints when they are anonymous (this might not be true/it might be a strength even)
What are some of the challenges associated with the identification of autism spectrum conditions in girls and women? What are some examples of ways females may present that differs from males?
Perpetuation of incorrect myths. Example: If a woman can make conversation and eye contact or if a woman is married or a mother, she must not have autism. This ignores coping and camouflaging skills. Clinicians are not aware of how the presentation of autism may differ between genders. For women with autism spectrum conditions, they may show more interests involving people (following a pop group, cartoons, literature) or animals instead of having interests involving objects, as males typically do.
According to the Chan et al (2017) article, why should the daily living skill of managing personal hygiene be a main target of intervention for those with ASD and co-occurring intellectual disabilities?
Personal hygiene was the daily living skill most strongly related to employment stability for those with ASD and co-occurring intellectual disability.
PEERS
Program for Education and Enrichment of Relational Skills for Young Adults - must be socially motivated - involves a social coach to facilitate skills outside the clinic covers (some examples): - app convo skills - app friends - app use of electronic communication - humor - how to handle bullying *super available (anyone can get the manual) * first RCT to show efficacy
In your own words explain why qualitative studies of lived experiences of individuals with co-occurring ASD and GD are vital:
Qualitative studies of lived experiences of individuals with co-occurring ASD and GD are vital to provide a better understanding and insight into these multifaceted experiences and conditions. This may in turn influence guidance practices and better prepare the help-apparatus for a group that are at risk for mental health problems.
How is camouflaging described qualitatively in the Lai et. al. article?
Qualitatively, camouflaging includes hiding and controlling stereotypical or inappropriate behaviors, mimicking neurotypical peers' behaviors, and forcing to make eye contact with others. It also is described as engaging in scripted conversations to get through small talk or to make chatting pleasurable for social partners.
What are three mental health conditions with the highest rate of co-occurrence in people with ASD, as compared to the general population?
SZ anxiety depression
*Many studies mention self-reporting to have limitations to ASD studies. Many studies also mention pros and cons to caregiver interview/surveys. What is one con and one pro to each research method?*
Self-reporting pros - we get to/should hear from those who are directly affected Self-reporting cons - bias due to ASD population possibly having more difficult time describing their emotions, thoughts, and feelings or having limited insight; can only know what participant wants to share; are limited in knowledge based on questions asked and options provided Caregiver pros - can identify different perspective or include issues individuals with ASD may not Caregiver cons - could be really stressed out and focusing on negative; could really care for child and give too positive answers; are also still limited in knowledge based on questions asked and options provided
*What are some reasons for co-occurring psychiatric disorders in adults with autism?*
Shared pathophysiology or cause, consequences of living with ASD conditions, shared or overlapping symptoms dimensions and underlying mechanisms, and overlapping diagnostic criteria.
*According to Brown-Lavoie et al, what are the potential reasons that individual with ASD obtain less of their sexual knowledge from social sources?*
Social deficits associated with ASD and social isolation may interfere with important opportunities for gaining correct sexual knowledge from social sources. In addition, parents of individuals with ASD lack confidence in discussing sexual-related topics for fear that such conversation will increase adolescents' sexual interest or behaviors.
*According to Ayres et al. In studies that reported individual domain scores, QoL tended to be reported as pervasively lower for autistic adults and to be notably low in domains capturing...?*
Social relationships integration **both A & B None of the above
Important dimensions of ASD
Social-communication Language (pattern of onset; receptive ability) Cognitive (IQ; EF) Emotion ("comorbidities;" personality) Restricted / repetitive bx
What are some possible factors that impact mental health in individuals with autism?
Some possible factors that impact mental health in autism are, lack of understanding of ASD in others, which sometimes leaves others to make assumptions that are not accurate. Another factor is an individual's experiences and perception of autism acceptance. And a third factor is sensory sensitivities, which impacts anxiety in adults with autism.
