scholarly journals Post-diagnostic management and follow-up care for autism spectrum disorder

2019 ◽  
Vol 24 (7) ◽  
pp. 461-468 ◽  
Author(s):  
Angie Ip ◽  
Lonnie Zwaigenbaum ◽  
Jessica A Brian

Abstract Paediatricians and other primary care providers are well positioned to provide or coordinate ongoing medical and psychosocial care and support services for children with autism spectrum disorder (ASD). This statement provides recommendations and information on a range of interventions and resources, to help paediatric care providers optimize care for children with ASD and support their families. The management of ASD includes treating medical and psychiatric co-morbidities, behavioural and developmental interventions, and providing supportive social care services to enhance quality of life for affected children and families.

Autism ◽  
2020 ◽  
pp. 136236132096897
Author(s):  
Katharine E Zuckerman ◽  
Sarabeth Broder-Fingert ◽  
R Christopher Sheldrick

The American Academy of Pediatrics recommends autism spectrum disorder screening at the 18- and 24-month well-child visits. However, despite widespread toddler screening, many children are not diagnosed until school age, and delayed diagnosis is more common among low-income and minority children. Offering autism spectrum disorder screening at preschool well-child checks might reduce disparities and lower the overall age of diagnosis and service initiation. However, screening tools that span the preschool ages and are tailored for primary care are needed. Lay abstract Pediatric primary care providers check for autism signs, usually using a standard checklist, at 18- and 24-month well-child visits. When the checklist shows possible autism, children should be referred for additional treatment and evaluation with an autism specialist. However, many children with autism spectrum disorder are not detected as toddlers. Low-income and minority children are particularly likely to have a late autism spectrum disorder diagnosis. Checking for autism at preschool-aged well-child visits might be one way to identify autism spectrum disorder earlier, especially for low-income and minority children.


2019 ◽  
Vol 55 (4) ◽  
pp. 600-606 ◽  
Author(s):  
Muna Alshekaili ◽  
Naser Al‐Balushi ◽  
Mohammed Al‐Alawi ◽  
Hassan Mirza ◽  
Salim Al‐Huseini ◽  
...  

Autism ◽  
2019 ◽  
Vol 24 (3) ◽  
pp. 633-644 ◽  
Author(s):  
Micah O Mazurek ◽  
Gary Stobbe ◽  
Rachel Loftin ◽  
Beth A Malow ◽  
Mavara M Agrawal ◽  
...  

Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study developed and tested an adaptation of the Extension for Community Healthcare Outcomes model to train and mentor primary care providers ( n = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder. The Extension for Community Healthcare Outcomes Autism Transition program consisted of 12 weekly 1-h sessions connecting primary care providers to an interdisciplinary expert team via multipoint videoconferencing. Sessions included brief didactics, case-based learning, and guided practice. Measures of primary care provider self-efficacy, knowledge, and practice were administered pre- and post-training. Participants demonstrated significant improvements in self-efficacy regarding caring for youth/young adults with autism spectrum disorder and reported high satisfaction and changes in practice as a result of participation. By contrast, no significant improvements in knowledge or perceived barriers were observed. Overall, the results indicate that the model holds promise for improving primary care providers’ confidence and interest in working with transition-age youth and young adults with autism spectrum disorder. However, further refinements may be helpful for enhancing scope and impact on practice.


2019 ◽  
Vol 24 (7) ◽  
pp. 444-451 ◽  
Author(s):  
Jessica A Brian ◽  
Lonnie Zwaigenbaum ◽  
Angie Ip

Abstract The rising prevalence of autism spectrum disorder (ASD) has created a need to expand ASD diagnostic capacity by community-based paediatricians and other primary care providers. Although evidence suggests that some children can be definitively diagnosed by 2 years of age, many are not diagnosed until 4 to 5 years of age. Most clinical guidelines recommend multidisciplinary team involvement in the ASD diagnostic process. Although a maximal wait time of 3 to 6 months has been recommended by three recent ASD guidelines, the time from referral to a team-based ASD diagnostic evaluation commonly takes more than a year in many Canadian communities. More paediatric health care providers should be trained to diagnose less complex cases of ASD. This statement provides community-based paediatric clinicians with recommendations, tools, and resources to perform or assist in the diagnostic evaluation of ASD. It also offers guidance on referral for a comprehensive needs assessment both for treatment and intervention planning, using a flexible, multilevel approach.


