Deb Keen is Professor and Associate Dean Research at Australian Catholic University, Australia and has worked with children and adults with Autism Spectrum Disorders (ASD) and their families, as a psychologist and researcher, for over 30 years. She has published extensively in the area of developmental disabilities and autism.
Sylvia Rodger is Professor and Head of Division of Occupational Therapy at the University of Queensland, Australia. She has 30 years of experience as an occupational therapists and worked with families with children with ASD during ten years of private practice, and more recently through her involvement in research projects aimed at building stronger families with a child with ASD.
Here, Deb and Sylvia discuss their new book, Working with Parents of a Newly Diagnosed Child with Autism Spectrum Disorders, and the important role that professionals must play in empowering parents to fulfill their roles as 24/7 caregivers of children with ASD.
Can you tell us a bit about your backgrounds, and what experience(s) motivated you to write the book?
We have worked together for many years during which we have researched early intervention provision for parents with a newly diagnosed child with ASD. I am not sure exactly what brought us together, however we conducted our PhD research under the same supervisor at different periods of time and were both working at the University of Queensland when the opportunity to join forces to apply for federal government funding through the Stronger Families initiative arose. Our backgrounds are both similar in parts and complementary.
Deb: I began my career as a psychologist working at a large institution for children and adults with intellectual disabilities at around the time of the deinstitutionalisation movement. This work motivated me to find ways of supporting people with developmental disabilities to live rich and fulfilling lives in the community. During the next 20 years or so, I worked for government and non-government services supporting children and adults with developmental disabilities and their families in home and community settings. Much of this work involved people with ASD, particularly those with significant communication and behavioural difficulties. I also pursued further study during this time, completing a Bachelor of Special Education at Flinders University and a Master of Arts in Education at George Washington University. My PhD, which I undertook at the University of Queensland, investigated communication development in young children with ASD.
Sylvia: My background is as an occupational therapist and I have worked with children and families for some 30 years in community and school settings, as well as in private practice with children with ASD many of whom were just being diagnosed or had just received a diagnosis. For much of my work life I have been an academic and researcher at the University of Queensland, having completed a Master’s in Educational Studies (Special Education) and a PhD across education and occupational therapy. My Master’s thesis focussed on siblings in families with a child with a disability, and my PhD involved a study of parents and other team members’ engagement in individual education plan (IEP) processes and how we engage parents as meaningful team members in this process. I have a strong interest and research experience in identifying hallmarks of family centred practice, empowering parents as children’s long term carers and working in naturalistic settings such as the home and the community. My earlier research in play of young children with ASD and how to support their play linked well with Deb’s background in communication and challenging behaviour.
One of the most important and until now neglected areas has been ‘what happens after diagnosis’. Why do you think this is?
We have found that for parents, their difficulties around diagnosis often begin well before they get the formal diagnosis. They often tell us how they knew something was ‘not right’ but getting a diagnosis often took many months or even years. There is no biological marker, so unlike some genetic disorders that can be identified at birth, ASD can only be determined by a set of behavioural symptoms or characteristics. This means children are not identified at the same age and until now there have not been any services that swing into action immediately after the diagnosis is made. Once the final diagnosis is made, there are so many interventions out there for parents that it is difficult for them to work through the maze of options to know what’s best for their child and family. Some providers claim miracle cures and this offers false hope to parents. ASDs are lifelong conditions; there is no miracle cure. There is also no quick fix or “one size fits all” intervention. This adds to the complexity of decision making during a time when parents are coming to terms with the diagnosis of a lifelong condition.
We also know that parents easily fall between the cracks of government systems at this time. For example, in Australia making a diagnosis fits within the purview of health systems (paediatricians and psychiatrists, with allied health professionals such as occupational therapists, psychologists and speech pathologists providing information which can assist with a diagnosis). Interventions tend to fit within the scope of education – early intervention or early child care services or the disability sector, which also offers early intervention for children with intellectual and other neuro-developmental disabilities. In addition there is a myriad of private providers – therapies, not for profit autism specific intervention services, etc. Hence, parents are faced with having to quickly learn about three different systems – health, education and disability sectors – plus what is on offer locally from the private perspective. Even for professionals who know these systems, keeping up with service options is challenging. We know that when there is a diverse range of providers, communication between professionals, systems and families becomes more challenging and time consuming and typically parent satisfaction with service provision is reduced. So for all these reasons the time around a diagnosis is potentially fraught for parents and also challenging for professionals.
