Thursday, December 21, 2017

A Multi-Tiered Approach to Screening for Autism

A Multi-Tiered Approach to Screening for Autism

There has been a dramatic worldwide increase in reported cases of autism over the past decade. Yet, compared to population estimates, many students remain underidentified and underserved in our schools. It is not unusual for children with less severe symptoms of autism spectrum disorder (ASD) to go unidentified until well after entering school. As a result, it is critical that school-based educational support personnel (e.g., school psychologists, speech/language pathologists, special educators, counselors, and social workers) give greater priority to case finding and screening to ensure that children with ASD are identified and have access to the appropriate programs and services. 
   Screening and Identification

Until recently, there were few validated screening measures available to assist school professionals in the identification of students with the core ASD-related behaviors. However, our knowledge base is expanding rapidly and we now have reliable and valid tools to screen and evaluate children more efficiently and with greater accuracy. The following tools have demonstrated utility in screening for ASD in educational settings and can be used to determine which children are likely to require further assessment and/or who might benefit from additional support. All measures have sound psychometric properties, are appropriate for school-age children, and time efficient (10 to 20 minutes to complete). Training needs are minimal and require little or no professional instruction to complete. However, interpretation of results requires familiarity with ASD and experience in administering, scoring, and interpreting psychological tests.
The Autism Spectrum Rating Scales (ASRS; Goldstein & Naglieri, 2009) is a norm-referenced tool designed to effectively identify symptoms, behaviors, and associated features of ASD in children and adolescents from 2 to 18 years of age. The ASRS can be completed by teachers and/or parents and has both long and short forms. The Short form was developed for screening purposes and contains 15 items from the full-length form that have been shown to differentiate children diagnosed with ASD from children in the general population. High scores indicate that many behaviors associated with ASD have been observed and follow-up recommended.
The Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003), previously known as the Autism Screening Questionnaire (ASQ), is a parent/caregiver dimensional measure of ASD symptomatology appropriate for children of any chronological age older than four years. It is available in two forms, Lifetime and Current, each with 40 questions. Scores on the questionnaire provide a reasonable index of symptom severity in the reciprocal social interaction, communication, and restricted/repetitive behavior domains and indicate the likelihood that a child has an ASD. The lifetime version is recommended for screening purposes as it demonstrates the highest sensitivity value. 
The Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) is a brief quantitative measure of autistic behaviors in 4 to 18 year old children and youth. This 65-item rating scale was designed to be completed by an adult (teacher and/or parent) who is familiar with the child’s current behavior and developmental history. The SRS items measure the ASD symptoms in the domains of social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, and stereotypic behavior/restricted interests. The scale provides a Total Score that reflects the level of severity across the entire autism spectrum.
A Multi-Tiered Screening Strategy
The ASRS, SCQ, and SRS-2 can be used confidently as efficient first-level screening tools for identifying the presence of the more broadly defined and subtle symptoms of higher-functioning ASD in school settings. School-based professionals should consider the following multi-step strategy for identifying at-risk students who are in need of an in-depth assessment.
Tier  one. The initial step is case finding. This involves the ability to recognize the risk factors and/or warning signs of ASD. All school professionals should be engaged in case finding and be alert to those students who display atypical social and/or communication behaviors that might be associated with ASD. Parent and/or teacher reports of social impairment combined with communication and behavioral concerns constitute a “red flag” and indicate the need for screening. Students who are identified with risk factors during the case finding phase should be referred for formal screening.
Tier two. Scores on the ASRS, SCQ, and SRS-2 may be used as an indication of the approximate severity of ASD symptomatology for students who present with elevated developmental risk factors and/or warning signs of ASD. Screening results are shared with parents and school-based teams with a focus on intervention planning and ongoing observation. Scores can also be used for progress monitoring and to measure change over time. Students with a positive screen who continue to show minimal progress at this level are then considered for a more comprehensive assessment and intensive interventions as part of Tier 3.  However, as with all screening tools, there will be some false negatives (children with ASD who are not identified). Thus, children who screen negative, but who have a high level of risk and/or where parent and/or teacher concerns indicate developmental variations and behaviors consistent with an autism-related disorder should continue to be monitored, regardless of screening results.
Tier three. Students who meet the threshold criteria in step two may then referred for an in-depth assessment. Because the ASRS, SCQ, and SRS-2 are strongly related to well-established and researched gold standard measures and report high levels of sensitivity (ability to correctly identify cases in a population), the results from these screening measures can be used in combination with a comprehensive developmental assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to aid in determining eligibility for special education services and as a guide to intervention planning.
Limitations

