Fragmented transition pathway for ID, ASD and Mental Health

Dr Lionel Lubitz

Introduction

One in three people with mild to moderate Intellectual Disability (ID) and/or Autism Spectrum Disorder (ASD) has a mental illness. Approximately 80% of these young people are high users of health care resources. However there are often no established transfer pathways to adult services, and transition is often difficult and disjointed particularly for people with severe ID or ASD with behavioural concerns.

Objectives

This study was designed to understand the needs and knowledge of practitioners involved in transition of patients with ID and/or ASD with mental health (MH) comorbidities from the Royal Children’s Hospital (RCH) Melbourne, Australia to adult services and introducing a holistic model of care.

Methods

An interview using standard question prompts to explore child health practitioners’ experience and understanding of transition, was completed internally with 27 medical professionals involved in the care of this group of patients. External interviews are planned for early 2017 with primary care, disability services, psychiatrists and community services.

Results

All practitioners recognised major deficits in our large tertiary hospital’s transition process for this patient group and the majority (76%) reported the transfer process was not well done. There was no consistent view on the right age for transition to commence, with suggested age ranging from as soon as there is a diagnosis (9%), to 14 (30%), 15-16 (38%) and 17 (23%) years of age. The role of primary care was seen as important by 73% and yet 65% recognised significant deficiencies in this area.

Problems identified by a substantial proportion of respondents including:

(1) difficulty finding skilled and/or interested adult practitioners as the major challenge (65%)
(2) fragmented adult care and a lack of shared care between tertiary and primary health care (46%)
(3) lack of case management (40%)
(4) family anxiety about transition (35%)
(5) cost of care, medication and limited time available from adult services (30%).

Conclusion

The transition of patients with ID and or ASD with MH comorbidities is challenging, and perceived to be done poorly by doctors at a major tertiary paediatric hospital in Australia. The importance of a well-developed transition process was recognised by most respondents. This presentation will also suggest mechanisms to improve transition for these individuals.

Manualized treatments for children and adolescents with ASD match the requirements for structured and easily applicable programs in basic health care systems. The manual of the Social Skills Group Training for Adolescents with ASD (KOMPASS) (Jenny et al., 2012) has been developed at the Autism Clinic at the Department for Child and Adolescent Psychiatry, University of Zurich. In the beginner’s group (KOMPASS-Basics) understanding emotions, small-talk and nonverbal communication as well as social understanding and perspective taking are conveyed. In the advanced group (KOMPASS-F) complex interactions, complex communications and theory of mind are practiced. We previously evaluated the beginner’s training and showed a reduction in ASD symptoms. Here we introduce and evaluate the KOMPASS advanced training (KOMPASS-F) together with an extended re-evaluation of the KOMPASS-Basics. In both trainings, two instructors work with 7-10 participants for 25-30 sessions and 3 information-sessions for caregivers. KOMPASS makes use of the cognitive profile typically observed in ASD, e.g. local processing, systemizing and task orientation. Therapeutic procedures include structuring, visualizing, explicit learning of implicit social rules provided on information sheets, step-by-step learning and concretizing abstract concepts.
Our re-evaluation of KOMPASS-Basics compares reduction in autistic symptom and mental health scores obtained via questionnaires rated by parents and teachers for an intervention group (ni=110) and a waiting control group (nc=56) before (pre) and after (post) 7-8 months. Follow-up data (nf=94) is collected 12 months later in the intervention group. Additionally, we investigate if patients (ne=35) from the KOMPASS-Basic-groups in other clinics show similar improvements compared to Zurich. Similarly, for the KOMPASS-F group, questionnaires were acquired at the same three timepoints (ni=53, nc=50, nf=40). Data was analysed with linear mixed-models.
For the KOMPASS-Basics group, post-hoc t-tests revealed significant declines in autistic symptoms and increase in social skills with moderate to high effect sizes. Similar effects were found in the external institutions. The waiting group showed no effects. Remarkably, KOMPASS-F training led to additional improvements over and above the social skills acquired during KOMPASS-Basics training.
In conclusion KOMPASS helps adolescents and young adults to cope better with social aspects of everyday life.

Objectives: Since the launch of the Autism Spectrum Disorder (ASD) guidelines in New Zealand in 2008, and the subsequent introduction of locality-based ASD coordinators, district health boards around the country have attempted to improve services for children and adolescents with ASD. However, the extent to which things have actually changed over the past decade remains unknown. This study sought to compare current service provision for children and adolescents and to investigate differences between the assessment and intervention phases of management in relation to national recommendations.

Methods: A nation-wide survey of practitioners working with children and adolescents with ASD was undertaken in 2016 to identify the types of services being provided and to compare current practice with that recommended by the ASD guidelines.

Results: Responses were received from practitioners in 17 out of 20 district health boards. The majority of respondents were aware of the guidelines and the presence of ASD coordinators within their organisations. Significant differences were identified between assessment of children in paediatric settings and adolescents in mental health settings. Intervention services were found to be even more variable in nature and limited in relation to recommended standards.