*Describe how the act of "masking" or "camouflaging" could relate to higher rates of depression in adults with ASD?*
Stress from trying to "fit in" with non-autistic populations, feelings of lack of acceptance from having to "hide" their true selves
*Croen et al. found that ASD adults had higher rates for most psychiatric and chronic medical conditions compared to controls. However, ASD adults showed lower rates of alcohol abuse/dependency, infections, and genitourinary disorders. Why might this be?*
Such conditions have a major social factor (i.e., drinking in social situations/functions, getting infections when interacting with other people, genitourinary disorders obtained through sexual contact/intimacy), meaning ASD adults are less prone to develop them as they have less likely to have social interactions.
Camouflaging comprises of various masking and compensation techniques. List three common ways in which individuals with ASD may camouflage their symptoms.
Suppressing and controlling behaviors associated with autism that were inappropriate in the situation (i.e. reducing repetitive behavior) Mimicking or "performing" neurotypical peers behavior during social interaction Forcing oneself to maintain eye contact and other non-verbal communication (i.e. displaying facial expressions/emotions of interest) Deriving rules/guidelines and scripting conversation with others accordingly to get through small talk or to make social chats more enjoyable for their social partners.
Bidirectionality of social impairments in ASD (Sasson 2019)
TD's judgements & ASD social skills both effect the stereotypes of social impairments - psycho-education and TD accommodations are needed
*Explain what makes the earliest studies for individuals with ASD different from the more recent studies of the issue (starting from the 2000s onwards)*
The earliest studies have vague and unreliable scales of what is the outcome for people with Autism, while the studies conducted from the early 2000s to now have more rigorous and empirical measures with the use of independence in residential placement, employment, and relationships as a basis for these studies.
In the Hartmann et al. article (Sexuality in the Autism Spectrum Study (SASS): Reports from young Adults and Parents, (2019) what are the 3 major themes of their study?
The first aim of the study was to replicate and expand upon previous literature on sexuality in ASD by characterizing sexuality, sexual experience, and sexual knowledge in young adults with ASD and their parents. The study explored gaps and unexamined topics regarding parent and young adult perspectives on more specific topics of interest including, sexual interests, sexual behaviors, current method of sex education, and sexual orientation. Second, the study intended to demonstrate a novel approach examining communication about sexuality between young adults and their patents. Third, examine how young adults with ASD and their parents compare on sexuality topics including the young adult's sexual behavior, experiences, and knowledge, as well as communication about sex. Note - (this includes victimization and inappropriate aggressive behavior).
In the Ayres et al. article, the authors note a lack of standard measures of QoL designed for or validated with ASD adults. They mention two possible approaches for developing such measures: adapting an existing QoL measure or creating an entirely new one. Which approach would you pick, and why?
The former would allow access to an existing framework and have the significant benefit of control data from a neurotypical population being available, while the latter allows greater freedom to fully incorporate the views and experiences of adults on the autism spectrum and those people who know them well.
What strategies would be helpful when trying to foster positive outcomes regarding sexual behavior, experiences, knowledge, communication, and decreased sexual victimization?
The research done in this study by Hartmann et al., (2019) reveal increasing family communication and information about sex is valued by both young adults and parents and may be an effective means to increase sexual knowledge and decrease the instance of sexually inappropriate behavior and victimization. This involvement also has the potential in alleviating the discrepancy between parents and young adults' reports regarding adult's sexual behavior and knowledge.
*According to Ayres et al., research shows that individuals who have ASD in Israel had significantly increased self-reported QOL (quality of life) after 6 months of being integrated into the army. However, the outcome is not the same when done in a country where military service is not mandatory once you turn 18. Why do you think it is successful in a country like Israel and when/how does autism successfully mix with army involvement?*
This is good support for how important inclusion is in autism and proof that if a certain activity is the norm of that culture, no matter what the activity is.... (dangerous, fun, sad, happy), An individual with autism will benefit heavily in terms of quality of life from simply being included.
More positive sexual experiences were found in -
Those who had lower ASD symptomatology, as measured by the Autism Spectrum Quotient. ** Those who had Low to medium level ASD symptomatology as measured by the PWID study. More females than males with ASD without co-occurring intellectual disability.
