Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students.

LAY ABSTRACT: People learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.

Experiences of Students, Teachers, and Parents Participating in an Inclusive, School-Based Informal Engineering Education Program.

Many youth on the autism spectrum possess interests and strengths for STEM-related postsecondary pathways, yet there are few research-based programs to support those interests and competencies including complex problem solving and social communication. This qualitative study explored the experiences and perceived outcomes of students, teachers, and parents participating in an inclusive, strength-based, extracurricular engineering design program entitled the IDEAS Maker Club. Twenty-six students, 13 parents, and nine teachers in the program completed interviews and program logs while researchers conducted classroom observations over 2 years. Thematic analysis identified five common themes: (1) positive student experience and engagement, (2) skills acquisition, (3) development of interest in STEM and related careers, (4) social relationships and community, and (5) safe spaces that supported self-determination.

Exploring the Career Motivations, Strengths, and Challenges of Autistic and Non-autistic University Students: Insights From a Participatory Study.

Supports for the growing number of autistic university students often focus on helping them succeed in university. However, even educated autistic people experience discrimination and other challenges which can make it very difficult for them to obtain meaningful jobs. Little remains known about how universities can better support their autistic students and alumni in overcoming barriers to meaningful employment. In this participatory study, a team of autistic and non-autistic researchers asked autistic (n = 92) and non-autistic (n = 774) university students about their career aspirations, strengths they believe will help them succeed in their "dream jobs," and obstacles they expect to encounter. Autistic participants' top goal in attending college was to improve their career prospects. However, relatively few autistic students reported learning career-specific skills at university. Autistic students were more likely to seek an academic job and less likely to seek a career in healthcare than non-autistic students. Autistic students highlighted writing skills and detail orientation as strengths that could help them succeed in their dream jobs more often than non-autistic students. However, they were also more likely to expect discrimination, social, and psychological difficulties to stand in the way of their dream jobs. These findings suggest that universities should prioritize experiential learning opportunities to help autistic (and non-autistic) students develop employment-related skills while providing mental health supports. Universities should demonstrate their commitment to supporting diverse learners by seeking out and hiring autistic professionals and by teaching their own staff and employers how to appreciate and support autistic colleagues.

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

LAY ABSTRACT: There is a lot of research about how parents think about their child's autism but we don't know much about how parents talk with their kids about autism. How parents talk with their kids about autism may shape how kids see autism. A team of autistic and non-autistic people (including a mother of an autistic person) did a study. We wanted to know if how parents talk with their kids about autism shapes how their kids see autism. Nineteen teens from a summer camp did interviews and surveys. Their mothers did surveys. Teens learned about if they had autism in different ways. Some teens still didn't know they were autistic. Teens whose moms chose to tell them about their autism talked about autism and themselves more positively than teens whose moms didn't choose to talk with them about autism. Only teens whose moms chose to talk with them about autism described themselves as having social strengths. Teens had a harder time defining autism than moms. However, teens and moms talked about autism in similar ways. Our study shows that parents can help their kids see autism and themselves more positively by talking with their kids about autism early in development.

Comparing the writing skills of autistic and nonautistic university students: A collaboration with autistic university students.

LAY ABSTRACT: We do not know very much about the writing skills of autistic university students. Studies with autistic children and teenagers show that some autistic young people have difficulties writing. Other autistic people are talented writers. In fact, some autistic people would rather write than speak. Good writers often imagine other people's points of view when writing. Autistic people sometimes have difficulties understanding others' points of view. Yet, autistic people often work much harder to understand others' points of view than not-autistic people do. We collaborated with autistic university student researchers to see if autistic university students are better or worse at writing than nonautistic students. Autistic university students in our study were better writers than nonautistic students. Autistic students in our study had higher nonverbal intelligence than nonautistic students. Autistic students also put themselves under more pressure to write perfectly than nonautistic students did. Autistic students did not show any difficulties understanding other minds. This study shows that some autistic university students have stronger writing skills and higher intelligence than nonautistic university students. Yet, autistic students may be too hard on themselves about their writing. Fun activities that help students explore their ideas without pressure (like theater games) may help autistic students be less hard on their writing. Teachers can help autistic students express themselves through writing by encouraging them to write about their interests, by giving them enough time to write, and by letting them write using computers if they want to. This study shows that collaborations with autistic people can help us understand strengths that can help autistic people succeed.