Although the ASRS, SCQ, and SRS can be used confidently as efficient screening tools for identifying children across the broad autism spectrum, they are not without limitations. Some students who screen positive will not be identified with an ASD (false positive). On the other hand, some children who were not initially identified will go on to meet the diagnostic and/or classification criteria (false negative). Therefore, it is especially important to carefully monitor those students who screen negative to ensure access to intervention services if needed. Gathering information from family and school resources during screening will also facilitate identification of possible cases. Autism specific tools are not currently recommended for the universal screening of typical school-age children. Focusing on referred children with identified risk-factors and/or developmental delays will increase predictive values and result in more efficient identification efforts.

Concluding Comments
Compared with general population estimates, children with mild autistic traits appear to be an underidentified and underserved population in our schools. There are likely a substantial number of children with equivalent profiles to those with a clinical diagnosis of ASD who are not receiving services. Research indicates that outcomes for children on the autism spectrum can be significantly enhanced with the delivery of intensive intervention services. However, intervention services can only be implemented if students are identified. Screening is the initial step in this process. School professionals should be prepared to recognize the presence of risk factors and/or early warning signs of ASD, engage in case finding, and be familiar with screening tools in order to ensure children with ASD are being identified and provided with the appropriate programs and services. 

Best practice screening and assessment guidelines are available from: A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition). 

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism spectrum disorders. Dr. Wilkinson is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a best-selling text in the APA School Psychology Book Series,  Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Wednesday, December 20, 2017

Autism: Parent Acceptance and Empowerment


Patent Acceptance and Empowerment

Parents are often overwhelmed by the challenges presented by a child with autism. Research has shown that parents of children on the spectrum exhibit a characteristic stress profile which includes anxiety related to the child's uneven intellectual profiles, deficits in social relatedness, disruptive and maladaptive behaviors (internalizing and externalizing problems) and long-term care concerns. Among these stressors, the child’s maladaptive behavior profile is most reliably linked to parent stress. 

Studies indicate that raising children with autism is associated with higher levels of parenting stress and psychological distress than parenting typically developing children, children with a physical disability, or children with developmental delays without autism. Mothers, in particular, appear to face unique challenges related to the characteristics of autism. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with disabilities.
Research

Increased attention is now being given to the psychological well-being of parents of children and youth with autism. A number of studies have examined the factors that can influence the impact of children’s problem behavior on parent mental health. A study in the Journal Autism examined the relationships between child problem behavior, parent mental health problems, psychological acceptance (e.g., accepting and not being adversely influenced by negative emotions and thoughts that a parent may have about their child), and parent empowerment (e.g., actively attempting to change or eliminate potentially stressful events through the application of knowledge and skills).
The researchers found that the more positive parents’ psychological acceptance and empowerment, the less they reported severe mental health problems. Although greater parent empowerment was associated with fewer parent mental health problems, psychological acceptance had the greatest impact on parent mental health problems, after controlling for ASD symptomatology, negative life events, parent and child gender, and child age. 
Implications

