Parenting of Autistic Children

Advances in Autism Research
April 2010

The content of many studies published in peer-reviewed journals is relevant to challenges faced by parents of children or adults with autism or one of the other ASDs. Here is a sampling from Pubmed.

1. Emotional, developmental, and behavioral health of American children and their families: a report from the 2003 National Survey of Children's Health
Blanchard LT, Gurka MJ, Blackman JA.
Pediatrics. 2006 Jun;117(6):e1202-12.
http://pediatrics.aappublications.org/cgi/content/full/117/6/e1202

BACKGROUND: Recent children's health surveys have documented a high prevalence of emotional, developmental, and behavioral problems among children. Data from the 2003 National Survey of Children's Health provide new insights into these problems and their association with family function and community participation. These issues have become a current focus of the World Health Organization. METHODS: Answers to questions of interest from the 2003 National Survey of Children's Health were reported using estimates and SEs of rates. Statistical comparisons of rates with chi2 tests at the 0.05 level were made when relevant. RESULTS: The most commonly diagnosed problems among children 6-17 years of age were learning disabilities (11.5%), attention-deficit/hyperactivity disorder (8.8%), and behavioral problems (6.3%); among preschoolers, speech problems (5.8%) and developmental delay (3.2%) were most common. One in 200 children was diagnosed with autism. In contrast, rates of parental concerns about emotional, developmental, or behavioral problems were much higher; for example, 41% of parents had concerns about learning difficulties and 36% about depression or anxiety. Children with developmental problems had lower self-esteem, more depression and anxiety, more problems with learning, missed more school, and were less involved in sports and other community activities. Their families experienced more difficulty in the areas of childcare, employment, parent-child relationships, and caregiver burden. CONCLUSIONS: The most recent National Survey of Children's Health mirrored results of previous surveys regarding rates of diagnosed emotional, developmental, and behavioral problems, including an escalating diagnosis of autism among children. Reported rates of parental concerns about these problems were much higher, suggesting possible underdiagnosis of children's problems. Children with chronic problems had diminished family functioning, more school absences, and less participation in community activities compared with other children. Their parents experienced more difficulty with childcare, employment, and parenting skills. A change in treatment emphasis is needed, away from an exclusive focus on a child's developmental and behavioral problems to one that addresses the impacts of these problems on the family and community participation. A new approach to the way these issues are addressed and managed has the potential to enhance the quality of life for a child, as well as the parents, and to produce more meaningful and tangible solutions to these complex and increasingly evident problems.

2. Empowering families through Relationship Development Intervention: an important part of the biopsychosocial management of autism spectrum disorders
Gutstein SE.
Ann Clin Psychiatry. 2009 Jul-Sep;21(3):174-82.
$ https://www.aacp.com/Abstract.asp?AID=7940&issue=August%202009&page=C&UID=

BACKGROUND: Relationship Development Intervention (RDI) is a program designed to empower and guide parents of children, adolescents and young adults with autism spectrum disorders (ASD) and similar developmental disorders to function as facilitators for their children's mental development. RDI teaches parents to play an important role in improving critical emotional, social, and metacognitive abilities through carefully graduated, guided interaction in daily activities. METHODS: The paper reviews RDI's theoretical underpinnings, current methodology and preliminary research results. The clinical utilization of RDI is discussed as an important part of the biopsychosocial management of ASD. RESULTS: Although a controlled, blinded study of RDI has yet to be done, preliminary research suggests that parents, through the RDI curriculum and consultation process, have the potential to exert a powerful impact on their ASD children's experience-sharing communication, social interaction, and adaptive functioning. CONCLUSIONS: RDI should be considered as part of a comprehensive treatment regimen, in which the physician plays a clinical management role, providing medical and psychiatric consultation. The RDI clinician can function as a remediation specialist, providing accurate feedback to the physician, along with individualized training and guidance to family members.

3. Psychological functioning and coping among mothers of children with autism: a population-based study
Montes G, Halterman JS.
Pediatrics. 2007 May;119(5):e1040-6.
http://pediatrics.aappublications.org/cgi/content/full/119/5/e1040

OBJECTIVES: Studies suggest that having a child with autism has a negative impact on maternal psychological functioning, but no large-scale, population-based studies are available. The objectives of this study were to (1) describe the psychological functioning, physical and mental health, family communication, and parenting support of mothers of a child with autism compared with other mothers on a population basis and (2) assess the independent relationship between having a child with autism and these outcomes, controlling for the child's social skills and demographic background. METHODS: Mothers of 61,772 children who were 4 to 17 years of age were surveyed by the National Survey of Children's Health, 2003. Autism was measured from an affirmative maternal response to the question, "Has a doctor or health professional ever told you your child has autism?" There were 364 children with autism in the sample. RESULTS: Mothers of a child with autism were highly stressed and more likely to report poor or fair mental health than mothers in the general population, even after adjustment for the child's social skills and demographic background. However, mothers of a child with autism were more likely to report a close relationship and better coping with parenting tasks and less likely to report being angry with their child after adjustment for the child's social skills and demographic background. Having a child with autism was not associated with lower social support for parenting, an altered manner in which serious disagreements were discussed in the household, or increased violence in the household. CONCLUSION: Mothers of children with autism showed remarkable strengths in the parent-child relationship, social support, and stability of the household in the context of high stress and poorer mental health.

4. Time Demands of Caring for Children with Autism: What are the Implications for Maternal Mental Health?
Sawyer MG, Bittman M, La Greca AM, Crettenden AD, Harchak TF, Martin J.
Children, Youth and Women's Health Service
North Adelaide, SA, 5006, Australia
J Autism Dev Disord. 2009 Dec 1. [Epub ahead of print]

This study examined the relationship between maternal mental health problems and both caregiving time and experience of time pressure for 216 mothers of children with autism. Data describing caregiving time was obtained using 24-h time-diaries. Standard questionnaires were used to assess time pressure, social support, children's emotional and behavioural problems, and maternal mental health problems. After adjusting for the effect of children's age, maternal social support, and children's behaviour problems, time pressure but not hours of caregiving, had a significant positive relationship with maternal mental health problems. Findings suggest that the quality of home-based care for children with autism may be adversely affected if time pressure experienced by caregivers compromises their mental health and well being.

5. The relationship between autism and parenting stress
Schieve LA, Blumberg SJ, Rice C, Visser SN, Boyle C.
National Center on Birth Defects and Developmental Disabilities
Pediatrics. 2007 Feb;119 Suppl 1:S114-21.
http://pediatrics.aappublications.org/cgi/content/full/119/Supplement_1/S114

OBJECTIVE: We assessed associations between parenting a child with autism and stress indicators. METHODS: In the 2003 National Survey of Children's Health, parents or other knowledgeable adult respondents for children aged 4 to 17 years reported their recent feelings about their life sacrifices to care for their child, difficulty caring for their child, frustration with their child's actions, and anger toward their child. Responses were compiled in the Aggravation in Parenting Scale. Parents of children reported to have autism (N = 459) were compared with parents of: (1) children with special health care needs including emotional, developmental, or behavioral problems other than autism that necessitated treatment (children with other developmental problems [N = 4545]); (2) children with special health care needs without developmental problems (N = 11475); and (3) children without special health care needs (N = 61826). Weighted estimates are presented. RESULTS: Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%). However, within the autism group, the proportion of parents with high aggravation was 66% for those whose child recently needed special services and 28% for those whose child did not. The parents of children with autism and recent special service needs were substantially more likely to have high aggravation than parents of children with recent special service needs in each of the 3 comparison groups. Conversely, parents of children with autism but without recent special service needs were not more likely to have high aggravation than parents of children with other developmental problems. CONCLUSIONS: Parenting a child with autism with recent special service needs seems to be associated with unique stresses.