2019 ◽  
Vol 24 (7) ◽  
pp. 424-432 ◽  
Author(s):  
Lonnie Zwaigenbaum ◽  
Jessica A Brian ◽  
Angie Ip

Abstract Autism spectrum disorder (ASD) is a life-long neurodevelopmental disorder, characterized by impairments in social communication, repetitive, restricted patterns of behaviour, and unusual sensory sensitivities or interests. ASD significantly impacts the lives of children and their families. Currently, the estimated prevalence of ASD is 1 in 66 Canadians aged 5 to 17 years. General paediatricians, family physicians, and other health care professionals are, therefore, seeing more children with ASD in their practices. The timely diagnosis of ASD, and referral for intensive behavioural and educational interventions at the earliest age possible, may lead to better long-term outcomes by capitalizing on the brain’s neuroplasticity at younger ages. This statement provides clear, comprehensive, evidence-informed recommendations and tools to help community paediatricians and other primary care providers monitor for the earliest signs of ASD—an important step toward an accurate diagnosis and comprehensive needs assessment for intervention planning.


2018 ◽  
Vol 57 (13) ◽  
pp. 1496-1505 ◽  
Author(s):  
Jeffrey D. Shahidullah ◽  
Gazi Azad ◽  
Katherine R. Mezher ◽  
Maryellen Brunson McClain ◽  
Laura Lee McIntyre

Children with autism spectrum disorder (ASD) present with complex medical problems that are often exacerbated by a range of other intellectual and psychiatric comorbidities. These children receive care for their physical and mental health from a range of providers within numerous child-serving systems, including their primary care clinic, school, and the home and community. Given the longitudinal nature in which care is provided for this chronic disorder, it is particularly necessary for services and providers to coordinate their care to ensure optimal efficiency and effectiveness. There are 2 primary venues that serve as a “home” for coordination of service provision for children with ASD and their families—the “medical home” and the “educational home.” Unfortunately, these venues often function independently from the other. Furthermore, there are limited guidelines demonstrating methods through which pediatricians and other primary care providers (PCPs) can coordinate care with schools and school-based providers. The purpose of this article is 2-fold: (1) we highlight the provision of evidence-based care within the medical home and educational home and (2) we offer practice recommendations for PCPs in integrating these systems to optimally address the complex medical, intellectual, and psychiatric symptomology affected by autism.


2019 ◽  
pp. 195-207

Background: Autism spectrum disorder is characterized in part by atypical behavior in the communication, social, and visual domains. Success in vision therapy is judged not only by changes in optometric findings, but through improvement in quality of life involving communication, social behavior and visual behavior. It would therefore be beneficial to have a validated questionnaire to assess parent reported quality of life pre and post vision therapy specific to patients with autism spectrum disorder. To our knowledge, a questionnaire of this nature has not been previously published in the literature. Methods: Questionnaire items were generated through surveying medical literature based on symptoms in three different categories: visual behavior, social behavior and communication. A pool of 34 questions was developed initially and then with thorough discussion with other experts, a 20-point questionnaire was developed with each item reflected in the construct concept. A draft of 20 questions was then sent to 10 subject experts with clinical experience in the field for more than 20 years, to review the pooled items. Validity and reliability was established prior to assessing the psychometric properties of the ASD/QOL-VT. Prospective observational study was conducted for a duration of 18 months. The study included individuals undergoing vision therapy in the age range of 3 to 15 years who had been diagnosed with ASD. The questionnaire was administered to parents of these children prior to the start of vision therapy. All subjects completed a minimum of 60 vision therapy sessions. The questionnaire was readministered after completing 60 sessions of vision therapy. Results: Cronbach’s alpha value for this questionnaire was 0.93, which reflected very good internal consistency. Factorial analysis yielded four factors with an Eigen value exceeding 1.0 which accounted for 68% variation in the model. The Cronbach alpha value for subscales identified by factorial analysis is 0.97 indicating excellent internal reliability. The mean pre vision therapy social behavior, communication and visual behavior score was 12.0±3.21, 17.07±4.57 and 26.97±6.41 respectively. The mean post vision therapy scores for social behavior, communication and visual behavior was 8.27±4.16, 11.33±5.27 and 17.93±6.52 respectively. On paired t test, the mean difference in score was statistically significant with P<0.001 in all three subcategories. Conclusions: Our study presents the development of a valid and reliable parent questionnaire, the ASD/QOL-VT, that judges communication, social behavior, and visual behavior in autism. Results of the study conducted indicate that vision therapy can result in significant improvements in the quality of life of patients with ASD as judged by their parents. This is evidenced by statistically significant changes in psychometric properties of the ASD/QOL-VT in social behavior, communication and visual behavior.