This study has several important implications. The relatively chronic nature of behavior problems in children with autism may explain why acceptance is a more significant psychological construct for explaining parent mental health than is empowerment. If difficulties are manageable and support readily available, then an active, problem-focused coping style would be related to improved parent adjustment. However, for children with autism who exhibit more persistent behavior problems, or for highly stressed and frustrated parents, a problem-focused process may not be enough to ensure positive parent adjustment. If problems are less controllable and/or support less accessible, it may be impossible for parents to focus exclusively on trying to change or avoid their current experience. The authors comment, “In these situations, parents need a different coping strategy, one that allows them to acknowledge their current experience without trying to change it or avoid it.”  Therefore, it may be critically important to understand and evaluate the situation of the family, and offer parents both types of coping skills (acceptance and empowerment) for use across different situations.
This study supports the exploration of acceptance and mindfulness-based interventions as effective approaches for parents of children with autism and underscores the importance of considering the parent psychological experience when developing treatments for child problem behavior. The authors conclude, “Child-focused therapy should not focus exclusively on the child. At the same time that we provide parents with skills and supports to improve their children’s experience, we must also invest in helping parents to deal with their own emotions and coping strategies. 
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. DOI: 10.1177/1362361311422708
Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism spectrum disorders. Dr. Wilkinson is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a best-selling text in the APA School Psychology Book Series,  Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Tuesday, December 12, 2017

The Gender Gap in Autism: Where are the Girls?


The Gender Gap in Autism: Where are the Girls?

There has been a dramatic increase in reported cases of autism over the past decade. Prevalence rates have risen steadily, from one in 150, to one in 110, and now to one in every 59 children (or 16.8 per 1,000 8-year-olds). According to the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network, autism is 4 times more common among boys (1 in 37) than among girls (1 in 151). Statistics also indicate that referrals for evaluation of boys are nearly ten times higher than for girls. Moreover, girls are diagnosed with autism at later ages compared to boys. This gender “gap” raises serious questions because many female students with ASD are being overlooked and will not receive the appropriate educational supports and services. 
Why are fewer girls being identified?  Why do parents of girls experience a delay in receiving a diagnosis?  Are there gender differences in the expression of the disorder? Answers to these questions have practical implications in that gender specific variations may have a significant impact on identification practices and the provision of clinical and educational services. Although few studies have examined gender differences in the expression of autism spectrum disorders, we do have several tentative explanations for the underdiagnosis and late identification of girls with ASD. They include the following. 
  • Social communication and pragmatic deficits may not be readily apparent in girls because of a non-externalizing behavioral profile, passivity, and lack of initiative. Girls who have difficulty making sustained eye contact and appear socially withdrawn may also be perceived as “shy,” “naive,” or “sweet” rather than   having the social impairment associated with an autism spectrum disorder.
  • The diagnosis of another disorder often diverts attention from autism-related symptomatology. In many cases, girls tend to receive unspecified diagnoses such as a learning disability, processing problem, or internalizing disorder. A recent survey of women with Asperger syndrome indicated that most received a diagnosis of anxiety or mood disorder prior being identified with an autism spectrum disorder.
  • The perseverative and circumscribed interests of girls with autism spectrum disorders may appear to be age-typical. Girls who are not successful in social relationships and developing friendships might create imaginary friends and elaborate doll play that superficially resembles the neurotypical girl.
  • Although Students with ASD are more likely to be the target of bullying than typical peers, this may not be recognized in girls due to gender differences in preferred modes of aggression. For example, girls may use covert verbal, social, and psychological forms of aggression while boys tend to rely on confrontational and direct modes of bullying. As a result, the more subtle nature of relational and indirect aggression (social exclusion and rejection) used by girls may be taken less seriously than the more obvious, direct aggression exhibited by boys.
  • Although girls may appear less symptomatic than boys, the genders do share similar profiles. Research suggests that when IQ is controlled, the main gender difference is a higher frequency of idiosyncratic and unusual visual interests and lower levels of appropriate play in males compared to females. As a result, the behavior and educational needs of boys are much more difficult to ignore and are frequently seen by teachers and parents as being more urgent, further contributing to a referral bias.
  • Over reliance on the male model with regard to diagnostic criteria might contribute to a gender “bias” and underdiagnosis of girls. Clinical instruments also tend to exclude symptoms and behaviors that may be more typical of females with ASD. For example, assessment instruments such as the Autism Spectrum Rating Scales (ASRS) and Social Responsiveness Scale (SRS) have generally reported higher mean scores for boys than girls. The lower symptom scores for girls may reflect gender differences and expression of the phenotype. Recent research suggests that certain single test items may be more typical of girls than of boys with ASD, and examining symptom gender differences at the individual level might lead to a better understanding of the gender difference in ASD.
  • Apart from biases in reporting or diagnosis, there is significant evidence to suggest that multiple biological factors contribute to the sex differences seen in autism. These include genetic and hormonal differences between males and females that may provide a “protective” mechanism for girls and lead to differences in symptoms and vulnerability to the disorder.
If girls do process language and social information differently than boys, then clinical and educational interventions based largely on research with boys may be inappropriate. As a result, girls may receive less than optimal academic and behavioral interventions. If gender specific variations do exist, then the predictive validity of the diagnosis and developmental course may well differ between the sexes. Unfortunately, the consequences of a missed or late diagnosis can result in social isolation, peer rejection, lowered grades, and a greater risk for mental health and behavioral distress such as anxiety and depression during adolescence and adulthood. As a result, there is an urgent need for research to compare girls with ASD to typical boys and girls to more fully comprehend the implications of being a girl on the autism spectrum. 

