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1. Growing older with autism – The experiences of adult siblings of individuals with autism

Author

Patricia Howlin, Vasiliki Eirinaki, Sarah Savage, and Philippa Moss

Subjects
030506 rehabilitation, Coping (psychology), media_common.quotation_subject, 05 social sciences, Sister, medicine.disease, Mental health, Brother, Developmental psychology, 03 medical and health sciences, Psychiatry and Mental health, Clinical Psychology, mental disorders, Developmental and Educational Psychology, medicine, Personality, Autism, 0501 psychology and cognitive sciences, Sibling, 0305 other medical science, Psychology, Welfare, 050104 developmental & child psychology, media_common
Abstract

Background Most studies of siblings of individuals with autism have involved children or adolescents. In the present study we explored the experiences of adults with a brother or sister with autism. Method As part of a larger scale, adult sibling study, 56 individuals (37 females, 19 males; mean age 40 years) were asked about their experiences of growing up with a sibling with autism and about their worries for the future. Results Most participants (77%) described positive benefits, often related to the impact on their own life or personality (e.g. making them more tolerant or caring) and to the positive characteristics of their sibling with autism. Only 14% could describe no positive aspects. The principal problems described were related to coping with behavioural difficulties (39%) and disruption to family relationships (32%) or social life (23%). There was no association between the level of negative descriptions and individual sibling characteristics, participants' social functioning or mental health. The main concerns for the future, expressed by the majority of participants, focussed on problems of finding appropriate care (77%) and the potential emotional impact on the autism siblings of loss of parents. Conclusions Most participants described a mix of positive and negative experiences but current concerns focussed predominantly on future longterm care. Many adult siblings will become increasingly responsible for ensuring the welfare of the individual with autism. Medical and other services need to recognise the importance of this role, and the need actively to involve siblings in care planning and decision-making.

Published
2019

2. Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study

Author

Patricia Howlin, Sarah Savage, Philippa Moss, Patrick Bolton, and Michael Rutter

Subjects
Adult, Male, Obsessive-Compulsive Disorder, medicine.medical_specialty, Anxiety, Developmental and Educational Psychology, medicine, Humans, Attention deficit hyperactivity disorder, Autistic Disorder, Psychiatry, Depression (differential diagnoses), Intelligence quotient, Depression, Mental Disorders, Middle Aged, medicine.disease, Mental health, Comorbidity, Cohort, Autism, Female, Self Report, medicine.symptom, Psychology, Follow-Up Studies, Clinical psychology
Abstract

Data on psychiatric problems in adults with autism are inconsistent, with estimated rates ranging from around 25% to over 75%. We assessed difficulties related to mental health in 58 adults with autism (10 females, 48 males; mean age 44 years) whom we have followed over four decades. All were of average non-verbal intelligence quotient when diagnosed as children. Overall ratings of mental health problems were based on data from the Family History Schedule (Bolton et al., 1994). Informant reports indicated that many of the cohort (44%) had experienced no mental health problems in adulthood; 28% had experienced mild to moderate difficulties, 23% had severe and 5% very severe problems. Depression was the most commonly reported problem. Among those adults ( n = 22) able to report on their own mental state, again many (45%) reported no mental health problems, although 27% reported very severe mental health problems related to anxiety, depression and/or obsessive–compulsive symptoms. Informant ratings of poor mental health were not associated with gender, severity of autism in childhood, or child or adult intelligence quotient, but there were small correlations with overall social functioning (rho = 0.34) and current autism severity (rho = 0.37). The findings highlight the difficulties of assessing mental health problems in adults with autism and the need for appropriately validated measures.

Published
2015

3. Adults with Autism Spectrum Disorders

Author

Patricia Howlin and Philippa Moss

Subjects
Adult, Epilepsy, Adolescent, MEDLINE, Comorbidity, Prognosis, medicine.disease, Mental health, Developmental psychology, Disadvantaged, Psychiatry and Mental health, Quality of life (healthcare), Child Development Disorders, Pervasive, Intervention (counseling), medicine, Humans, Autism, Causation, Child, Psychology, Follow-Up Studies
Abstract

In the decades since autism was first formally described in the 1940s, there have been major advances in research relating to diagnosis, causation, and treatment approaches for children with this condition. However, research into prognosis, outcomes, or effective interventions for adults with autism spectrum disorders (ASDs) is much more limited. In this paper, we review studies of outcome in adulthood. The findings indicate that, as adults, many people with ASD, including those of normal IQ, are significantly disadvantaged regarding employment, social relationships, physical and mental health, and quality of life. Support to facilitate integration within the wider society is frequently lacking, and there has been almost no research into ways of developing more effective intervention programs for adults. Moreover, most of the research on outcome has involved relatively young people in their 20s and 30s—much less is known about outcomes for people with ASD as they reach mid-late adulthood. Systematic follow-up studies from childhood through adulthood are needed if we are to gain a better understanding of trajectories of development over the lifespan, to identify the factors that influence prognosis, and to determine how these factors exert their effects and how they may be modified to ensure a better future.