Adults with ASD who have co-occurring ID are at greater risk for unemployment than adults with ASD with average IQ scores (Chan et al., 2018)
True
Community engagement is critical.
True - a lot of focus is on "where will they go?" instead of "how will they participate in the community?" - increased social isolation contributes to poor mental health
Assessments are needed to help us be more specific in skill levels for adults with ASD.
True (especially for people who don't "fit") - helps provide a profile which helps communicate what ASD is for a specific person; this can counter stereotypes
*According to the Anderson et al (2019) article, what are some difficulties a student with ASD may face in a postsecondary education setting?*
Understanding abstract thoughts Unpredictability of university life Distractions due to larger class size and crowds All of the above**
A study comparing rates of sexual victimization between people with intellectual disability (PWID) and a community comparison group found that -
Young adults with ASD are often learning about sexuality on their own. Lack of formal education about sexuality and reliance upon non-social and non-professional sources for sexual information may contribute to young adults with ASD receiving inadequate and/or inaccurate information. PWID were almost 6 times as likely to experience sexual victimization.**
An individual with ASD who qualifies for state developmentally disabled services as an adult tends to have:
a) All their services met b) A lower level of cognitive and functional impairments c) A higher level of cognitive and functional impairments** d) A paid job in the community
The outcome for children with ASD should have a criterion based on:
a) Infantile psychosis b) Independence in employment** c) Their social skills d) Both b and c
When an individual with autism is looking for a friend, what do they look for the most?
a) One that will help them fit in with social norms b) One that will accept their traits and make them feel comfortable** c) One that has somewhat different social interests d) All of the above
*What were some of the differences found between the self-reporting subsamples (SR) and the legally represented subsamples (LR) in the paper by Gotham et al. (2015)?*
a) The LR group is thought to represent less cognitively able adults in comparison to the SR group. b) Both the SR group and the LR group placed priority on improving health care access and current treatments. c) Both SR group and LR group placed priority on increasing understanding and acceptance of adults with ASD. (reference table 6, pg. 802) d) All of the above**
*Which of these receives the lowest funding in terms of research on autism?*
a) Vocational skills b) Lifespan issues* c) Societal acceptance d) Mental and emotional health
According to Sasson and Morrison's (2019) findings, a typically developing (TD) individual's first impressions of an individual with ASD are much more favorable when:
a. ASD diagnosis is disclosed** b. ASD diagnosis is withheld c. ASD diagnosis is mislabeled d. Schizophrenia diagnosis is disclosed
Which of the following is true regarding brain activations of the ventromedial prefrontal cortex (vmPFC) and right temporoparietal junction (RTPJ; from Lai et al., 2018)?
a. ASD males have GREATER activations in the vmPFC and RTPJ regions b. ASD females have GREATER activations in the vmPFC and RTPJ regions c. ASD females have GREATER activations in the vmPFC, but not the RTPJ region d. ASD males have LOWER activations in the vmPFC and RTPJ regions e. C and D**
*Studying alexithymia is important because:*
a. All people with ASD are also diagnosed with alexithymia b. Difficulties with identifying and describing emotions are not a feature of ASD, but a feature of co-morbid alexithymia c. People with ASD commonly seek treatment for comorbid mental health difficulties, such as anxiety and depression, and alexithymia can have negative impacts on psychotherapy. d. B & C**
*According to Sasson and Morrison's (2017) work on first impressions, individuals with ASD were perceived significantly more negatively than their typically-developing peers by other typically-developing individuals in which category?*
a. Awkwardness b. Wanting to Live Near Them c. Attractiveness d. A and C** e. All of the Above
What is the benefit of learning self-advocacy skills for individuals with autism according to Paradiz et. al.?