6. Health-related quality of life in parents of school-age children with Asperger Syndrome or High-Functioning Autism
Allik H, Larsson JO, Smedje H.
Karolinska Institutet
Health Qual Life Outcomes. 2006 Jan 4;4:1.
http://www.hqlo.com/content/4/1/1

BACKGROUND: The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics. METHODS: The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ). RESULTS: The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child. CONCLUSION: Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.

7. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders
Lach LM, Kohen DE, Garner RE, Brehaut JC, Miller AR, Klassen AF, Rosenbaum PL.
McGill University, Montreal
Disabil Rehabil. 2009;31(8):607-18.
$ http://informahealthcare.com/doi/pdf/10.1080/09638280802242163

PURPOSE: Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both Neuro and behaviour problems differ in their physical and psychosocial outcomes from caregivers of children with either condition or neither condition. METHOD: The first wave of data collected in the National Longitudinal Survey of Children and Youth in Canada (1994) was used to identify four groups of caregivers of 4- to 11-year-old children: caregivers of children with a Neuro disorder and externalizing behaviour problems (Both; n = 414), caregivers of children with a Neuro disorder only (Neuro Only; n = 750), caregivers of children with an externalizing behaviour problem only (Ext Only; n = 1067), and caregivers of children with neither health condition (Neither; n = 7236). RESULTS: Caregivers in the Both group were least likely to report excellent or very good health, and more frequently reported chronic conditions such as asthma, arthritis, back problems, migraine headaches, and limitations in activities as compared to the Neither group. This group also exhibited higher depression scores, experienced more problematic family functioning and reported lower social support than the Neither group. Scores for caregivers in the Ext Only and Neuro Only groups tended to lie between the Both and Neither group scores and often did not differ from one another. CONCLUSIONS: Caregivers of children with both neurodevelopmental disorders and behaviour problems exhibited a greater number of health and psychosocial problems. While addressing children's behaviour problems, health care professionals should also consider caregiver physical and psychosocial health, as this may also have an impact on children's well-being.

8. The relationship between caregiver's strain and social support among mothers with intellectually disabled children
Tsai SM, Wang HH.
J Clin Nurs. 2009 Feb;18(4):539-48.
$ http://www3.interscience.wiley.com/cgi-bin/fulltext/121638345/PDFSTART

AIMS AND OBJECTIVES: To explore caregiver's strain, the relationship between social support and caregiver's strain and the predictors of caregiver's strain among mothers with school-aged intellectually disabled children in Taiwan. BACKGROUND: Strain is a common condition among mothers who take care of intellectually disabled children; this correspondingly reduces their ability to care for children, thereby affecting the functioning of the entire family. Yet, there have been very few studies on caregivers of intellectually disabled children of school age. DESIGN: Cross-section correlational design. METHODS: Data collection consisted of face-to-face interviews combined with a structured questionnaire. Instruments employed were the Caregiver Strain Index, Social Support Scale and three open-ended questions. In total, 127 mothers completed the questionnaire. RESULTS: Results showed that mothers with intellectually disabled children had a rather high level of strain and received inadequate social support. Social support and strain had a significant and negative correlation. Stepwise regression analysis revealed that mothers' health status, social support and amount of time spent as a caregiver, as well as the intellectually disabled children's dependent degree of daily living activity, were major predictors of caregiver's strain, which accounted for 38.4% of the total variance. CONCLUSIONS: The results provide a guide for healthcare professionals in designing effective interventions and preventive care to reduce the level of strain in mothers with intellectually disabled children. This, in turn, could improve the quality of life of the mother and her family. RELEVANCE TO CLINICAL PRACTICE: In Taiwan, care of intellectually disabled children is primarily provided by family members. Therefore, we should emphasise family-centred care to enable healthcare professionals to become more effective as case managers in local clinics, schools and communities.

9. Brief Report: Driving Hazard Perception in Autism
Sheppard E et al.
University of Nottingham
J Autism Dev Disord. 2009 Nov 5. [Epub ahead of print]
$ http://www.springerlink.com/content/j364n2568517434j/

This study investigated whether individuals with ASD (autistic spectrum disorders) are able to identify driving hazards, given their difficulties processing social information, Klin et al. (Archives of General Psychiatry 59: 809-816, 2002). Twenty-three adult males with ASD and 21 comparison participants viewed 10 video clips containing driving hazards. In half of the clips the source of the hazard was a visible person (social); in the other half the source was a car (non-social). Participants with ASD identified fewer social hazards than the comparison participants (U = 163.00, N = 44, p < .05) but not non-social. Participants with ASD were also slower to respond than comparison participants, F(1,40) = 4.93, p < .05. This suggests that, although people with ASD can perceive driving hazards they may have specific difficulty identifying them if they involve a person.

10. Why is visual search superior in autism spectrum disorder?
Joseph RM et al.
Boston University School of Medicine
Dev Sci. 2009 Nov;12(6):1083-96.
$ http://www3.interscience.wiley.com/cgi-bin/fulltext/122413663/PDFSTART

This study investigated the possibility that enhanced memory for rejected distractor locations underlies the superior visual search skills exhibited by individuals with autism spectrum disorder (ASD). We compared the performance of 21 children with ASD and 21 age- and IQ-matched typically developing (TD) children in a standard static search task and a dynamic search task, in which targets and distractors randomly changed locations every 500 ms, precluding the use of memory in search. Children with ASD exhibited overall faster reaction time (RT) relative to TD children, and showed no disruption in search efficiency in the dynamic condition, discounting the possibility that memory for rejected distractors augments their visual search abilities. Analyses of RT x set size functions showed no group differences in slopes but lower intercepts for the ASD group in both static and dynamic search, suggesting that the ASD advantage derived from non-search processes, such as an enhanced ability to discriminate between targets and distractors at the locus of attention. Eye-movement analyses revealed that the ASD and TD groups were similar in the number and spatial distribution of fixations across the search array, but that fixation duration was significantly shorter among children with ASD. Lower intercepts in static search were related to increased symptom severity in children with ASD. In summary, ASD search superiority did not derive from differences in the manner in which individuals with ASD deployed their attention while searching, but from anomalously enhanced perception of stimulus features, which was in turn positively associated with autism symptom severity.

11. Mortality in Autism: A Prospective Longitudinal Community-Based Study
Gillberg C et al.
J Autism Dev Disord. 2009 Oct 17. [Epub ahead of print]
$ http://www.springerlink.com/content/j036225u28551h57/

The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962-1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (>/=18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females. Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism "per se" actually carries an increased mortality risk.

12. Involvement of Youths with Autism Spectrum Disorders or Intellectual Disabilities in Multiple Public Service Systems
Brookman-Frazee L et al.
J Ment Health Res Intellect Disabil. 2009 Jul 1;2(3):201-219.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2757308/pdf/nihms119264.pdf

The objectives of this study were to estimate the prevalence of autism spectrum disorders (ASD) and intellectual disability (ID) among youths active in at least one of five public service systems - mental health [MH], educational services for youth with serious emotional disturbance [SED], child welfare [CW], juvenile justice [JJ], and alcohol and drug services [AD].This study also reports the characteristics and patterns of system involvement among these youths. Results indicate that approximately 12% of a random sample of youths involved in these public service systems had ID or ASD. These disabilities were particularly prevalent in youth in the SED (25%), MH (13%), and CW (13%) systems and were less prevalent in the JJ and AD systems (4% each). Youths with ID or ASD were more likely than other youths to be Caucasian, have a higher socioeconomic status, and be more likely to have externalizing psychiatric and other problems. Of those with ASD or ID, approximately one third were served in more than one service system, with the MH and SED systems most likely to be serving youths with externalizing psychiatric disorders. These findings have important implications for service provision, treatment planning, and workforce development.