Published
2012

4. Outcomes in adult life among siblings of individuals with autism

Author

Sarah Savage, Patrick Bolton, Philippa Moss, Michael Rutter, and Patricia Howlin

Subjects
Adult, Male, medicine.medical_specialty, Intelligence, Developmental psychology, Dyslexia, Social Skills, Young Adult, Social skills, mental disorders, London, Developmental and Educational Psychology, medicine, Humans, Young adult, Autistic Disorder, Public health, Mental Disorders, Siblings, Social change, Cognition, medicine.disease, Mental health, Case-Control Studies, Autism, Educational Status, Female, Psychology
Abstract

Little is known about adult siblings of individuals with autism. We report on cognitive, social and mental health outcomes in 87 adult siblings (mean age 39 years). When younger all had been assessed either as being "unaffected" by autism (n = 69) or as meeting criteria for the "Broader Autism Phenotype" (BAP, n = 18). As adults, all scored within the average range on tests of intelligence, numeracy and literacy. "Unaffected" siblings were functioning well in terms of jobs, independence and social relationships. Levels of social relationships and employment were significantly lower in the BAP group; autism traits and mental health problems were significantly higher. The data suggest that the "broader autism phenotype" is a meaningful concept but more sensitive diagnostic measures are required.

Published
2014

5. Cognitive and language skills in adults with autism: a 40-year follow-up

Author

Philippa Moss, Patricia Howlin, Althea Tempier, Michael Rutter, and Sarah Savage

Subjects
Adult, Male, Time Factors, Intelligence, Developmental psychology, Epilepsy, Predictive Value of Tests, Self-destructive behavior, Developmental and Educational Psychology, medicine, Humans, Language Development Disorders, Cognitive skill, Functional ability, Intelligence quotient, Cognition, Middle Aged, medicine.disease, Vineland Adaptive Behavior Scale, Psychiatry and Mental health, Child Development Disorders, Pervasive, Pediatrics, Perinatology and Child Health, Autism, Female, medicine.symptom, Psychology, Cognition Disorders, Follow-Up Studies
Abstract

Background It is well established that very few individuals with autism spectrum disorders (ASD) and an IQ below 70 are able to live independently as adults. However, even amongst children with an IQ in the normal range, outcome is very variable. Childhood factors that predict later stability, improvement or decline in cognitive functioning remain uncertain and, in particular, very little is known about trajectories in later adulthood. Method Changes in cognitive and language ability from childhood to adulthood were assessed in 60 individuals with autism, all of whom had an IQ in the average range as children. Mean age in childhood = 6 years (range 2–13 years); mean age in adulthood = 44 years (range 29–64 years). Trajectories of change and factors related to current cognitive abilities were explored. Results For the majority of participants (N = 45, 75%), who were testable both as children and adults, IQ remained very stable and language also improved over time. However, 15 individuals could not be assessed on standard tests as adults and their developmental level could be estimated only on the Vineland Adaptive Behavior Scales. Almost all these adults (apart from one who had suffered a major stroke) showed severe aggressive or self-injurious behaviours; none had ever developed language above a 3-year level, and seven had developed epilepsy. Conclusions For most individuals with autism who had an IQ in the average range (i.e. ≥70) as children, childhood IQ proved a reliable predictor of cognitive functioning well into mid- to- later adulthood. However, a significant minority was no longer testable on standard tests as adults. Their current very low levels of functional ability were generally associated with severe behavioural disturbance and persisting and severe language impairment; 50% of these individuals had also developed epilepsy, pointing to the role of organic brain dysfunction. Implications for early intervention are discussed.