a. Better outcomes in adult life b. Increased communication & interpersonal relationships c. Able to identify & address everyday needs & long-term goals d. All of the above**
*What is the concept of bidirectionality with regards to the social impairments that ASD individuals face with their typically-developing peers? Why is it important for us to acknowledge this bidirectional relationship?*
a. Bidirectionality meaning that social outcomes result from both the ASD individual's social abilities AND the typically-developing individual's perceptions and judgments of the ASD individual b. Bidirectionality refers to the issue being RELATIONAL instead of INDIVIDUAL. So, while we can take steps to improve the social outcomes of individuals with ASD through focusing on this individual, we must also acknowledge that typically-developing individuals need to be educated better in order to better understand and be able to interpret mental states of their peers with ASD. Individuals with ASD present their emotions differently, and if both the individuals with ASD and the typically-developing individuals learn new skills, this may lead to a much better social outcome.
In the article by Roestorf et al., Special Interest Group meetings focused on three priorities for Aging and ASD. Which of the following was NOT listed as a priority?
a. Cognitive aging in ASD b. Later life autistic traits and diagnosis of ASD c. Neurocognitive differences in aging ASD individuals** d. Treatment and care of older adults
*According to Henninger and Taylor, what aspect of measuring ASD outcomes was missing from early studies (pre early 2000s)?*
a. Consideration of the fit between the individual and their environment** b. Focus on employment c. Defining criteria with labels like "good, fair, poor, and very poor" d. Inclusion of IQ and language development
Adults with autism have significantly increased rates for all of the following psychiatric disorders except?
a. Depression b. Bipolar disorder c. Obsessive-compulsive disorder, d. Parkinson's disease**
What are some of the challenges associated with first diagnosis of autism spectrum conditions in adults?
a. Difficulty obtaining developmental history from caretakers b. Acquisition of camouflaging strategies in adulthood c. High frequency of co-occurring disorders d. All of the above **
*What factors contribute to comorbid mental health issues in individuals with ASD?*
a. External factors b. Sensory sensitivity c. Intolerance to uncertainty (all)**
Which of the following is NOT part of the Integrated self-advocacy (ISA) curriculum which emphasizes self-awareness (from Paradiz et al., 2017)?
a. Gaining knowledge about an individual's diagnosis and needs b. Learning Communication Skills c. Gaining knowledge about an individual's interests and skills d. Learning leadership skills**
*According to Chan et al. (2017), what was the most powerful predictor(s) of sustained employment in adults with ASD and co-occurring intellectual disabilities?*
a. Living currently in an area with large population size b. Having participated in inclusive education as a child c. Having more independent daily living skills d. All of the above**
What are some of the challenges associated with recognition and diagnosis of autism spectrum conditions specifically in females?
a. Many studies include participants recruited directly from autism clinics b. Males and females are compared using the same standards c. Females tend to have more disorders that present with similar symptoms to autism than males d. Both A and B**
*In the studies cited by Ayres et al. comparing quality of life (QoL) scores between autistic adults and neurotypical controls, in which of the following domains of QoL did autistic adults score notably lower than neurotypical adults?*
a. Physical health b. Mental health c. Social relationships** d. Employment
Which is not part of the SEVEN tools were used to assess QoL of adults on the autism spectrum?
a. Quality of Life Questionnaire b. Complex Quality of Life Questionnaire** c. Quality of Life Inventory d. World Health Organization Quality of Life-BREF
In the Sasson et. al. study, what disorder was used to mislabel participants besides ASD?
a. Schizophrenia** b. Bipolar disorder c. Depression d. Generalized anxiety disorder
Which of the following is not a disadvantage associated with camouflaging?
a. Sense of confusion about identity b. Lack of original interests** c. Prioritizing fitting in over own needs may lead to being manipulated d. Others may not notice need for help
What are some of the challenges associated with aging in those who have autism spectrum disorder?
a. Spatial orientation and navigation b. Employment c. Remembering a doctor's appointment d. All of the above**
According to Lai et. al., what is an example of shallow compensation in regards to camouflaging?
a. Staying quiet in a conversation b. Avoiding any conversations c. Excessive over-talking in a conversation** d. Avoiding eye contact in a conversation
Anderson and her peers (2019) conducted a systematic review of studies on interventions for post-secondary students with ASD. Which of the following statements accurately describes the 24 studies that were ultimately reviewed?
a. The majority of studies were experimental in nature but were deemed "low quality" due to limited data. b. The majority of studies were quasi-experimental or pre-experimental, and all were deemed "high quality". **c. The overall quality of the studies was poor, but they provide preliminary ideas about interventions that may be successful. d. The majority of studies were deemed "high quality" and provided clear cause-and-effect relationships between interventions and improved outcomes.