What are some of the specific obstacles that parents and practitioners face in this critical time, and how can the book help?
Because of the number of different services that potentially become involved at the time of diagnosis, parents are often consulting a number of professionals in an attempt to find the best therapy interventions for their child. There can also be waiting lists for many intervention services so during this time, parents are often keen to find out what they can be doing immediately to help their child at home. They may lack confidence about parenting a child with ASD which can contribute to their sense of parenting stress. Hence, there are several challenges for practitioners; (1) working with parents who are often feeling very stressed and may be experiencing a range of emotions from grief, relief at finally having a ‘label’, sadness, anger, etc.; (2) ensuring the provision of accurate, evidence based information about the effectiveness of the interventions offered and of effective parenting strategies they may use in the home; (3) facilitating good communication between the service providers involved so that each practitioner is not working at cross purposes; and (4) helping parents to set realistic short term goals for their child and family.
This book can assist by focussing specifically on helping professionals establish parent-professional partnerships which are the basis for productive working relationships, helping professionals engage in effective goal setting with parents and in enhancing parenting skills and practices that will alleviate parenting stress. It provides details about how professionals can provide information to parents using a framework that addresses the content of parent education, principles of adult learning and evaluation of outcomes within a family centred early intervention context. In addition the book provides a series of home based strategies that can be used by a range of professionals to facilitate parents’ competence in interacting and playing with their child as well as tackling specific issues such as eating, toileting, dressing, bathing and other daily routines.
A large part of the book is devoted to parent-professional partnerships. Why was it so important to include this topic?
The reason parent-professional partnerships are so critical is because we must first and foremost acknowledge that parents are children’s long-term carers and advocates. As professionals we typically come in and out of children’s and families’ lives, and even for those who remain employed with one agency for a considerable period of time, we are not the adults who are full time, 24 hours a day, seven days a week with these children.
Hence we must acknowledge our privileged position as well as the limitations of our position and expertise. If we are to work effectively we need to establish partnerships with parents who are there for the long haul. This sounds like a deceptively simple thing to do, but establishing partnerships requires much more than just establishing rapport and being empathetic. This requires a genuine interest in the child and his/her family, having a clear understanding of our expertise as professionals and the limits of this, and respecting the expertise about the child and family situation that parents bring. It requires working collaboratively to understand parents’ concerns and priorities and to develop family and child goals that we can work on collectively. Rather than seeing this as a ‘dilution of professional practice’, this requires professionals to be clear and confident about their expertise and not threatened about letting this go, using our knowledge to inform and up-skill parents so that they are better able to parent their child at home and to incorporate relevant activities into their daily routines, and empowering them to advocate for their children over the long-term.
This is no easy task as different parents have different desires and capacities to take on such roles with their children. Professionals need to feel comfortable as facilitators of parents’ learning and engagement with their child at home, rather than seeing themselves as therapist experts who work one-on-one with children. While the latter is sometimes necessary, the former is where we can have the biggest long-term impact on helping parents realise their full potential and assisting them to maximise their daily interactions with their child so that they become more responsive to their child’s needs and communicative attempts. This builds positive parent-child relationships. The chapters in this book help professionals to facilitate these skills in parents.
What do you hope readers will take away from this book?
There are many books out there for parents and professionals in the field of ASD interventions, parents’ stories, guides for parents, etc. However there are fewer books that focus on the time at or around a diagnosis of ASD from the perspective of helping professionals work effectively with parents during this period. This is a time when parents often come into contact with a myriad of health and educational professionals for the first time and when parents are understandably overwhelmed with the diagnosis and all the things their child is not able to do. The process of diagnosis typically focuses on the child’s deficits because it is often the things the child can’t do or hasn’t learned that determine whether the child meets diagnostic criteria for the disorder. This can leave parents seeing a bunch of problems and losing sight of their child’s strengths and abilities and the contribution they make to the family. It is our hope that professionals learn from this book how effective partnerships with parents can lead to the development of collaborative goal setting with families and how they can help parents to master strategies that will foster responsive interactions with their children. We also hope that professionals will gain a more in-depth understanding of how to help parents manage challenges such as sensory issues that impact on children’s daily activities and functioning and how to facilitate play in home, child care and community settings.
Copyright © Jessica Kingsley Publishers 2011.