Best practice recommends that when a girl presents with a combination of social immaturity, restricted interests, limited eye gaze, repetitive behaviors, social isolation, and is viewed as “unusual” or “different” by parents, teachers and peers, the possibility of an ASD should be given consideration. Clinicians and school-based professionals might also question the presence of ASD in girls referred for internalizing disorders such as anxiety or depression. 

Best practice assessment and intervention guidelines are available from: A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition.) and Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. 
Adapted from Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2nd Edition.). London and Philadelphia: Jessica Kingsley Publishers.

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, chartered psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is also a university educator and trainer, and has published widely on the topic of autism spectrum disorders both in the US and internationally. Dr. Wilkinson is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

Friday, November 17, 2017

Best Book Awards - A Best Practice Guide to Assessment & Intervention for Autism Spectrum Disorder in Schools


A Best Practice Guide to Assessment & Intervention for Autism Spectrum Disorder in Schools (2nd Edition) was selected as an Award-Winning Finalist in the "Education/Academic" category of the 2017 Best Book AwardsFully updated to reflect current assessment tools, procedures and research, this award-winning book provides a practical and scientifically-based approach to identifying, assessing, and treating children and adolescents with an Autism Spectrum Disorder (ASD) in school settings. Integrating current research evidence with theory and best practice, each chapter features a consolidated and integrative description of best practice assessment and intervention approaches for children and youth with ASD. It brings the topics of assessment and intervention together in a single authoritative resource guide consistent with recent advances in evidence-based practice.  Illustrative case examples, glossary of terms, and helpful checklists and forms make this the definitive resource for identifying and implementing interventions for school-age children and youth with ASD.

This Guide is intended to meet the needs of school-based professionals such as school psychologists, counselors, speech/language pathologists, occupational therapists, counselors, social workers, administrators, and both general and special education teachers. Parents, advocates, and community-based professionals will also find this guide a valuable and informative resource.

                                          
Editorial Reviews  

“It is rare that one book can pack so many resources and easy to digest information into a single volume!  Families, school personnel, and professionals all need the extensive, and up-to-date tips, guides, and ‘must-knows’ provided here. It’s obvious the author is both a seasoned researcher and practitioner – a winning combination.” — Dr. Debra Moore, psychologist and co-author with Dr. Temple Grandin, of The Loving Push: How Parents & Professionals Can Help Spectrum Kids Become Successful Adult 

“Dr Wilkinson has done it again. This updated and scholarly Second Edition reflects important recent changes regarding diagnosis and services for students with Autism Spectrum Disorder. With its numerous best-practice suggestions, it is a must-read for school psychologists, school social workers, and those who teach in general and special education.” — Dr Steven Landau, Professor of School Psychology in the Department of Psychology, Illinois State University 