Kanner 1971 follow-up study; pathognomonic characteristics:
a. inability to relate themselves to people and situations b. anxiously obsessive desire for sameness - early infantile autism was added to nomenclature - however, autism was not in DSM II, and was classified under SZ
Sensitivity
ability to identify the group that you are trying to identify; proportion of people with ASD above the cut off out of the total number of people with that diagnosis ex. would have a perfect instrument of measurement if you have 100% sensitivity
Specificity
ability to rule out the group that you are not trying to pick up; proportion of who don't have autism who fall below the cut off out of the total number of people who don't have autism ex. would have a perfect instrument of measurement if you have 100% specificity
Prevalence of ID w ASD in children
about one third of children
Developmental disability (DD) services:
always include people with an ASD diagnosis as eligible to receive services only receive their funding through state sources **are regulated differently depending on the state they are based in focus only on community-based programming
how to help social exclusion of lifelong caregivers (Marsakc & Perry, 2017)
education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care.
"low functioning":
emphasizes challenges and ignores strengths or opps for growth
Employment is often viewed within a linear relationship between the employer and the employee. Yet for some with ASD, _____ (Nicholas et al., 2017)
employment is mediated by support from a family member or other by offering facilitative or stabilizing role.
How can adaptability make a difference?
ex. difficultly making small talk --> upset when interruptions occur --> instead; accurate at filing and works well alone
According to Sosnowy et al. 2019, what is wrong with current interventions and approaches for ASD?
falls short because they assume this population's differences, strengths, preferences, and support needs are the same as typically developing individuals. Understanding friendship from their perspectives can help for better future research, service delivery, and outcomes.
Kirby (2016) Parent Expectations Mediate Outcomes for Young Adults with Autism Spectrum Disorder
family background (white race, income, mother's education) and functional performance (academics, self care and social skills) variables significantly predicted parent expectations (expect paid work & independent living) which significantly predicted outcomes for adults with ASD
gender differences in health status (Croen et al. 2015)
gender diff in ASD reflected gen pop
Comorbidity in children w ASD
high rates of at least one comorbid dx - almost half have 2 additional diagnoses
"high functioning":
highlights strengths yet ignore potential need for services
medical conditions comorbid (Croen et al. 2015)
immune conditions GI disorders sleep disorders seizure obesity dyslipidemia hypertension diabetes
*According to the Adult Consumer Survey (ACS), most adults with autism spectrum disorder (ASD) live:*
in an institution with parents or relatives** in a group home independently
What is central to sustaining employment for adults with ASD and ID? (Chan et al., 2018)
independence in daily living skills, esp managing personal hygiene - also, meal preparation and housekeeping skills
According to the Croen et al. study, how many adults with ASD were diagnosed with a comorbid psychiatric disorder?
just above 50%
Lai 2018 camouflaging
link between neural self-representation and social coping in ASD women (they are better at camouflaging than men are); their responses were the same as typically developing women
why should you not rely on p values?
look at means (outliers), difference scores 9can cancel each other out), and standard devs (variability in data)
What are the two of the strongest predictors of "poor" adulthood outcomes that are shown by numerous studies on lifespan ASD?
