Supporting children with developmental disabilities in the community - Enhancing Public Awareness

Increasing prevalence of developmental disabilities

Developmental disabilities in children include physical, learning, communication, emotional and behavioural disorders. The increasing numbers of children with developmental disabilities warrant the support from the whole community. A recent national survey conducted in the United States indicated the prevalence of developmental disabilities has increased from 12.84% to 15.04% over 12 years (1). It is suggested that the improvement in clinical, parental, and societal recognition may be the possible factors (1).

In Hong Kong, the Child Assessment Service (CAS) of the Department of Health also reported an increase in the number of referrals on developmental disabilities. Similar with the international condition, it could be due to increased public awareness and knowledge on this topic.

Extent of public awareness of developmental disabilities in Hong Kong

Estimated from the Thematic Household Survey Report (THSR) Report No. 34: Public Awareness and Attitudes towards Developmental Disabilities in Children (2008) (2) from the Census and Statistics Department, about 95% of the respondents aged 18 or over had heard of some / all types of childhood developmental disability. Awareness was the highest for autistic spectrum disorder (ASD) and mental retardation, about 90%.  About 70% knew that children with ASD were weak in socialization and communication. Further, 74% knew that lacking of parent-child interaction through play was not a cause for ASD and about 85% thought that lacking of parental discipline was not the major cause of Attention Deficit Hyperactivity Disorder (AD/HD).
Although the results suggested there was some general understanding of developmental disability among the public, possibility in misconceptions were also revealed. To support our children with developmental disability in the realm of the whole community, professionals such as kindergarten teachers, health care professionals and social workers should be aware of the possible misconceptions. On the other hand, having accurate knowledge on developmental disability and taking an appropriate intergrated perspective are indispensable for all related professionals within their own specialties.

Misconceptions about some developmental disabilities identified in THSR:

  1. Appearance of children with mental retardation is different from that of ordinary children at similar age

    There was only about 24% of respondents aged 18 or over knew that the appearance of children with mental retardation was not different from that of ordinary children at similar age. Mental retardation is currently termed as intellectual disability. It should be realized as the impairment not only manifests in intellectual aspects but also in areas of social adaptive development, as well as conceptual, social and practical adaptive skills. Such impairment cannot be identified solely by the child’s appearance.

    It is important that parents / teachers should have knowledge concerning what areas of development to be observed and the appropriate timing for seeking professional advice. For pre-school children, one should be vigilant if two or more developmental domains such as cognitive, language, motor, social and emotional are significantly behind the general standard for a period of time.

  2. Features of Attention Deficit Hyperactivity Disorder (AD/HD) would disappear when one grows up

    About 40% of respondents aged 18 or over believed that the features of AD/HD would disappear when one grew up. They perceived that people with AD/HD generally lacked desire to attend ordinary class and were unable to sit properly in class because they were gifted children. The former belief may be related to the phenomenon of behavioural changes, particularly in the domain of hyperactivity, at different age level. Starting from adolescence, the core features of AD/HD may manifest and emerge as other behaviours such as dangerous driving, drug abuse, casual dating and sexual relationship (3). Besides, the core features of AD/HD may also result in inconsistent performance which may easily be misbelieved as lacking of motivation or desire to learn. The presence of other comorbid conditions such as dyslexia may also account for the low motivation among these children. Moreover, people would also consider giftedness as another reason that caused children lacking the desire to attend ordinary class. This is an important myth that needs to be clarified. In fact, the distribution of intellectual functioning of children with AD/HD is just like normal children as shown by Child Assessment Service (CAS) data. It is estimated that only about 1.9% of the children diagnosed with AD/HD were found to have very superior intelligence.

    The behavioural manifestation of certain developmental disability such as AD/HD may vary with age and be complicated by comorbid conditions. It is common for children to present with behavioural problems such as hyperactive and impulsive behaviours at pre-school years. They, however, may or may not be AD/HD. It is not until they have reached school age, they should not be given the diagnosis of AD/HD. Thus, professionals have to be familiar with the evolving course of certain developmental disabilities.
    Besides the CAS website of the Department of Health, related professionals can also visit the website of American Psychological Association for an update of AD/HD, and the“Website for Children and Adults with Attention-Deficit/Hyperactivity Disorder”for more information about coexisting conditions of AD/HD.

  3. Children with Autistic Spectrum Disorder (ASD) were unsociable and preferred being alone

    About 40% of respondents aged 18 or over believed that children with ASD were unsociable and preferred being alone. In fact, the presentation of ASD is very unique and yet varies (3). Most of the ASD kids with normal intelligence are actually having much social intent and prefer not being alone. The social and communication performance is not just being aloof. They can be passive but responsive (4). They can even have great interest and volition in social interaction. Yet, they have significant difficulty in taking perspective of others, in identifying, regulating and expressing emotions, and using appropriate social skills during social interaction. Focus of management will be varied depending on the spectrum of manifestation of the social and communication profile of the children with ASD.