13. Sleep patterns in autism spectrum disorders
Johnson KP, Giannotti F, Cortesi F.
Oregon Health & Science University
Child Adolesc Psychiatr Clin N Am. 2009 Oct;18(4):917-28.
$ http://www.childpsych.theclinics.com/article/S1056-4993%2809%2900032-7/abstract

Like children with other developmental disabilities, children with autism spectrum disorders suffer from sleep problems at a greater rate than typically developing children. It is increasingly recognized that addressing these sleep problems may improve daytime functioning and decrease family stress. The sleep problems experienced by children with autism spectrum disorders are presented in this article.

14. An increased rate of sleep disorders was found to be associated with thimerosal injections (Verstraeten et al 1999; CDC)
Reviewed: http://www.safeminds.org/research/library/GenerationZeroPowerPoint.pdf

15. Sleep problems in autism spectrum disorders: prevalence, nature, & possible biopsychosocial aetiologies
Richdale AL, Schreck KA.
Olga Tennison Autism Research Centre
Sleep Med Rev. 2009 Dec;13(6):403-11. Epub 2009 Apr 24.
http://www.ncbi.nlm.nih.gov/pubmed/19398354

As considerably more people are diagnosed with an autism spectrum disorder (ASD), interest in the associated behaviours, including sleep problems has increased. This has resulted in a subsequent increase in the research related to the sleep problems occurring in people with an ASD. This article summarizes and evaluates the current literature related to a) the higher prevalence of a sleep problem compared to typically developing children, b) the specific types of sleep problems for people with an ASD, and c) the possible aetiology of sleep problems in the ASDs within a biopsychosocial framework. It is concluded that recent studies confirm that the majority of this population are likely to experience sleep difficulties, with settling issues in children with an ASD the most commonly reported. However, exploration of the types of sleep difficulties and associated aetiological factors in the ASDs is still in its infancy.

16. Set-shifting in children with autism spectrum disorders: reversal shifting deficits on the Intradimensional/Extradimensional Shift Test correlate with repetitive behaviors
Yerys BE, Wallace GL, Harrison B, Celano MJ, Giedd JN, Kenworthy LE.
Children's National Medical Center
Autism. 2009 Sep;13(5):523-38.
$ http://aut.sagepub.com/cgi/reprint/13/5/523

Research examining set-shifting has revealed significant difficulties for adults with autism spectrum disorders (ASDs). However, research with high-functioning children with ASDs has yielded mixed results. The current study tested 6- to 13-year-old high-functioning children with ASD and typically developing controls matched on age, gender, and IQ using the Intradimensional/Extradimensional (ID/ED) Shift Test from the Cambridge Neuropsychological Test Automated Battery. Children with ASDs completed as many ED shifts and reversal ED shifts as controls; however, they made significantly more errors than controls while completing the ED reversal shifts. Analyses on a subset of cases revealed a significant positive correlation between ED reversal errors and the number of repetitive behavior symptoms in the ASD group. These findings suggest that high-functioning children with ASDs require additional feedback to shift successfully. In addition, the relationship between set-shifting and non-social symptoms suggests its utility as a potentially informative intermediate phenotype in ASDs.

17. Enhancing Emotion Recognition in Children with Autism Spectrum Conditions: An Intervention Using Animated Vehicles with Real Emotional Faces
Golan O et al.
Cambridge University
J Autism Dev Disord. 2009 Sep 11. [Epub ahead of print]
$ http://www.springerlink.com/content/y4164n56855305p0/

This study evaluated The Transporters, an animated series designed to enhance emotion comprehension in children with autism spectrum conditions (ASC). n = 20 children with ASC (aged 4-7) watched The Transporters everyday for 4 weeks. Participants were tested before and after intervention on emotional vocabulary and emotion recognition at three levels of generalization. Two matched control groups of children (ASC group, n = 18 and typically developing group, n = 18) were also assessed twice without any intervention. The intervention group improved significantly more than the clinical control group on all task levels, performing comparably to typical controls at Time 2. We conclude that using The Transporters significantly improves emotion recognition in children with ASC. Future research should evaluate the series' effectiveness with lower-functioning individuals.

18. Faces do not capture special attention in children with autism spectrum disorder: a change blindness study
Kikuchi Y, Senju A, Tojo Y, Osanai H, Hasegawa T.
Child Dev. 2009 Sep-Oct;80(5):1421-33.
$ http://www3.interscience.wiley.com/journal/122597263/abstract

Two experiments investigated attention of children with autism spectrum disorder (ASD) to faces and objects. In both experiments, children (7- to 15-year-olds) detected the difference between 2 visual scenes. Results in Experiment 1 revealed that typically developing children (n = 16) detected the change in faces faster than in objects, whereas children with ASD (n = 16) were equally fast in detecting changes in faces and objects. These results were replicated in Experiment 2 (n = 16 in children with ASD and 22 in typically developing children), which does not require face recognition skill. Results suggest that children with ASD lack an attentional bias toward others' faces, which could contribute to their atypical social orienting.

19. The development of emotion recognition in individuals with autism
Rump KM, Giovannelli JL, Minshew NJ, Strauss MS.
University of Pittsburgh
Child Dev. 2009 Sep-Oct;80(5):1434-47.
$ http://www3.interscience.wiley.com/journal/122597260/abstract

Emotion recognition was investigated in typically developing individuals and individuals with autism. Experiment 1 tested children (5-7 years, n = 37) with brief video displays of facial expressions that varied in subtlety. Children with autism performed worse than the control children. In Experiment 2, 3 age groups (8-12 years, n = 49; 13-17 years, n = 49; and adults n = 45) were tested on the same stimuli. Whereas the performance of control individuals was best in the adult group, the performance of individuals with autism was similar in all age groups. Results are discussed with respect to underlying cognitive processes that may be affecting the development of emotion recognition in individuals with autism.

20. Healthcare for children with autism: the Autism Treatment Network
Coury D, Jones NE, Klatka K, Winklosky B, Perrin JM.
Nationwide Children's Hospital, Columbus, Ohio
Curr Opin Pediatr. 2009 Dec;21(6):828-32.

PURPOSE OF REVIEW: Autism spectrum disorders (ASDs) are a group of a neurodevelopmental disorders affecting social, communicative, and behavioral functioning. ASD is a heterogeneous group of disorders, often accompanied by associated medical issues. Thus, the development of effective treatments is a complex task requiring consideration of diverse etiologic and phenotypic characteristics. Recent attention to the diagnosis and treatment of medical conditions in ASD children has led to the formation of a new international collaboration to improve autism care, the Autism Treatment Network (ATN). RECENT FINDINGS: Numerous studies have highlighted the high prevalence of gastrointestinal and sleep disorders among ASD children. Problems in communication - including being nonverbal - make the diagnosis and treatment of these conditions more difficult. Although a number of studies suggest links between neurologic impairments and gastrointestinal dysfunction and disordered sleep, these relationships remain unproven. Recent work by the ATN has begun the development of clinical guidelines in these areas, based on clinical consensus, adapting the model developed by the Cystic Fibrosis Foundation. New funding has also supported the network's development of a robust clinical research program focused on improving the physical health and care of children with ASD. These efforts promise more systematic and consistent approaches to diagnosis and treatment of these conditions. SUMMARY: Improved understanding of the underlying pathology of ASD and associated conditions, and the development of a common purpose across multiple treating sites, can improve the consistent and coordinated healthcare of children with autism.