“This book is an essential resource for every educator that works with students with ASD! The easy-to-read format is complete with up to date research on evidence-based practices for this population, sample observation and assessment worksheets and case studies that allow the reader to apply the information presented.” — Gena P. Barnhill, PhD, NCSP, BCBA-D, LBA, Director of Special Education Programs at Lynchburg College, Lynchburg, VA  

Availability

A Best practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition) is available from Jessica Kingsley PublishersAmazon.comBarnes & NobleBooks-A-MillionBook DepositoryTarget.com,Walmart.comand other booksellers. The book is available in both print and eBook formats.
Author
Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He provides consultation services and best practice guidance to school systems, agencies, advocacy groups, and professionals on a wide variety of topics related to children and youth with autism spectrum disorder. He is also a university educator and school psychology trainer. His research and professional writing has focused primarily on behavioral consultation and therapy, and evidence-based practice in assessment and intervention for autism spectrum disorder. He has published numerous journal articles on these subjects both in the US and internationally. Dr. Wilkinson is author of the award-winning book,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and editor of a best-selling text in the APA School Psychology Book Series,  Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in SchoolsHis previous book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT, was honored as an “Award-Winning Finalist in the “Psychology/Mental Health” category of the 2016 Best Book Awards.”

Wednesday, November 1, 2017

Sensory Sensitivity in Adults on the Autism Spectrum

Sensory Sensitivity in Autistic Adults

Anecdotal reports and empirical evidence suggest that atypical or unusual sensory responses are a common feature of autism spectrum conditions. Sensory issues are now included in the DSM-5 symptom criteria for restricted, repetitive patterns of behavior, interests, or activities (RRB). This includes hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment; such as apparent indifference to pain/heat/cold and adverse response to specific sounds or textures.  For example, one of the most commonly reported challenges for individuals with autism spectrum conditions is hypersensitivity to noise. Many adults report sound sensitivity problems such as hyperacusis, Misophonia, and phobias related to specific sounds. When present, sensory problems can interfere with adaptability in many areas of life (communication, daily living, socialization, occupational). Understanding sensory issues in adults on the autism spectrum is critical to the identification and prescription of appropriate interventions especially considering studies that suggest a link between anxiety and sensory over-responsivity which can further compromise an individual's ability to function successfully in daily life.

A study published in Autism investigated sensory over-responsivity in adults compared to control participants and the extent to which daily life experiences were endorsed as uncomfortable or distressing by those on the spectrum. The researcher’s hypothesized that adults with autism would report more sensory over-responsivity than controls. A second objective was to test whether sensory over-responsivity is linked to autistic traits in adults with and without autism.
Adults with (n = 221) and without (n = 181) autism spectrum conditions participated in an online survey. The Autism Spectrum Quotient (AQ), the Raven Progressive Matrices and the Sensory Processing Scale were used to characterize the sample. Adults with autism spectrum conditions reported more sensory over-responsivity than control participants across all sensory modalities (vision, hearing, touch, smell, taste and proprioceptive). These findings highlight the importance of measuring each sensory domain separately rather than combining scores from various sensory domains. Notable in this study was the association between sensory over-responsivity and autistic traits. Increased sensory sensitivity was associated with more self-reported autistic traits, both across and within groups. These results indicate that adults on the autism spectrum experience sensory over-responsivity to daily sensory stimuli to a high degree and that a positive relationship exists between sensory over-responsivity and autistic traits.
Despite its limitations, this study shows that adults on the spectrum self-report over-responsivity across multiple sensory domains (vision, hearing, touch, smell, taste and proprioceptive) that affect their daily life routines and thus quality of life. Although sensory symptoms improve with maturation for typical individuals, sensory features in ASD remain stable and may become more challenging during adulthood. Likewise, sensory over-responsivity has also been linked to higher rates of depression and anxiety. Evaluating and attending to over-responsivity have implications for understanding and addressing the sensory components of their daily life routines and roles. Appropriate intervention should be directed towards sensory issues that may be contributing to emotional and psychological challenges and towards designing sensory friendly domestic and work environments.
Tavassoli T., Miller, L. J., Schoen, S. A., Nielsen, D. M., & Baron-Cohen, S. (2014). Sensory over-responsivity in adults with autism spectrum conditions. Autism, 18, 428–432.  
doi: 10.1177/1362361313477246

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also the editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHis latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd edition).