Developing the Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy Through a Research Partnership with Autistic Scholars.

Autism research studies have traditionally failed to represent the full diversity of the autism spectrum due to the lack of measures available for use with participants who prefer to express themselves visually. A multidimensional measure of emotions, which can include both picture- and text-based prompts, may improve accessibility of emotion rating measures and broaden participation in research and educational evaluations to include those who communicate in diverse ways. Picture-based measures designed to assess participants' emotions may be useful for research concerning autistic identity and service evaluation, two areas where representation of diverse perspectives is needed. Our participatory group of autistic and nonautistic researchers developed a Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy (AAPE) by adapting and expanding upon an existing emotion rating scale. When testing the AAPE with autistic college students (n = 72), their open-ended responses indicated that the AAPE's dimensions of affect (97.2% correct), anxiety (79.2% correct), and energy (84.7% correct) were well comprehended without text-based labels with potential for improvement in how pride (52.8% correct) was represented. When provided with the labels that each dimension was intended to represent, participants generally agreed that each emotional dimension was well represented. When tested in an informal educational summer camp with autistic children and adolescents (n = 50), the AAPE was well received and revealed insights about the students' emotional responses to different instructional strategies that can guide curricular improvements. The AAPE has utility as a tool to help diverse autistic individuals self-advocate and improve research and services. Lay summary: Why was this study done?: There are very few tools that autistic people can use to share how they feel. We wanted to develop a tool to help autistic people express their emotions using pictures. Pictures can help autistic people share how they feel.What was the purpose of this study?: We wanted to make an easy-to-understand tool that autistic people can use to share how they feel.What did the researchers do?: Our research group is participatory, meaning that autistic and nonautistic researchers worked together to make our tool. An autistic artist drew the tool. We called it the AAPE, which stands for the emotions it assesses: Affect, Anxiety, Pride, and Energy. We worked together to see how well the AAPE worked. We used a survey to see if autistic high school and college students understood our first try at the AAPE and we learned how to make the AAPE better from these students. We worked together to make the AAPE better. Then, we did another survey with autistic college students to see if our second try at the AAPE worked better. Then, we asked autistic kids and teenagers to use the AAPE to share how they felt about different ways of teaching.What were the results of the study?: In our final test, we asked 72 autistic college students to tell us what emotions they thought the AAPE was showing. College students thought that affect (97.2%), anxiety (79.2%), and energy (84.7%) showed the emotions we aimed to show with room for improvement in how pride (52.8%) was shown. After we told participants which emotion each scale was showing, they agreed that affect (average score 4.28 of 5) and anxiety (4.29 of 5) showed the emotions best, followed by energy (4.08 of 5) and pride (3.5 of 5) on a scale from 1 to 5 (strongly agree).Students preferred using the AAPE compared with text-based surveys we used in the past. Results showed that the AAPE does a good job at measuring emotions. Edits may still be needed to better show "pride." Work is needed with nonspeaking people to make sure our measure works well for people who communicate in different ways.What are potential weaknesses in the study?: The autistic adolescents and adults we have tested the AAPE with so far have not been very diverse. We did not include participants who communicate without speaking in these first tests of the AAPE. We plan to use the AAPE with more diverse groups in future studies.How will these findings help autistic adults now or in the future?: In a future study, we will use the AAPE to rate pictures that show experiences of being autistic, like feeling outside a social group, having sensory difficulties, and making patterns. We would like to do this because some studies talk about negative experiences of autism, like feeling the need to hide autistic traits, but other studies describe strengths of autism, like strong memories and advanced knowledge in particular subjects. However, these studies do not talk about the emotions that come with these experiences and if these experiences are shared with autistic people who do not use speech to communicate. The AAPE is a tool that might help us understand how diverse autistic people feel about autism.

Overweight/Obese adults with pituitary disorders require lower peak growth hormone cutoff values on glucagon stimulation testing to avoid overdiagnosis of growth hormone deficiency.