21. Treatment outcomes for severe feeding problems in children with autism spectrum disorder
Laud RB, Girolami PA, Boscoe JH, Gulotta CS.
The Kennedy Krieger Institute laud@kennedykrieger.org
Behav Modif. 2009 Sep;33(5):520-36. Epub 2009 Sep 10.
$ http://bmo.sagepub.com/cgi/reprint/33/5/520

There is abundant research to support that children with autism spectrum disorder (ASD) exhibit challenging feeding behaviors. Despite increase in empirical evidence supporting the role of behavior analysis in treating severe feeding problems, evaluation of the short- and long-term effects of these treatments for a large group of children with ASD is warranted. The purpose of the current study was to evaluate treatment outcomes of an interdisciplinary feeding program for 46 children with ASD. A retrospective chart analysis indicated these children were treated successfully overall and follow-up data suggest gains were maintained following discharge from the program.

22. Qigong massage treatment for sensory and self-regulation problems in young children with autism: a randomized controlled trial
Silva LM, Schalock M, Ayres R, Bunse C, Budden S.
Western Oregon University
Am J Occup Ther. 2009 Jul-Aug;63(4):423-32.
$ http://www1.aota.org/ajot/abstract.asp?IVol=63&INum=4&ArtID=6&Date=July/August%202009

Autism is commonly associated with sensory and self-regulatory disturbances. This article presents a randomized controlled study evaluating the effect of a 5-month intervention directed toward improving sensory impairment, digestion, and sleep in 46 children with autism < age 6. The intervention, Qigong Sensory Training (QST), is a qigong massage intervention based in Chinese medicine. It is two-pronged: Trainers work with children directly 20 times over 5 months, and parents give the massage daily to their children. Improvement was evaluated in two settings--preschool and home--by teachers (blind to group) and parents. Teacher evaluations showed that treated children had significant classroom improvement of social and language skills and reduction in autistic behavior compared with wait-list control participants. These findings were confirmed by parent data, indicating that the gains had generalized across contexts. A model and supporting data for understanding and treating sensory and self-regulation problems in autism is presented.

23. Teaching empathy skills to children with autism
Schrandt JA, Townsend DB, Poulson CL.
J Appl Behav Anal. 2009 Spring;42(1):17-32.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2649842/pdf/jaba-42-01-17.pdf

The purpose of this study was to teach empathetic responding to 4 children with autism. Instructors presented vignettes with dolls and puppets demonstrating various types of affect and used prompt delay, modeling, manual prompts, behavioral rehearsals, and reinforcement to teach participants to perform empathy responses. Increases in empathetic responding occurred systematically with the introduction of treatment across all participants and response categories. Furthermore, responding generalized from training to nontraining probe stimuli for all participants. Generalization occurred from dolls and puppets to actual people in a nontraining setting for 2 participants. Generalization was observed initially to the nontraining people and setting for the other participants, but responding subsequently decreased to baseline levels. Introduction of treatment in this setting produced rapid acquisition of target skills.

24. Helping families for caring children with autistic spectrum disorders
Ghanizadeh A, Alishahi MJ, Ashkani H.
Arch Iran Med. 2009 Sep;12(5):478-82.
http://www.ams.ac.ir/AIM/NEWPUB/09/12/5/009.pdf

Many families are directly involved in caring of their children with the lifelong autistic spectrum disorders. Sometimes, they are the victims of their children's behaviors. The family, including siblings, may have to explain the children's behaviors to others. Their mothers have poorer mental health with difficulties in family adaptability and cohesion. Its burden is not just limited to psychologic aspects but on the quality of life, economic aspects, and parent-child relationship. This is a narrative review of some of the aspects that families of children with autistic spectrum disorders are facing.

25. Loneliness and Social Support in Adolescent Boys with Autism Spectrum Disorders
Lasgaard M, Nielsen A, Eriksen ME, Goossens L.
Aarhus University
J Autism Dev Disord. 2009 Aug 15. [Epub ahead of print]
$ http://www.springerlink.com/content/b47p2q5u7g7236j8/

Loneliness and perceived social support were examined in 39 adolescent boys with autism spectrum disorders (ASD) by means of a self-labeling loneliness measure, the UCLA Loneliness Scale (third version), and the Social Support Scale for Children. Twenty-one percent of the boys with ASD described themselves as often or always feeling lonely. Compared with 199 boys from regular schools in a national probability study, ASD was strongly associated with often or always feeling lonely (OR: 7.08, p < .0005), as well as with a higher degree of loneliness (F(1,229) = 11.1, p < .005). Perceived social support from classmates, parents, and a close friend correlated negatively with loneliness in ASD. The study, therefore, indicates a high occurrence of loneliness among adolescent boys with ASD and points at perceived social support as an important protective factor.

26. Fundamental Movement Skills and Autism Spectrum Disorders
Staples KL, Reid G.
McGill University
J Autism Dev Disord. 2009 Aug 15. [Epub ahead of print]
$ http://www.springerlink.com/content/3mur3g6223611852/

Delays and deficits may both contribute to atypical development of movement skills by children with ASD. Fundamental movement skills of 25 children with autism spectrum disorders (ASD) (ages 9-12 years) were compared to three typically developing groups using the Test of Gross Motor Development (TGMD-2). The group matched on chronological age performed significantly better on the TGMD-2. Another comparison group matched on movement skill demonstrated children with ASD perform similarly to children approximately half their age. Comparisons to a third group matched on mental age equivalence revealed the movement skills of children with ASD are more impaired than would be expected given their cognitive level. Collectively, these results suggest the movement skills of children with ASD reflect deficits in addition to delays.

27. "With concord of sweet sounds...": new perspectives on the diversity of musical experience in autism and other neurodevelopmental conditions
Heaton P, Allen R.
Ann N Y Acad Sci. 2009 Jul;1169:318-25.
$ http://www3.interscience.wiley.com/journal/122522468/abstract

Questions about music's evolution and functions have long excited interest among scholars. More recent theoretical accounts have stressed the importance of music's social origins and functions. Autism and Williams syndrome, neurodevelopmental disorders supposedly characterized by contrasting social and musical phenotypes, have been invoked as evidence for these. However, empirical data on social skills and deficits in autism and Williams syndrome do not support the notion of contrasting social phenotypes: research findings suggest that the social deficits characteristic of both disorders may increase rather than reduce the importance of music. Current data do not allow for a direct comparison of musical phenotypes in autism and Williams syndrome, although it is noted that deficits in music cognition have been observed in Williams syndrome, but not in autism. In considering broader questions about musical understanding in neurodevelopmental disorders, we conclude that intellectual impairment is likely to result in qualitative differences between handicapped and typical listeners, but this does not appear to limit the extent to which individuals can derive benefits from the experience of listening to music.

28. Comparative study on self-perceived health of parents of children with autism spectrum disorders and parents of non-disabled children in Croatia
Benjak T, Vuletić Mavrinac G, Pavić Simetin I.
Croat Med J. 2009 Aug;50(4):403-9.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728381/pdf/CroatMedJ_50_0403.pdf

AIM: To assess self-perceived health of parents of children with autism spectrum disorders (ASD) in comparison with those of parents of non-disabled children. METHODS: A total of 350 parents participated in the study: 178 parents of children with ASD (71% response rate) and 172 parents of non-disabled children matched by age, education, and place of living. Parents' self-perceived health was assessed using the Croatian version of the health status questionnaire SF-36, while socio-demographic information, chronic medical conditions, and needs were assessed by a general questionnaire. RESULTS: For all dimensions of health, except physical health, parents of children with ASD had significantly poorer self-perceived health and reported significantly more deteriorated health in the last year than the control group (P<0.001). They also reported more psychological disorders (11% vs 4.3%), which was the largest difference in specified chronic medical conditions. Hundred twenty six (71%) parents of children with ASD thought that enhancing different policy measures (economic, social, educational) could advance their and their children's health and well-being. CONCLUSION: Parents of children with ASD had poorer health than the control group in all components, except physical health. Because parents are the main providers of support for children with ASD, preserving parents' good health and well-being is a precondition for an optimal care for children. Therefore, current system for treating children with ASD in Croatia should also include permanent improvement of parents' health and well-being.

