With acceptance, parents can seek appropriate help to address their child's developmental disabilities or delay. — 123rf
“ALVIN – need your help. My friend and his wife are in denial about their six-year old daughter’s diagnosis of intellectual disability. They insist that she should still be placed in a mainstream school. I think that will not be good for her. What do I do to help them seek help?”
I discussed this question recently with my clinical psychologist colleagues at a conference and they shared that parental acceptance of developmental disorder diagnoses is a common concern, especially when there is no outwardly sign (such as autism), compared to Down Syndrome, where the condition is physically obvious.
Further discussions highlighted stigma, disempowerment and fear of marginalisation as barriers to acceptance of diagnosis.
We agreed that a way to address these barriers is to be curious about why they are there in the first place. By knowing the source of beliefs that maintain any denial of a developmental disability diagnosis, we can develop narratives to help parents understand the importance of a diagnosis and subsequent collaborative work between them and relevant health and education professionals towards rehabilitation and relative independence.
Now, why is it important to have a diagnosis when there is a developmental delay?
Developmental delay affects independent functioning and healthy development, as well as disrupts family routines and overall well-being. A diagnosis acknowledges that there is a problem and that it can be addressed using evidence-based treatments.
Diagnoses typically come from a comprehensive set of assessments by a qualified health professional or a collection of experts (where available). These assessments would cover multiple aspects of functioning and adaptive behaviour skills to rule out other possible diagnoses and zoom in on one or two highly likely conditions.
Strengths and deficits
The diagnosis is only a marker of what to do in treatment. What is more important is the profile we get from the assessment results.
This profile would tell attending professionals the existing strengths and deficits of the child, the symptoms of the diagnosis and a formulation of the presenting problem.
A formulation provides a better understanding of the background, potential triggers where identifiable, current maintaining factors of the problem and existing strengths of the child and family that can be tapped into for treatment gains.
An understanding of the components of a problem formulation can facilitate treatment plans. This planning includes identifying: (1) priorities for treatment, (2) the people involved, (3) the required changes, (4) the support system to facilitate these changes, and most importantly, (5) the measurements of the targeted changes.
My guess for why there is parental denial is there isn’t enough public examples of how diagnosis from a comprehensive assessment can empower a whole family to work towards treatment gains in their young member with developmental disability.
I must also admit that too often, these diagnoses do not come with a clear plan of action. Such lack of clarity and sense of uncertainty can disempower parents, who may then choose to continue being in denial.
This is supported by scientific literature that suggests the lack of awareness of the disorder and what can be done to address the threat of marginalisation of the family due to the shame of diagnosis, as key elements that contribute to denial.
It is understandable to not want to believe in something where data is unclear, leading to vague or simplistic actions or advice such as to get enough sleep, exercise more often, take medication regularly (where relevant), go for occupational and speech therapy, and learn to manage stress.
Practicalities need to be identified and quantified if we’re serious about making gains towards functional independence in children with developmental disabilities.
Treatment has no meaning if there are no clear measures that are agreed upon between the family and the treatment provider.
This is where professional services are as important as public education in beating the stigma and overcoming systemic barriers that maintain denial in parents with regards to diagnoses of developmental disabilities.
Research often show that denial comes from a place of fear and disempowerment. Research also show that denial is strongly associated with high anxiety.
Psychology Professor Esther Greenglass of University of York said at a recent conference I attended that denial is not a coping mechanism, because it actually leads to higher anxiety and anger.“Denial is a neurotic mechanism rather than a protective one,” she adds.
Therefore, providing families with resources that can ease their concerns and empower them to take actions that can reduce the symptoms of the diagnosis helps in making better progress in treatment.
Progress leads to positive prognosis of the condition. A good prognosis also improves the treatment outcome.
Allies in treatment
I would like to call upon relevant health professionals to be allies with parents in working out the importance of a diagnosis that comes with a realistic and practical set of recommendations.
These recommendations should also include clear measures to monitor the effectiveness of treatment.
Would all of the above stamp out stigma of diagnosis? Probably not. Many people still have a socialised fear of rejection and a strong sense of shame associated with diagnoses of developmental disabilities.
So, while it is important to weigh in the consequences of diagnostic action versus inaction, it is also crucial to address personal fears and stigmatising beliefs of parents, and to explore the values and motivations for denial and recovery.
Both sides need to work on something to address denial. Professionals need to work on empowering parents by providing practical information and support.
Parents need to work on their values and stigmatising beliefs, as well as their understanding that inaction does not help improve their situation. Seeking professional help is highly correlated with better outcomes.
One of the main reasons for early diagnosis and treatment is this: That there are tonnes of evidence from research literature to say that starting intervention early and maintaining it regularly over time with close collaborative monitoring by parents and service provider, produces the best outcome in functional independence.
A diagnosis is the first step towards progress. It provides us with a target to aim for.
What target? The reduction of symptoms by various means such as training the child in adaptive behaviour skills and executive function towards independence, as well as empowering parents and family members in dealing with the challenges that come with diagnosis and treatment.
Early diagnosis and intervention is beneficial not just for the family but also for the rest of the community. As a society, we should promote early intervention and provide support to families in need of such intervention.
It would give us functionally independent individuals who can contribute meaningfully to society. We know from studies that individuals with developmental disabilities can go on to live meaningful and fulfilling lives.
As a society, we need to be more inclusive and less judgemental so we can raise children – with and without developmental disabilities – in a responsive, caring environment so they all can grow confidently together.
In the next issue of StarFamily, the author will tackle parents’ dilemma when health professionals downplay their child’s condition when they seek medical opinion.
Dr Alvin Ng Lai Oon is a professor at the Department of Psychology, School of Medical and Life Sciences, Sunway University. He is a clinical psychologist by training and is passionate in promoting mental health literacy in the community.