Conclusions: Despite the improvement in some aspects of care, further work remains to be done to reduce the variability and fragmented nature of services for for children and adolescents with ASD in New Zealand. The principles learnt from our country are likely to be relevant to service providers and planners in other countries.

Early start Denver Model (ESDM) is a developmental and behavioral model of intervention for toddlers with Autism Spectrum disorder (ASD). Previous study has shown efficacy of a 20 hours per week therapist-delivered ESDM intervention on the cognitive level of children with ASD, over a 2 year period. At the beginning, two early intervention units applying the ESDM 12 hours per week were created in France. It was essential to evaluate impact of 12 hours per week ESDM intervention with 1 therapist for 1 child on the cognitive level of children with ASD.

A prospective before-and-after trial included 19 toddlers with ASD. We showed significant improvements in all cognitive and language skills at the Mullen Scale of Early Learning (MSEL). After only 9 months, major improvements were shown in receptive Language. Moreover, we will discuss that our outcomes were similar, with a smaller intensity (12 hours versus 20 hours per week), to the study of Dawson et al. (2010).

ESDM applied 12 hours per week, by a multidisciplinary team and in collaboration with parents, may be an efficient intervention to improve cognitive and language skills of children with ASD. We will next run a multicenter randomised control trial ESDM 12 hours per week over 2 years-period.

Objectives Research is increasingly documenting the importance of children’s problem behaviors and symptom severity for parenting behaviors in parents of children with ASD. The underlying mechanisms of these child-effects, however, have not been examined thoroughly. This study examines the mediating role of parental need frustration in the relation between child maladjustment (i.e., problem behavior and autism severity) and parenting behavior (i.e., controlling parenting and autonomy support). Based on Self-Determination Theory (Deci & Ryan, 2000), we hypothesized that child maladjustment would relate to the frustration of parents’ needs for autonomy, competence, and relatedness, and via this, to controlling parenting and low autonomy support.

Methods Data were drawn from the 3rd wave of a long-term longitudinal study (Dieleman et al., in press). The sample included 116 parents, mainly mothers, of adolescents/emerging adults with ASD (Mage = 18.9). Parents completed questionnaires concerning the their parenting strategies (i.e., psychological control, over-reactive discipline, and autonomy support), their psychological need frustration, the behavioral problems, and autism severity of their child.

Results The mediation model indicated that symptom severity had a direct association with lower autonomy support (β= -.33; p < .01). Externalizing problems were associated with parental need frustration (β = .56; p < .05), which was, in turn, related with controlling parenting (β = .82; p < .001). The significant indirect association (β= .46; p < .001) indicated that the effect of externalizing problems is fully mediated by need frustration. Internalizing problems were not associated with parenting behaviors.

Conclusions Externalizing problems impede parents’ connection with their child, their parental competence and their sense of volitional functioning, feelings to which they respond by increasing controlling strategies. The direct effect of autism severity suggests that parents respond directly to their child’s autism symptoms by lowering their autonomy support, without experiencing these symptoms as a threat to their psychological needs. In addition to yielding more insight in associations between child maladjustment and parenting, these findings have practical implications. Interventions targeting adolescents and parents in this challenging developmental period could focus not only on parenting behavior but also on parents’ experiences of need frustration.

The system of psychological assistance to children with autism in Russia has changed significantly and rapidly developing in a positive vector in our day. Institutions of medical and educational profiles in their professional activities carry out rehabilitation work: medical, psychological, educational. The General trend of the increasing number of children with autism in special schools is clearly evident in the framework of one institution, where the percentage of this category of children in recent years is 15% of the total number of students in the school, among the new entrants is 30%. Teachers and psychologists work with the child regardless of what form he is educated in what type of educational organization (general, special, inclusive). However, this problem is often decisive for the content and quality of psychological assistance to children with autism. Not every type of school has qualified professionals who know the needs of the child, not everywhere there are conditions for integrated support, including psychological-pedagogical and medico-social rehabilitation component. In special school there are conditions for a comprehensive support of a child includes special program, focused on the educational needs and educational opportunities of the autistic child; compliance with gentle conditions prevents fatigue.
Effectiveness of rehabilitation largely determined the professionalism of the support of the child. Problem the professional competence of psychologists depends on the system of University education that does not offer special programs on formation of knowledge of the specifics of dysontogenesis, diagnostic tools, effective rehabilitation practices. Cooperation of universities and institutions (in Russia and abroad), which have successfully and systematically solve problems of medical-psychological-pedagogical rehabilitation of children with autism, conducting on their basis training of students, could qualitatively to enhance professional competence by minimizing problems "entering into profession" of young professionals.
Today, we have methodical and technological capabilities. We understanding - effective psychological help it is possible to provide, when it is part of a comprehensive rehabilitation, is implemented in specialized institutions with qualified specialists with a wide professional horizon.