29. Daily Experiences Among Mothers of Adolescents and Adults with Autism Spectrum Disorder
Smith LE et al.
Waisman Center, University of Wisconsin-Madison
J Autism Dev Disord. 2009 Aug 5. [Epub ahead of print]
$ http://www.springerlink.com/content/757547v370360005/

In the present study, 96 co-residing mothers of adolescents and adults with an autism spectrum disorder (ASD) participated in an 8-day diary study and reported on their daily experiences. In comparison with a nationally representative sample of mothers of children without disabilities, mothers of adolescent and adult children with ASD spent significantly more time providing childcare and doing chores, and less time in leisure activities. Fatigue, arguments, avoided arguments, and stressful events were also more common among mothers of individuals with ASD. However, mothers of individuals with ASD reported similar levels of positive interactions and volunteerism as the comparison group. Daily experiences were subsequently related to well-being in both groups. These findings highlight the need for family support services.

30. Gynecologic Issues of Adolescents with Down Syndrome, Autism, and Cerebral Palsy
Burke LM, Kalpakjian CZ, Smith YR, Quint EH.
University of Michigan, Departments of Obstetrics and Gynecology and Physical Medicine and Rehabilitation (CK), Ann Arbor, Michigan, USA.
J Pediatr Adolesc Gynecol. 2009 Jul 28. [Epub ahead of print]
http://linkinghub.elsevier.com/retrieve/pii/S1083-3188%2809%2900181-8

STUDY OBJECTIVE: The gynecologic issues of adolescents with disabilities are understudied. The purpose of this study was to identify and compare the presenting complaints, treatments, and follow-up of adolescent girls with Down syndrome (DS), autism, and cerebral palsy (CP) presenting to a specialized gynecologic clinic for women with developmental disabilities. SETTING: Outpatient gynecology clinic. PARTICIPANTS: Forty four adolescents (<21 y); 13 with DS, 14 with autism, and 17 with CP who presented to the clinic from 1999 to 2006. INTERVENTIONS: None. MAIN OUTCOME MEASURES: A retrospective review of the electronic medical records to collect data on age at presentation to clinic, ethnicity, menstrual history, chief complaint, treatment, and follow-up. RESULTS: Mean age at presentation to clinic was 15+/-3.5 years, and age of menarche was 12.5+/-2 years; age at menarche did not significantly differ between groups. The most frequent complaints were irregular bleeding (n=10) and mood/behavioral changes (n=6). Girls with autism were significantly (chi(2)=8.89, P=.012) more likely to present with behavioral issues than the other 2 groups. Initial management for the behavior issues in the autism group included nonsteroidal anti-inflammatory drugs (NSAID), oral contraceptives, and education. CONCLUSION: The most common gynecologic complaints of adolescent girls with DS, autism, and CP centered on menstruation and mood disorders. Patients with autism were more likely to present with behavioral issues related to the onset of periods.

31. Sleep behaviors and sleep quality in children with autism spectrum disorders
Souders MC et al.
Sleep. 2009 Dec 1;32(12):1566-78.
University of Pennsylvania School of Nursing and School of Medicine
(article free after 6 months)
http://www.journalsleep.org/ViewAbstract.aspx?pid=27635

STUDY OBJECTIVES: (1) Compare sleep behaviors of children with autism spectrum disorders (ASD) with sleep behaviors of typically developing (TD) children using the Children's Sleep Habits Questionnaire (CSHQ); (2) compare sleep quality--defined as mean activity, sleep latency, number of awakenings, sleep efficiency and total sleep time--of the cohort of children with ASD and TD, as measured by 10 nights of actigraphy; and (3) estimate the prevalence of sleep disturbances in the ASD and TD cohorts. DESIGN: Descriptive cross-sectional study. SETTING: The Children's Hospital of Philadelphia. PARTICIPANTS: Randomly selected children from the Regional Autism Center. The ASD cohort of 59 children, aged 4 to 10 years, (26 with autism, 21 with pervasive developmental disorder-not otherwise specified [PDD-NOS], and 12 with Asperger disorder) were compared with 40 TD control subjects. MEASUREMENTS AND RESULTS: The CSHQ, sleep diaries, and 10 nights of actigraphy using the Sadeh algorithm of children with ASD and TD control subjects were compared. CSHQ showed 66.1% of parents of children with ASD (62.5% autism, 76.2% PDD-NOS, 58.3% Asperger disorder) and 45% of parents of the control subjects reported that their children had sleep problems. Actigraphic data showed that 66.7% of children with ASD (75% autism, 52.4% PDD-NOS, 75% Asperger disorder) and 45.9% of the control subjects had disturbed sleep. CONCLUSIONS: The prevalence estimate of 45% for mild sleep disturbances in the TD cohort highlights pediatric sleep debt as a public health problem of concern. The prevalence estimate of 66% for moderate sleep disturbances in the ASD cohort underscores the significant sleep problems that the families of these children face. The predominant sleep disorders in the ASD cohort were behavioral insomnia sleep-onset type and insomnia due to PDD.

32. Mechanistic biomarkers for autism treatment
Hendren RL, Bertoglio K, Ashwood P, Sharp F.
Med Hypotheses. 2009 Dec;73(6):950-4.
$ http://tinyurl.com/y8g3n25

OBJECTIVE: Autism is a syndrome with a number of etiologies with differing mechanisms that lead to abnormal development. This review highlights the need to identify autism subgroups as they each might require unique approaches for prevention or treatment. METHODS: Targeting treatments to specific mechanisms and utilizing biomarkers can more rapidly advance our understanding of how to classify and treat autism subgroups based on translational mechanisms. We illustrate this approach using mechanisms that may influence the course of autism and provide rationale for selected biomarkers that could guide treatments targeted anywhere from DNA to symptom expression. CONCLUSIONS: The use of potential biomarkers that point to specific mechanisms of disordered neurodevelopment will help identify meaningful subtypes of autism and will help tailor treatment or prevention strategies for each mechanism rather than solely to a symptom category.

33. Seven-star needle stimulation improves language and social interaction of children with autistic spectrum disorders
Chan AS, Cheung MC, Sze SL, Leung WW.
The Chinese University of Hong Kong
Am J Chin Med. 2009;37(3):495-504.
$ http://www.worldscinet.com/ajcm/37/3703/S0192415X09007004.html

This is a randomized controlled trial that aimed to evaluate the effect of the Seven-star Needle Stimulation treatment on children with Autistic Spectrum Disorders (ASD). Thirty-two children with ASD were assigned randomly into the treatment and control groups. Children in the treatment group underwent 30 sessions of stimulation over 6 weeks, while children in the control group were on a waiting list and did not receive treatment during this period of time. Intervention consisted of a treatment regime comprising of 30 sessions of Seven-star Needle Stimulation, delivered over 6 weeks. Each session lasted 5 to 10 min, children in the treatment group were stimulated at the front and back sides of their body and the head by using Seven-star Needles. The change in the children's behavior was evaluated using parents' report and neurophysiological changes were measured by quantitative EEG (qEEG). Results showed that the treatment group demonstrated significant improvement in language and social interaction, but not in stereotyped behavior or motor function, compared to the control group. qEEG spectral amplitudes in the treatment, but not in the control group, were also reduced significantly. The results suggested that Seven-star Needle Stimulation might be an effective intervention to improve language and social functioning of children with ASD.