low IQ early language deficits
Common interventions used: (Anderson et al., 2018)
mentoring, transition programs, CBT, academic skills, and social skill development
students without disabilities used in intervention: (Anderson et al., 2018)
mentors, orientation leaders, participation assistants, student ambassadors, and therapists - social skills - stress - time management - many other topics (p. 1547)
comprehensive assessments should be:
multi-dimensional --ASD symptoms --intellectual ability --EF skills/independence level --comorbid disorders multi-modal --self report vs. direct testing --historical info --other informants
Nicolaidis 2019
need to support ASD in academia - participatory research to include ASD in an authentic way
Pallathra (2018) results
no studies focused on motivation specifically instead, focus on social anxiety, mental health, social skills, social cognition
why would you choose certain measures over others?
overlap in any measure with social difficulties; make sure one isn't picking up on the same things as another one more variability = more chance for correlation
Koffer-Miller et al. (2018)
perspectives of stakeholders enrolled in programs for autistic adults in PA
results of AHAT (Nicolaidis et al.)
positives of open-ended interviews: - clarify needs - validation - self-efficacy - improve PCP interactions negatives: - PCP unlikely to read report - neg response from PCP
Marsack & Perry (2017) Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder
social exclusion of lifelong caregivers - aging research
Brown-Lavoie et al., 2014 strengths & weaknesses
strength: reliability of scales weakness: self-selection bias (large # who started but didn't finish questionnaires) & lots of unknowns about the participants
Yang et al. virtual reality social cognition training
suggest that neural mechanisms could monitor treatment, however, fMRI is expensive is it even helpful if you dont see a bx change but you do see a neural change? not a super reliable study (no control group and needs more research)
Chan et al. studied:
sustained employment measured over specific points in time with adults with ASD and an ID
criteria c
symptoms must be present in early development --> BUT may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies later in life)
According to Roestorf et al. why is it that older adults with autism many times don't get a proper diagnosis?
the symptoms are different in older adults versus kids (where it is most commonly diagnosed). The chances are that an individual who has lived this long going undiagnosed either does not want to be diagnosed in which case even when being evaluated will be able to mask it. Someone else may simply not realize they have autism and take it as life, after all they have made it this far... Either way, Both might be tricky as these individuals have adapted and been able to survive in their way of life, so it may not be as easy to spot as in kids who are acting up because they do not know any better.
Nicolaidis et al. article
tool to address barriers to healthcare access for autistic adults
What were three themes identified from Miller et al., 2018 study examining experiences of adults in PA Medicaid programs?
training needs, community engagement, employment
Women and men with ASD are both as likely to be victims of sexual harrassment
true
ASAN views autism as a disability
true - lots of people falsely believe that advocates of ASD think ASD isn't a disability
quality of life measures (Ayers et al. 2017)
various focus on (1) physical health and (2) mental well-being mostly self-assessment
Hartmann et al., 2019 strengths and weaknesses
weakness: - be aware of size of difference (meaningful v. statistically sig) - variability in reliability of scales
Gantman et al. 2012 results
ya program: less lonliness and improved social skills social couch: improved social skills, better social responsiveness; increased empathy; more get-togethers
If you make the criteria less stringent
you get better sensitivity and worse specificity → early intervention, early dx, you don't wanna miss anyone. Probably won't hurt to get some intervention
If you make your criteria more stringent...
you get worse sensitivity and better specificity → less false positives
In order to improve the quality of life, identify targets/ways for intervention/improvements in the delivery of effective healthcare for adults with ASD?
· Communication- respect/try/accommodate the way I talk to you · Training on how to deal with adults with ASD
*What is the purpose of the Developmental Disabilities (DD) services? What are some of the types of services provided to transition-aged and/or adults with ASD? *
· The aim of DD services is to improve the well-being and participation of people with ASD in the community · Some services provided include dental care, residential, transportation, vocational, and mental health services. · Currently there stands to be insufficient funding for those services for adults with ASD. Additionally, services and funding vary from state to state.
What factors can point to the need for better understanding of the experiences of autistic individuals as they age over time?
• Several conditions such as: • Anxiety • Depression • Attention Deficit Hyperactivity Disorder (ADHD) • Obsessive-Compulsive Disorder • Other mental health/psychological difficulties or neurocognitive/neurological disorders such as dementia These all have an effect on their wellbeing and daily living.