Monday, October 16, 2017

FOUR "MUST HAVE" AUTISM SPECTRUM BOOKS



         http://amzn.to/2jcegH0  -  A Best Practice Guide to Assessment and
          Intervention for Autism Spectrum Disorder in Schools (2nd Edition)

         http://amzn.to/2gt7U7g  -  A Best Practice Guide to Assessment and 
          Intervention for Autism and Asperger Syndrome in Schools (1st Edition)

          http://amzn.to/2x4sXRr  -  Autism Spectrum Disorder in Children and   
          Adolescents: Evidence-Based Assessment and Intervention

          http://amzn.to/1Eeh85i  -  Overcoming Anxiety and Depression on the  
          Autism Spectrum: A Self-Help Guide Using CBT

                      Please visit: http://amazon.com/author/lee_a_wilkinson

         

Sunday, October 1, 2017

The Crisis in Mental Health Services for Young Adults on the Autism Spectrum


The Crisis in Mental Health Services

The dramatic increase in the prevalence of autism spectrum conditions among children over the past decade indicates that a correspondingly large number of youth will be transitioning to adulthood in the coming years. It is estimated that more than 50,000 adolescents with autism will turn 18 years old this year in the U.S. As these numbers continue to rise, there is an urgent need to address the mental health issues faced by many adults on the autism spectrum.
Although we know that children with autism grow up to be adults with autism, there are fewer mental health services available for adults on the spectrum, particularly for individuals who are not intellectually challenged. A review in the open access journal, Autism Research and Treatment, highlights the service needs and the corresponding gaps in care for this population. The authors posit that the mental health system is in crisis and that although the rates of mental health issues for adults on the spectrum is high, accessing services to address these symptoms remains difficult. Poor recognition tends to occur for a number of different reasons, including restrictive intake criteria, misdiagnosis, limited knowledge or awareness of autism spectrum conditions, clinicians who lack confidence or experience in caring for this group of adults, and the belief that other service providers will provide this care. Consequently, many adolescents and adults on the autism spectrum, because of their diagnosis, are excluded from community mental health services, leaving them grossly underserved.
Mental Health Issues
Comorbid (co-occurring) psychiatric disorders are well documented in individuals with autism across the lifespan. Research suggests that a very high proportion of adults and teens on the spectrum present with co-occurring (comorbid) psychiatric conditions, particularly depression and anxiety. For example, recent studies examining psychiatric comorbidity in young adults with autism spectrum conditions found that 70% had experienced at least one episode of major depression, 50% had suffered from recurrent depressive episodes, and 50% met criteria for an anxiety disorder. Unfortunately, it appears that co-occurring psychiatric disorders and even the diagnosis of an autism spectrum condition itself often go unrecognized among more capable adolescents and adults on the spectrum seeking psychological or psychiatric care. Many youth and young adults report significant difficulties accessing healthcare services, particularly comprehensive health services. Part of the reason for this difficulty may stem from service providers feeling ill equipped to work with individuals with autism, particularly individuals with co-occurring mental health issues. As a result, adolescents and adults with autism spectrum conditions have access to significantly fewer programs than adolescents and adults with other types of developmental disabilities. Not surprisingly then, a consistent theme for parents of individuals with autism is the fear that their child will fall through the cracks when transitioning from child to adult services. Similar concerns have been voiced by the individuals on the spectrum themselves, who describe how their needs are infrequently recognized and the programs and services available are not designed for people with autism spectrum conditions in mind.
Conclusions