34. Sex Differences in Autism Spectrum Disorder: An Examination of Developmental Functioning, Autistic Symptoms, and Coexisting Behavior Problems in Toddlers
Hartley SL, Sikora DM.
University of Wisconsin-Madison
J Autism Dev Disord. 2009 Jul 7. [Epub ahead of print]
$ http://www.springerlink.com/content/d77877601075m0wr/

Little is known about the female presentation of autism spectrum disorder (ASD) during early childhood. We investigated sex differences in developmental profiles using the Mullen Scales of Early Learning, autistic symptoms on the ADOS-G, and coexisting behavior problems on the CBCL in 157 boys and 42 girls with ASD aged 1.5-3.9 years. Overall, boys and girls evidenced a markedly similar pattern of developmental profiles, autism symptoms, and coexisting behavior problems, although subtle differences exist. Boys and girls evidenced a similar pattern of developmental strengths and weaknesses. Girls with ASD evidenced greater communication deficits than boys and boys evidenced more restricted, repetitive, and stereotyped behavior than girls. Girls exhibited more sleep problems and anxious or depressed affect than boys.

35. What are infant siblings teaching us about autism in infancy?
Rogers SJ.
University of California Davis
Autism Res. 2009 Jun;2(3):125-37.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791538/pdf/nihms149156.pdf

International research to understand infant patterns of development in autism spectrum disorders (ASDs) has recently focused on a research paradigm involving prospective longitudinal studies of infant siblings of children with autism. Such designs use a comparison group of infant siblings without any familial risks (the low-risk group) to gather longitudinal information about developmental skills across the first 3 years of life, followed by clinical diagnosis of ASD at 36 months. This review focuses on five topics: presence of ASD in the infant sibling groups, patterns and characteristics of motor development, patterns and characteristics of social and emotional development, patterns and characteristics of intentional communication, both verbal and nonverbal, and patterns that mark the onset of behaviors pathognomonic for ASD. Symptoms in all these areas typically begin to be detected during the age period of 12-24 months in infants who will develop autism. Onset of the symptoms occurs at varying ages and in varying patterns, but the pattern of frank loss of skills and marked regression reported from previous retrospective studies in 20-30% of children is seldom reported in these infant sibling prospective studies. Two surprises involve the very early onset of repetitive and unusual sensory behaviors, and the lack of predictive symptoms at the age of 6 months. Contrary to current views that autism is a disorder that profoundly affects social development from the earliest months of life, the data from these studies presents a picture of autism as a disorder involving symptoms across multiple domains with a gradual onset that changes both ongoing developmental rate and established behavioral patterns across the first 2-3 years of life.

36. A prospective study of prenatal mercury exposure from maternal dental amalgams and autism severity
Geier DA, Kern JK, Geier MR.
Acta Neurobiol Exp (Wars). 2009;69(2):189-97.
http://tinyurl.com/yl5vwcc

Dental amalgams containing 50% mercury (Hg) have been used in dentistry for the last 150 years, and Hg exposure during key developmental periods was associated with autism spectrum disorders (ASDs). This study examined increased Hg exposure from maternal dental amalgams during pregnancy among 100 qualifying participants born between 1990-1999 and diagnosed with DSM-IV autism (severe) or ASD (mild). Logistic regression analysis (age, gender, race, and region of residency adjusted) by quintile of maternal dental amalgams during pregnancy revealed the ratio of autism:ASD (severe:mild) were about 1 (no effect) for < or =5 amalgams and increased for > or =6 amalgams. Subjects with > or =6 amalgams were 3.2-fold significantly more likely to be diagnosed with autism (severe) in comparison to ASD (mild) than subjects with < or =5 amalgams. Dental amalgam policies should consider Hg exposure in women before and during the child-bearing age and the possibility of subsequent fetal exposure and adverse outcomes.

37. Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay
Estes A, Munson J, Dawson G, Koehler E, Zhou XH, Abbott R.
University of Washington
Autism. 2009 Jul;13(4):375-87.
$ http://aut.sagepub.com/cgi/reprint/13/4/375

Parents of children with developmental disabilities, particularly autism spectrum disorders (ASDs), are at risk for high levels of distress. The factors contributing to this are unclear. This study investigated how child characteristics influence maternal parenting stress and psychological distress. Participants consisted of mothers and developmental-age matched preschool-aged children with ASD (N = 51) and developmental delay without autism (DD) ( N = 22). Evidence for higher levels of parenting stress and psychological distress was found in mothers in the ASD group compared to the DD group. Children's problem behavior was associated with increased parenting stress and psychological distress in mothers in the ASD and DD groups. This relationship was stronger in the DD group. Daily living skills were not related to parenting stress or psychological distress. Results suggest clinical services aiming to support parents should include a focus on reducing problem behaviors in children with developmental disabilities.

38. Patterns of growth in adaptive social abilities among children with autism spectrum disorders
Anderson DK, Oti RS, Lord C, Welch K.
J Abnorm Child Psychol. 2009 Oct;37(7):1019-34.
University of Michigan Autism and Communication Disorders Center
$ http://www.springerlink.com/content/380751320665h3x7/

Adaptive social skills were assessed longitudinally at approximately ages 2, 3, 5, 9, and 13 years in a sample of 192 children with a clinical diagnosis of autism (n = 93), PDD-NOS (n = 51), or nonspectrum developmental disabilities (n = 46) at age 2. Growth curve analyses with SAS proc mixed were used to analyze social trajectories over time. Both individual characteristics and environmental resources emerged as key predictors of adaptive social behavior outcome. The gap between children with autism and the other two diagnostic groups widened with time as the social skills of the latter groups improved at a higher rate. However, within diagnostic groups, improvement ranged from minimal to very dramatic. Children with autism most at risk for problems with social adaptive abilities later in life can be identified with considerable accuracy at a very young age so they can be targeted for appropriate early intervention services.

39. Laughter differs in children with autism: an acoustic analysis of laughs produced by children with and without the disorder
Hudenko WJ, Stone W, Bachorowski JA.
Vanderbilt University
J Autism Dev Disord. 2009 Oct;39(10):1392-400. Epub 2009 May 16.
$ http://www.springerlink.com/content/kn54147684771vm0/

Few studies have examined vocal expressions of emotion in children with autism. We tested the hypothesis that during social interactions, children diagnosed with autism would exhibit less extreme laugh acoustics than their nonautistic peers. Laughter was recorded during a series of playful interactions with an examiner. Results showed that children with autism exhibited only one type of laughter, whereas comparison participants exhibited two types. No group differences were found for laugh duration, mean fundamental frequency (F(0)) values, change in F(0), or number of laughs per bout. Findings are interpreted to suggest that children with autism express laughter primarily in response to positive internal states, rather than using laughter to negotiate social interactions.

40. Melatonin in treatment of chronic sleep disorders in adults with autism: a retrospective study
Galli-Carminati G, Deriaz N, Bertschy G.
University Hospital of Geneva, Switzerland
Swiss Med Wkly. 2009 May 16;139(19-20):293-6.
http://www.smw.ch/dfe/set_archiv.asp?target=smw-12342

BACKGROUND: Melatonin may be used to treat sleep disorders in both children and adults with intellectual disability. The evidence for its efficacy, potential adverse effects and drug interactions are reviewed in the context of prescription of melatonin to patients with autism. METHODS: This study presents the use of melatonin to treat severe circadian sleep-wake disturbances in 6 adults with autism. Melatonin was initiated at a daily dose of 3 mg at nocturnal bedtime. If this proved ineffective, the melatonin dose was titrated over the following 4 weeks at increments of 3 mg/2 weeks up to a maximum of 9 mg, unless it was tolerated. Assessments included Clinical Global Impression-Severity (CGI-S) and CGI-Improvement (CGI-I). RESULTS: Melatonin administered in the evening dramatically improved the sleep-wake pattern in all patients. Melatonin appears to be effective in reducing sleep onset latency and is probably effective in improving nocturnal awakenings and total sleep time in adults with autism. Its effectiveness remained stable for the 6-month period of administration. Melatonin was well tolerated in all patients and no side effects were noted during the therapy. CONCLUSIONS: Melatonin appears to be promising as an efficient and seemingly safe alternative for treatment of severe circadian sleep disturbances in adults with autism. There may be heterogeneity of response depending on the nature of the sleep problem and cause of the intellectual disability or associated disabilities. Further studies are necessary before firm conclusions can be drawn and guidelines for the use of melatonin in people with autism formulated.