Autism ◽  
2021 ◽  
pp. 136236132110240
Author(s):  
Jung-Chi Chang ◽  
Meng-Chuan Lai ◽  
Yueh-Ming Tai ◽  
Susan Shur-Fen Gau

Cross-sectional research has demonstrated the overrepresentation of gender dysphoria in children and adults with autism spectrum disorder. However, the predictors and underlying mechanisms of this co-occurrence remain unclear. This follow-up study aimed to explore baseline (childhood/adolescence) predictors for the follow-up (adulthood) self-reported wish to be of the opposite sex and to investigate its mental health correlates in a sample of 88 autistic individuals as compared with 42 typically developing controls. An item on the Adult Self-Report Inventory-4, “I wish I was the opposite sex,” was used. We compared mental health symptoms between adults with and without this item endorsement. We used prediction models to explore family and autism-related predictors in childhood/adolescence to endorse this item in adulthood. There were more adults endorsing the item in the autism spectrum disorder group compared with the typically developing group. Autistic adults who endorsed the item experienced more mental health challenges, more bullying victimization, more suicidal ideations, and worse quality of life. Lower parent-reported family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. It is necessary to raise more attention to gender development and related mental health impact in autistic individuals. Lay abstract Autistic people/people with autism spectrum disorder are more likely to experience gender dysphoria. However, the possible longitudinal predictors and underlying mechanisms of this co-occurrence are unclear. To fill this knowledge gap, we assessed 88 people with autism spectrum disorder and 42 typically developing individuals at their average ages of 13.0 (baseline, childhood/adolescence) and 20.2 years old (follow-up, adulthood). At follow-up, their endorsement on the item “I wish I was the opposite sex” was used to evaluate gender dysphoric symptoms. We compared mental health symptoms between adults with and without this item endorsement at the follow-up assessment. We explored parent-reported family and autism characteristics-related predictors in childhood/adolescence to this item endorsement in adulthood. We found that more autistic adults reported the wish to be of the opposite sex than did typically developing individuals. Autistic adults who endorsed this item experienced more mental health challenges, more school bullying and cyberbullying, more suicidal ideation, and worse quality of life. Moreover, parent-reported lower family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. More attention and support should be provided to autistic people regarding gender development and related mental health and quality of life impact, especially during the transition period to young adulthood.


2017 ◽  
Vol 3 (1) ◽  
pp. 3-14 ◽  
Author(s):  
David Murphy ◽  
Hannah Mullens

Purpose Although individuals with an autism spectrum disorder (ASD) represent a small proportion of forensic psychiatric patients as a group they present with specific difficulties and needs. There is also evidence that if detained individuals with an ASD experience particular difficulties within custodial environments as a result of a mismatch between the difficulties associated with their ASD and the environmental demands. The purpose of this paper is to explore the experience of individuals with an ASD admitted to a high secure psychiatric care (HSPC) hospital. Design/methodology/approach Using both a semi-structured interview and a quality of life self-report measure (the Lancashire Quality of Life Profile) the experiences and views of seven patients with an ASD detained in one HSPC hospital were qualitatively explored. Findings Whilst a diverse range of negative and positive aspects of being within HSPC were identified by patients interviewed, those with prison experience thought HSPC was a less stressful environment with more therapeutic opportunities. As a group, patients with an ASD reported a similar or significantly better quality of life in many domains (global, leisure, financial and living situation) compared to other detained forensic patient groups. Practical implications Although most patients with an ASD interviewed reported positive experiences, there are a number of practical improvements that could be made within the hospital to reduce experienced stress levels and perhaps improve therapeutic outcomes. Originality/value Within the context of the Department of Health's autism strategy (2010) and subsequent update think autism (2014), the survey highlights continued ASD awareness training for staff as important. In responding to the risks and needs of individuals with an ASD in HSPC there is further support for the development of an ASD specialist service.


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