Published
2013

6. Obsessive Desire for Sameness

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

7. Organizational Skills

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

8. Oxazepam

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

9. Outcome Studies

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

10. Obstetrical Complications/Risk Factors

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

11. Operational Stress Injury

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

12. Orofacial Imitation

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

13. OXPHOS Disorders

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

14. One-on-One

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

15. Observational Assessments

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

16. Omission Training

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

17. Objective

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

18. Organized Work Systems

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

19. Office of Rehabilitation

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

20. Overcorrection

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

21. Operant Conditioning

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

22. Optimal Outcome

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

23. Onset

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

24. Operant Behavior

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

25. Oral Language

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

26. Oral-Motor Imitation

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

27. Organization of the Physical Learning Environment

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

28. Optimal Arousal

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

29. Options Method

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

30. Ornitz, Edward

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

31. Outcome

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

32. Occipital Lobes

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

33. Oral Sensitivity

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

34. Organizational Prevention

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

35. Orap

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

36. Other Pervasive Developmental Disorder

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

37. One-to-One

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

38. Otitis Media

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

39. Overly Talkative

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

40. Occupational Therapy (OT)

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

41. Oral-Motor Skills

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

42. Oral-Facial Imitation

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

43. Object Permanence

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

44. Obsessive-Compulsive Disorder (OCD)

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

45. Oral-Motor Apraxia

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

46. Obstipation

Author

Suzanne Macari, Ruth Eren, Louise Spear-Swerling, John T. Danial, Lawrence David Scahill, Fred R. Volkmar, Kevin A. Pelphrey, Winifred Schultz-Krohn, Brett Yamane, L. Lee Carlisle, Bryan King, Vicki Madaus Knapp, David McAdam, Dorrey Sproatt, Anahita Navab, Rhea Paul, Katherine Tyson, Deborah Fein, Allison Bean, Casey Zampella, Loisa Bennetto, Devon Hartford, Stephen R. Hooper, Lauren Turner Brown, Jennifer McCullagh, Patricia Howlin, and Philippa Moss

Published
2013

47. Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children

Author

Michael Rutter, Sarah Savage, Patricia Howlin, and Philippa Moss

Subjects
Adult, Male, medicine.medical_specialty, Intelligence, Psychological intervention, Severity of Illness Index, Predictive Value of Tests, mental disorders, Severity of illness, Developmental and Educational Psychology, medicine, Humans, Family history, Autistic Disorder, Psychiatry, Social Behavior, Cognition, Middle Aged, medicine.disease, Social relation, Psychiatry and Mental health, Autism spectrum disorder, Cohort, Disease Progression, Autism, Female, Psychology
Abstract

Objective To describe current social functioning in a clinical sample of 60 adults with autism (mean age = 44 years) who were all of average nonverbal IQ (70+) when first diagnosed (mean age = 6.75 years). Method Outcome measures included standardized diagnostic and cognitive assessments and questionnaires on social functioning. Child and adult variables related to current outcomes were explored. Results All individuals continued to meet criteria for autism spectrum disorder (ASD) on the Autism Diagnostic Interview–Revised (ADI-R), but severity of autism symptoms declined over time. Nevertheless, only 10 individuals (17%) were rated as having a "good" or "very good" outcome; the majority (60%) were assessed as having "poor" or "very poor" outcomes. The strongest predictor of adult outcome was the Reciprocal Social Interaction domain score on the ADI at diagnostic confirmation. Change over time was further examined in a subgroup (n = 44) previously assessed 20 years ago earlier (mean age = 26 years). Although severity of autism had continued to decrease during the adult period, social outcomes were poorer than in younger adulthood. Conclusions In this cohort of adults first diagnosed with autism, on average, 37 years previously, social inclusion remains very limited, despite general improvements in autism symptomatology with age. Whether these findings will be replicated in future generations of children with autism, who now have the benefits of earlier diagnosis and wider access to specialist provision, needs to be the focus of further longitudinal research.

Published
2012

48. Child and Adult Factors Related to Quality of Life in Adults with Autism

Author

Patricia Howlin, Philippa Moss, and William Mandy

Subjects
Adult, Male, Semi-structured interview, medicine.medical_specialty, Autism, Correlation, 03 medical and health sciences, 0302 clinical medicine, Quality of life, medicine, Developmental and Educational Psychology, Humans, 0501 psychology and cognitive sciences, Autistic Disorder, Child, Aged, Original Paper, Intelligence quotient, Public health, 05 social sciences, Mean age, Middle Aged, medicine.disease, humanities, Caregivers, Well-being, Quality of Life, Female, Self Report, Psychology, Adult outcome, 030217 neurology & neurosurgery, 050104 developmental & child psychology, Clinical psychology
Abstract

The WHO Quality of Life-Brief questionnaire was used to assess quality of life (QoL) among 52 adults with autism (mean age 49 years) followed-up since childhood. Overall, assessments of QOL were more positive than measures of objective social outcome (jobs, independence, relationships etc.) but correlations between caregiver and self-reports were low. Informant ratings indicated few correlations between current QoL and any child or adult factors. On self-report ratings, QoL was significantly negatively correlated with severity of repetitive behaviours in childhood; higher QoL was positively associated with better adult social outcomes. However, only a minority of adults (n = 22) could provide self-report data and findings highlight the need to develop valid measures for assessing the well-being of adults with autism. Electronic supplementary material The online version of this article (doi:10.1007/s10803-017-3105-5) contains supplementary material, which is available to authorized users.

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