41. Twenty-year outcome for individuals with autism and average or near-average cognitive abilities
Farley MA et al.
University of Utah
Autism Res. 2009 Apr;2(2):109-18.
$ http://www3.interscience.wiley.com/journal/122267217/abstract

Previous studies found substantial variability in adult outcome for people with autism whose cognitive functioning was within the near-average and average ranges. This study examined adult outcome for 41 such individuals (38 men and 3 women) originally identified through an epidemiological survey of autism in Utah. Mean age at the time of their previous cognitive assessment was 7.2 years (SD=4.1, range=3.1-25.9 years) and at follow-up was 32.5 years (SD=5.7 years, range=22.3-46.4 years). Outcome measures included standardized assessments of diagnostic status, cognitive ability, and adaptive behavior. Additional information collected concerned demographic variables, indicators of independence, social relationships, medical and psychiatric conditions, and social service use. Outcomes for this sample were better than outcomes described in previous work on individuals with similar cognitive functioning. For example, half of the participants were rated as "Very Good" or "Good" on a global outcome measure. As in previous studies, there was considerable variability in measured cognitive ability over time. Over half of the sample had large gains or losses of cognitive ability of greater than 1 standard deviation. Cognitive gain was associated with better outcome, as was better adaptive functioning. While all participants had baseline IQs in the nonimpaired range, there was limited evidence to support the use of other early childhood variables to predict adult outcome.

42. Using a personal digital assistant to increase independent task completion by students with autism spectrum disorder
Mechling LC, Gast DL, Seid NH.
University of North Carolina
J Autism Dev Disord. 2009 Oct;39(10):1420-34. Epub 2009 May 23.
$ http://www.springerlink.com/content/g775654623875587/

In this study, a personal digital assistant (PDA) with picture, auditory, and video prompts with voice over, was evaluated as a portable self-prompting device for students with autism spectrum disorder (ASD). Using a multiple probe design across three cooking recipes and replicated with three students with ASD, the system was tested for its effectiveness in increasing independent performance across the multiple step tasks. In addition, data were recorded for the number and types of prompts used by the students across time. Results indicate that the students with ASD were able to adjust the prompt levels used on the PDA and to maintain their ability to use the device to independently complete recipes over time.

43. Movement planning and reprogramming in individuals with autism
Nazarali N, Glazebrook CM, Elliott D.
McMaster University
J Autism Dev Disord. 2009 Oct;39(10):1401-11. Epub 2009 May 23.
$ http://www.springerlink.com/content/9340837n26013252/

Two experiments explored how individuals with and without autism plan and reprogram movements. Participants were given partial or complete information regarding the location of the upcoming manual movement. In Experiment 1, direct information specified the hand or direction of the upcoming movement. These results replicated previous reports that participants with autism utilize advance information to prepare their movements in the same manner as their chronologically age matched peers. Experiment 2 examined how individuals respond to an unexpected change in the movement requirements. Participants received advance information about the hand and direction of the upcoming movement. On 20% of the trials participants needed to adjust either the hand or direction they had prepared. Overall, the individuals with autism had difficulty reprogramming already planned movements, particularly if a different effector was required.

44. Parental stress associated with caring for children with Asperger's syndrome or autism
Mori K, Ujiie T, Smith A, Howlin P.
Institute of Psychiatry, King's College, London
Pediatr Int. 2009 Jun;51(3):364-70. Epub 2008 Oct 9.
$ http://www3.interscience.wiley.com/journal/121433201/abstract

BACKGROUND: The levels of parental stress among parents of children with Asperger's syndrome in comparison with parents of children with autism are unknown in the Japanese population. METHODS: The stress levels in Japanese parents caring for children with Asperger's syndrome were compared with the stress levels found in Japanese parents caring for children with autism using the Parenting Stress Index/Short Form. RESULTS: In a sample of 193 families, both groups had a significant increase in parental stress levels. In addition, strong evidence was obtained for the presence of higher levels of parental stress in the Asperger's group compared with the parents of the autism group after controlling for the impact of confounders, F(5,187) = 9.11, P = 0.003. The elevated levels of parental stress found in the Asperger's group appeared to be attributable to characteristics associated with the child's basic behavior. The potential mechanism, implications and strategies for further research are discussed. CONCLUSION: There are significantly elevated parental stress levels in Japanese parents of children with Asperger's syndrome or autism. In addition, the total parental stress levels were significantly higher in parents of children with Asperger's syndrome than in parents of children with autism.

45. Increasing independence in autism spectrum disorders: a review of three focused interventions
Hume K, Loftin R, Lantz J.
University of North Carolina at Chapel Hill
J Autism Dev Disord. 2009 Sep;39(9):1329-38. Epub 2009 May 9.
$ http://www.springerlink.com/content/pnt41071w4126765/

The features of autism that inhibit the independent demonstration of skills, as well as three effective interventions for increasing independence, are explored in this review article. Independent performance may prove difficult for individuals with autism spectrum disorders (ASD) due to the core deficits of the disability, as well as executive function deficits that impact initiation and generalization. These difficulties, coupled with intervention strategies that encourage over-reliance on adult support, contribute to poor long term outcomes for adults with ASD in employment, housing, and relationship development. Self-monitoring, video modeling, and individual work systems each emphasize a shift in stimulus control from continuous adult management to an alternative stimulus and have proven successful in addressing executive function deficits and increasing independence.

46. Parent reports of sensory experiences of preschool children with and without autism: a qualitative study
Dickie VA, Baranek GT, Schultz B, Watson LR, McComish CS.
The University of North Carolina at Chapel Hill
Am J Occup Ther. 2009 Mar-Apr;63(2):172-81.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682212/pdf/nihms68388.pdf

This study describes sensory experiences of children with and without autism. Parents of 66 preschoolers (29 typically developing; 37 with autism) described situations in which their child had "good" and "bad" sensory experiences and their perception of how these situations felt to the child. The most common unpleasant experiences for both groups related to sound; the most common pleasant experiences involved touch and movement. Children with autism were reported to have more extreme or unusual experiences and negative food-related experiences than typically developing peers. Parental explanations for children's responses focused on the qualities of the child, stimulus, or context. Parents of children with autism were more likely to recognize elements in their children's experiences as being sensory and to attribute those responses to aspects of autism. Parents' positive response to the interview itself was an unexpected result with clinical relevance.

47. The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning
Rao PA, Beidel DC.
Kennedy Krieger Institute
Behav Modif. 2009 Jul;33(4):437-51. Epub 2009 May 12.
$ http://bmo.sagepub.com/cgi/reprint/33/4/437

The article discusses a study conducted to investigate the impact of children with high-functioning autism (HFA) on parental stress, sibling adjustment, and family functioning; the study involves a sample of parents of 15 children with HFA and parents of 15 matched control children who completed questionnaires measuring the dependent variables. The results indicate parents of children with HFA experience significantly more parenting stress than parents of children with no psychological disorder, which was found to be directly related to characteristics of the children. The study further shows that the higher intellectual functioning in children with HFA does not compensate for the stress associated with parenting children with autism spectrum disorders. Because the intervention efforts directed at children with HFA will not eliminate the child's primary symptoms, treatment programs may need to address parental stress, which in turn will help optimize treatment outcome for the child and the family.