    To learn more about ASD, please visit the following websites:

    1. The National Autistic Society: Myth and facts
    2. The Autism Society of America: Strategies and approaches
    3. The National Institute of Mental Health: Early signs and symptoms

Support from the whole community

In supporting our children with developmental disabilities, early and timely identification and management is undoubtedly crucial. Primary care doctors and social workers are usually the professionals that families will seek help from when they suspect that their children are having developmental disabilities. From the result of the Thematic Household Survey Report (2008) (2), for persons aged 18 and over, 48% would seek help from family doctor and 42 % from social worker when they suspected their children were having developmental disability. With over 90% of children aged 3-5 yrs in Hong Kong attending preschools, pre-primary teachers do play a vital role to help detecting children with possible developmental disability.

  • Primary care doctors:  Apart from early identification and timely referral, primary care doctors have to educate the parents on what normal child development is and how developmental disabilities  impact on children. They can also assist the parents to hold realistic expectations of their children. Ongoing support to the families is of the same importance.
  • Social workers:  When the social workers encounter families and children with developmental disabilities, it is of utmost importance to conceptualize the presenting problem as well as treatment framework under the light of developmental perspective. Parents, in particular for those children with behavioural and emotional disabilities are under significant stress. There is indisputable evidence that parents of ASD and AD/HD children experienced more stress than parents of children with other developmental disabilities. (5,6,7,8,9,10,11) As the mental state of parents have strong impact on the efficacy of their parenting (12), due support from social workers is also crucial.
  • Kindergarten teachers:  Kindergarten teachers have a crucial role both in early identification and management of the children with developmental disability. Teachers can equip themselves with knowledge and skills by referring to the Pre-primary Children Development and Behaviour Management - Teacher Resource Manual(13). If the teachers observe noticeable and persistent discrepancies in the performance of the children when comparing with their peers, initiate the discussion with the parents and make appropriate referral to MCHCs promptly. Having the knowledge and skills that help effectively manage these children during the class is also important. This involves adequate analyses of the presenting problem as well as appropriate and accurate application of strategies. Thus, teachers have to understand each behavioural sign as a possible tip of the iceberg, to apply basic behavioural theory and techniques such as ABC analysis for effective modification of the behavior, and to develop and integrate appropriate strategies to achieve effective management (13).

References

  1. Coleen A. Boyle, Sheree Boulet, Laura A. Schieve et al. (2011).  Trends in the Prevalence of Developmental Disabilities in US Children, 1997-2008.  Pediatrics 127;1034
  2. Thematic Household Survey Report No. 34 : Public Awareness and Attitudes towards
    Developmental Disabilities in Children.  Social Surveys Section Census and Statistics Department
    主題性住戶統計調查 第三十四號報告書 : 公眾對兒童發展障礙的認識及態度 
    政府統計處 社會統計調查組
  3. A Primer in Common Developmental Disabilities: Experience at Child Assessment Service, Hong Kong
  4. Lorna Wing (2002) The Autistic Spectrum: A Guide for Parents and Professionals  Constable and Robinson Limited 
  5. A. Dabrowska1, E. Pisula (2010) Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome  Journal of Intellectual Disability Research Vol 54, Issue 3, pages 266–280
  6. Amy M. Lyons , Scott C. Leon, Carolyn E. Roecker Phelps , Alison M. Dunleavy (2010) The Impact of Child Symptom Severity on Stress Among Parents of Children with ASD: The Moderating Role of Coping Styles. Journal of Child & Family Studies Vol 19:516–524
  7. Annette Estesa,  Erin Olsonc, Katherine Sullivanb, Jessica Greensona, Jamie Wintera, 
    Geraldine Dawsond, Jeffrey Munsonf (2013) Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders Brain and Development Vol 35, Issue 2, February 2013, Pages 133138
  8. Barry Trutea*, Karen M. Benziesb, Catherine Worthingtona, John R. Reddonc & Melanie Moorea (2010) Accentuate the positive to mitigate the negative: Mother psychological coping resources and family adjustment in childhood disability. Journal of Intellectual and Developmental Disability Vol 35, Issue 1,
  9. Jennifer Theule, Judith Wiener, Rosemary Tannock, and Jennifer M. Jenkins (2013)  Parenting Stress in Families of Children with ADHD: A Meta-Analysis. Journal of Emotional and Behavioural Disorders 21(1) 317
  10. Peishi Wang, Craig A. Michaels, Matthew S. Day (2011) Stresses and Coping Strategies of Chinese Families with Children with Autism and Other Developmental Disabilities.  Journal of Autism and Developmental Disorders Volume 41, (6), pp 783-795
  11. Stephanie A. Hayes, Shelley L. Watson (2013) The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, Volume 43, Issue 3, pp 629-642 
  12. Sherryl H. Goodman, Matthew H. Rouse, Arin M. Connell et al. (2011) Maternal Depression and Child Psychopathology : A meta-Analytic Review.
  13. Family Health Service , Department of Health (2012)Comprehensive Child Development Service – Pre-primary Children Development and Behaviour Management – Teacher Resource Manual
  14. Related links for reference