Adolescents and adults on the autism spectrum represent a complex and underserved population. Of the studies completed to date, findings suggest that this group of adolescents and adults faces a multitude of psychiatric and psychosocial issues, alongside significant challenges in accessing services. Social skills deficits for individuals on the spectrum persist into adulthood, and adults appear to be at an increased risk for developing depression and anxiety. Despite this, very few studies have examined treatment approaches and interventions (pharmacological and psychosocial) for adolescents and adults with autism spectrum conditions. While evidence is beginning to emerge for interventions targeting this population, including cognitive-behavioral therapy (CBT), mindfulness-based therapy (MBT), and social skills training (SST), further large-scale studies which compare the effectiveness of, for example, CBT or MBT versus other treatment options (e.g., medication, counseling, etc.) are required. Likewise, there is an immediate need for mental health clinicians who are trained to apply these techniques. In developing interventions, programs must also consider what adolescents and adults want. For example, adolescents and adults on the spectrum may be more interested in interventions which focus on vocational opportunities than interventions targeting social skills. Moreover, both individuals and their family must be viewed as valuable contributors and fully involved in this process. Lastly, researchers must look at issues of service cost and efficiency when evaluating the impact of interventions.
Recommendations
1. According to the U.S. Surgeon General, over the course of a year, approximately 20% of children and adolescents in the U.S. experience signs and symptoms of a mental health problem. Unfortunately, most children and youth who are in need of mental health services do not actually receive them. Psychological services should be expanded in schools to include a major focus on the delivery of mental health services to all students. 
2. Developmental disability agencies or agencies supporting individuals with autism spectrum conditions must partner with community mental health agencies to help train, mentor, and build capacity to care for this group across the lifespan. It is important to note that many clinicians working within community mental health agencies already have the skills to effectively deliver this care, but programs either preclude their ability to do so or they lack the confidence to work with this population.
2. There is a critical need for community mental health agencies to review their exclusion criteria to include persons with autism spectrum conditions. For example, agencies providing care for persons with mood or anxiety disorders should not exclude individuals on the basis of a diagnosis of autism. Community mental health agencies have the resources and expertise in mental health, along with the programs to deliver services for individuals with mental health issues (e.g., vocational programs, counseling, and therapies), but will need guidance from developmental disability agencies to successfully adapt these programs for adults on the autism spectrum.
3. Developmental disability agencies must reevaluate their inclusion criteria to include persons with autism spectrum conditions, regardless of IQ, and across the lifespan. Organizations must work together, combining expertise in autism from developmental disability agencies with knowledge and resources from community mental health agencies.
4. There is a need to study and identify programs and supports that are most effective in both school and community settings. This will require a full continuum of mental health services including counseling, vocational training, supported employment, inpatient services, and outpatient services. It will also require a network of experienced clinicians and community partners. Many of these efforts are already underway in pediatric settings; however, these same efforts are required in adolescent and adult mental health services.
5. Finally, there is a need to prepare and equip older youth with autism spectrum conditions for the transition to adult services.
Johanna K. Lake, J. K., Perry, A., & Lunsky, Y. (2014). Mental Health Services for Individuals with High Functioning Autism Spectrum Disorder. Autism Research and Treatment, Volume 2014, Article ID 502420. http://dx.doi.org/10.1155/2014/502420
Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBTHe is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in SchoolsHis latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

Thursday, September 14, 2017

Mothers of Children with Autism Experience High Levels of Stress and Fatigue

Mothers of Children with Autism Experience High Levels of Stress & Fatigue

Studies indicate that the demands placed on parents caring for a child with autism contribute to a higher overall incidence of parental stress, depression, and anxiety and adversely affect family functioning and marital relationships compared with parents of children with other disabilities. Negative outcomes include: (a) increased risk of marital problems; (b) decrease in father’s involvement; (c) greater parenting and psychological distress; (d) higher levels of anxiety and depression; (f) added pressure on the family system; (g) more physical and health related issues; (h) decrease in adaptive coping skills; and (i) greater stress on mothers than fathers.