CONTEXT: Obesity is associated with diminished GH secretion, which may result in the overdiagnosis of adult GH deficiency (GHD) in overweight/obese pituitary patients. However, there are no body mass index (BMI)-specific peak GH cutoffs for the glucagon stimulation test (GST), the favored dynamic test for assessing adult GHD in the United States. OBJECTIVE: The objective of the study was to determine a peak GH cutoff level for the diagnosis of adult GHD in overweight/obese individuals using the GST. DESIGN: This was a retrospective, cross-sectional study. SETTING: The study was conducted at Massachusetts General Hospital and Oregon Health and Science University. METHODS: A total of 108 subjects with a BMI ≥ 25 kg/m(2) were studied: healthy controls (n = 47), subjects with total pituitary deficiency (TPD) (n = 20, ≥ 3 non-GH pituitary hormone deficiencies), and subjects with partial pituitary deficiency (PPD) (n = 41, 1-2 non-GH pituitary hormone deficiencies). INTERVENTION: The intervention consisted of a standard 4-hour GST. MAIN OUTCOME MEASURES: The main outcome measure was peak GH level on GST. RESULTS: Using the standard peak GH cutoff of 3 ng/mL, 95% of TPD cases (19 of 20), 80% of PPD (33 of 41), and 45% of controls (21 of 47) were classified as GHD. In receiver-operator characteristic curve analysis (controls vs TPD), a peak GH value of 0.94 ng/mL provided the greatest sensitivity (90%) and specificity (94%). Using a peak GH cutoff of 1 ng/mL, 6% of controls (3 of 47), 59% of PPDs (24 of 41), and 90% of TPDs (18 of 20) were classified as GHD. BMI (R = -0.35, P = .02) and visceral adipose tissue (R = -0.32, P = .03) negatively correlated with peak GH levels in controls. CONCLUSION: A large proportion of healthy overweight/obese individuals (45%) failed the GST using the standard 3 ng/mL GH cutoff. Overweight/obese pituitary patients are at risk of being misclassified as GHD using this cutoff level. A 1-ng/mL GH cutoff may reduce the overdiagnosis of adult GHD in overweight/obese patients.

Comparison of hip geometry, strength, and estimated fracture risk in women with anorexia nervosa and overweight/obese women.

CONTEXT: Data suggest that anorexia nervosa (AN) and obesity are complicated by elevated fracture risk, but skeletal site-specific data are lacking. Traditional bone mineral density (BMD) measurements are unsatisfactory at both weight extremes. Hip structural analysis (HSA) uses dual-energy X-ray absorptiometry data to estimate hip geometry and femoral strength. Factor of risk (φ) is the ratio of force applied to the hip from a fall with respect to femoral strength; higher values indicate higher hip fracture risk. OBJECTIVE: The objective of the study was to investigate hip fracture risk in AN and overweight/obese women. DESIGN: This was a cross-sectional study. SETTING: The study was conducted at a Clinical Research Center. PATIENTS: PATIENTS included 368 women (aged 19-45 y): 246 AN, 53 overweight/obese, and 69 lean controls. MAIN OUTCOME MEASURES: HSA-derived femoral geometry, peak factor of risk for hip fracture, and factor of risk for hip fracture attenuated by trochanteric soft tissue (φ(attenuated)) were measured. RESULTS: Most HSA-derived parameters were impaired in AN and superior in obese/overweight women vs controls at the narrow neck, intertrochanteric, and femoral shaft (P ≤ .03). The φ(attenuated) was highest in AN and lowest in overweight/obese women (P < .0001). Lean mass was associated with superior, and duration of amenorrhea with inferior, HSA-derived parameters and φ(attenuated) (P < .05). Mean φ(attenuated) (P = .036), but not femoral neck BMD or HSA-estimated geometry, was impaired in women who had experienced fragility fractures. CONCLUSIONS: Femoral geometry by HSA, hip BMD, and factor of risk for hip fracture attenuated by soft tissue are impaired in AN and superior in obesity, suggesting higher and lower hip fracture risk, respectively. Only attenuated factor of risk was associated with fragility fracture prevalence, suggesting that variability in soft tissue padding may help explain site-specific fracture risk not captured by BMD.