49. Intention understanding in autism
Boria S et al.
Università di Parma, Parma, Italy
PLoS One. 2009;4(5):e5596. Epub 2009 May 18.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0005596

When we observe a motor act (e.g. grasping a cup) done by another individual, we extract, according to how the motor act is performed and its context, two types of information: the goal (grasping) and the intention underlying it (e.g. grasping for drinking). Here we examined whether children with autistic spectrum disorder (ASD) are able to understand these two aspects of motor acts. Two experiments were carried out. In the first, one group of high-functioning children with ASD and one of typically developing (TD) children were presented with pictures showing hand-object interactions and asked what the individual was doing and why. In half of the "why" trials the observed grip was congruent with the function of the object ("why-use" trials), in the other half it corresponded to the grip typically used to move that object ("why-place" trials). The results showed that children with ASD have no difficulties in reporting the goals of individual motor acts. In contrast they made several errors in the why task with all errors occurring in the "why-place" trials. In the second experiment the same two groups of children saw pictures showing a hand-grip congruent with the object use, but within a context suggesting either the use of the object or its placement into a container. Here children with ASD performed as TD children, correctly indicating the agent's intention. In conclusion, our data show that understanding others' intentions can occur in two ways: by relying on motor information derived from the hand-object interaction, and by using functional information derived from the object's standard use. Children with ASD have no deficit in the second type of understanding, while they have difficulties in understanding others' intentions when they have to rely exclusively on motor cues.

50. "All children can and should have the opportunity to learn": general education teachers' perspectives on including children with autism spectrum disorder who require AAC
Finke EH, McNaughton DB, Drager KD.
The Pennsylvania State University
Augment Altern Commun. 2009 Jun;25(2):110-22.
$ http://informahealthcare.com/doi/abs/10.1080/07434610902886206

A qualitative online focus group methodology was used to investigate the experiences of five elementary school teachers (grades K-5) who had included in their general education classrooms children with autism spectrum disorders (ASD) who required augmentative and alternative communication (AAC). Information was obtained from the participants in the following areas: (a) the benefits of educational inclusion, (b) the negative impacts of educational inclusion, (c) the challenges of educational inclusion, (d) the supports for educational inclusion, and (e) recommendations for other teachers and individuals involved in the inclusion process. Participants primarily chose to focus on inclusion as a beneficial practice for all involved, but did describe a few barriers and challenges of inclusion. The results are discussed as they relate to these themes and with reference to published literature. Recommendations for future directions are also presented.

51. Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder
Phelps KW, McCammon SL, Wuensch KL, Golden JA.
East Carolina University
J Intellect Dev Disabil. 2009 Jun;34(2):133-41.
http://informahealthcare.com/doi/abs/10.1080/13668250902845236

BACKGROUND: Past researchers have focused primarily on the associated negative impact of caring for a child with special needs. In this study, caregivers report the enrichment and stress of caring for a child with an autism spectrum disorder. METHOD: Eighty caregivers completed the Social Communication Questionnaire (SCQ), Effects of the Situation Questionnaire (ESQ), and Posttraumatic Growth Inventory (PTGI). Enrichment and stress scores were compared to symptom severity data and posttraumatic growth scores. RESULTS: Consistent with prior research, caregivers reported greater levels of stress than enrichment. On just over half of the stress/enrichment variables, parental ratings of stress and enrichment were negatively correlated. Scores of total stress and enrichment were not correlated to the severity of the individual's symptoms or caregivers' growth scores. CONCLUSIONS: These findings suggest that although stress is a major concern for caregivers, enrichment and growth may also occur in varying degrees.

52. Searching for acceptance: challenges encountered while raising a child with autism
Altiere MJ, von Kluge S.
Eastern Michigan University
J Intellect Dev Disabil. 2009 Jun;34(2):142-52.
http://informahealthcare.com/doi/abs/10.1080/13668250902845202

BACKGROUND: Autism, a severe childhood disorder, affects the family system in dramatic ways. METHOD: Fifty-two parents of children with autism were interviewed to explore their struggles and their successes qualitatively. RESULTS: Five challenges that emerged from these family's experiences were: Development, Questioning, Devastation, Solutions, and Growth. Every parent described the confusion that resulted from their child's behavioural presentation and the feelings of loss and devastation that occurred after discovering their child has autism. Parents, however, were swift and eager to mobilise resources to help their child, sometimes in any possible way. Almost every parent described significant, positive experiences that resulted from raising a child with autism, despite the hardships. CONCLUSIONS: The findings of this study provide important considerations for professionals and families.

53. Teaching Discrimination of Adult Gaze Direction to Children with Autism
Klein JL, Macdonald RF, Vaillancourt G, Ahearn WH, Dube WV.
New England Center for Children and Northeastern University.
Res Autism Spectr Disord. 2009 Jan 1;3(1):42-49.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2751861/pdf/nihms83692.pdf

Three young children diagnosed with autism did not reliably locate objects in the environment on the basis of an adult's gaze shifts. A training program designed to teach gaze following used the activation of remote controlled mechanical toys as both prompts and consequences. Over several training sessions, toy activation was progressively delayed following the adult's gaze-shift cues. All of the children eventually came to anticipate the toy activation and locate the target object on the basis of the adult's gaze-shift cue alone. Discrimination of another person's gaze direction is discussed in relation to joint attention deficits in children with autism.

54. 'Autistic' Local Processing Bias also Found in Children Gifted in Realistic Drawing
Drake JE, Redash A, Coleman K, Haimson J, Winner E.
Boston College
J Autism Dev Disord. 2010 Jan 5. [Epub ahead of print]
$ http://www.springerlink.com/content/c43238470u2vu24w/

We investigated whether typically-developing children with a gift for drawing realistically show the local processing bias seen in individuals with autism spectrum disorder (ASD). Twenty-seven 6-12 year-olds made an observational drawing (scored for level of realism) and completed three local processing tasks, and parents completed the Childhood Asperger Syndrome Test (CAST). Drawing score predicted local processing performance on all tasks independently of verbal IQ, age, and years of art lessons. Drawing score also predicted more frequent repetitive behaviors as assessed by the CAST. Thus, skill in realistic drawing is associated with a strong local processing bias and a tendency towards repetitive behaviors, showing that traits found in individuals with ASD irrespective of artistic talent are also found in typically developing children with artistic talent.

55. Economic cost of autism in the UK
Knapp M, Romeo R, Beecham J.
Kings College, London
Autism. 2009 May;13(3):317-36.
$ http://aut.sagepub.com/cgi/reprint/13/3/317

Autism has lifetime consequences, with potentially a range of impacts on the health, wellbeing, social integration and quality of life of individuals and families. Many of those impacts are economic. This study estimated the costs of autism spectrum disorders (ASDs) in the UK. Data on prevalence, level of intellectual disability and place of residence were combined with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be pound 2.7 billion each year. For adults, these costs amount to pound 25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately pound 1.23 million, and for someone with ASD without intellectual disability is approximately pound 0.80 million.

56. Sensory processing in adults with autism spectrum disorders
Crane L, Goddard L, Pring L.
University of London
Autism. 2009 May;13(3):215-28.
$ http://aut.sagepub.com/cgi/reprint/13/3/215

Unusual sensory processing has been widely reported in autism spectrum disorders (ASDs); however, the majority of research in this area has focused on children. The present study assessed sensory processing in adults with ASD using the Adult/Adolescent Sensory Profile (AASP), a 60-item self-report questionnaire assessing levels of sensory processing in everyday life. Results demonstrated that sensory abnormalities were prevalent in ASD, with 94.4 percent of the ASD sample reporting extreme levels of sensory processing on at least one sensory quadrant of the AASP. Furthermore, analysis of the patterns of sensory processing impairments revealed striking within-group variability in the ASD group, suggesting that individuals with ASD could experience very different, yet similarly severe, sensory processing abnormalities. These results suggest that unusual sensory processing in ASD extends across the lifespan and have implications regarding both the treatment and the diagnosis of ASD in adulthood.

This document prepared by
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy
April 2010