Mothers, in particular, may experience high levels of psychological distress, depressive symptoms, and social isolation. For example, research has found that nearly 40% of mothers reported clinically significant levels of parenting stress and between 33% and 59% experienced significant depressive symptoms following their child’s diagnosis of ASD. Challenges in obtaining a timely ASD diagnosis and lack of appropriate treatment services and education were contributors to parental stress and dissatisfaction. Likewise, research examining maternal stress, coping strategies, and support needs among mothers of children with ASD found that the most frequently reported important unmet needs were (1) financial support; (2) break from responsibilities; (3) rest/sleep; and (4) help remaining hopeful about the future. Parents of children with ASD are at particular risk of sleep disruption and poor sleep quality owing to the high rate of sleep problems in their children.

There is also evidence to suggest that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue associated with poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was significantly related to other aspects of well-being, including stress, anxiety and depression, and lower parenting efficacy and satisfaction. Symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to or exacerbate fatigue.

Implications

Research and anecdotal reports clearly indicate the need for interventions to specifically target parental stress and fatigue and its impact on families affected by ASD both in the present and longer term. Understanding parent perspectives and targeting parental stress is critical in enhancing well-being and the parent-child relationship. When families receive a diagnosis of autism, a period of anxiety, insecurity, and confusion often follow. Some autism specialists have suggested that parents go through stages of grief and mourning similar to the stages experienced with a loss of a loved one (e.g., fear, denial, anger, bargaining/guilt, depression and acceptance). Sensitivity to this process can help professionals provide support to families during the critical period following the child’s autism diagnosis when parents are learning to cope with feelings and navigate the complex system of autism services.
In addition to interventions targeting child-related problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on well-being, parenting and caregiving. This includes information about strategies to minimize and/or cope with the effects of sleep disruption, increase health and self-care behaviors, and strengthen opportunities for social support. An assessment of the presence and severity of the physical, cognitive and emotional symptoms of fatigue, as well as the perceived impact on daily functioning, mood, relationships, parenting and other aspects of caregiving is also an important practice consideration. Future work should involve the development and evaluation of information resources and intervention approaches to assist parents of children with an ASD to manage fatigue and promote their overall well-being. The longer-term benefits for parents in terms of strengthening their general health, welfare and parenting should also be a focus of research. Lastly, research is needed to develop an understanding of the experience of fathers in parenting a child on the autism spectrum.
                                                       Key References & Further Reading
Abidin, R. R. (2012). Parenting Stress Index (4th ed.). Lutz, FL: PAR.
Barnhill, G. P. (2014). Collaboration between families and schools. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 219-241). Washington, DC: American Psychological Association.

Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375-387.

Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N…Silverstein, M. (2014). Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40-46. doi:10.1001/jamapediatrics.2013.3445.

Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480. DOI: 10.1177/1362361311416830

Kiami, S. R., Goodgold, S. (2017). Support Needs and Coping Strategies as
Predictors of Stress Level among Mothers of Children with Autism Spectrum Disorder. Autism Research and Treatment Volume 2017, Article ID 8685950, https://doi.org/10.1155/2017/8685950

Lee, G. K. (2009). Parents of children with high functioning autism: How well do they cope and adjust? Journal of Developmental and Physical Disabilities, 21, 93-114. doi:
10.1007/s10882-008-9128-2

National Autism Center. (2015). Evidence-based practice and autism in the schools: An educator’s guide to providing appropriate interventions to students with autism spectrum disorder (2nd ed.). Randolph, MA: Author

Pottie, C. G., & Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children
with autism: A multilevel modeling approach. Journal of Family Psychology, 22, 855-
864. doi: 10.1037/a0013604

Wagner, S. (2014). Continuum of services and individualized education plan process. In L. A.
Wilkinson (Ed.). Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 173-193). Washington, DC: American Psychological Association.

Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. doi: 10.1177/1362361311422708

Pottie, C. G., & Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children
with autism: A multilevel modeling approach. Journal of Family Psychology, 22, 855-
864. doi: 10.1037/a0013604

Wilkinson, L.A. (2016). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2nd edition). London and Philadelphia: Jessica Kingsley Publishers. 

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools, His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).


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