About 70% of couples who have a child with autism end up in a divorce, according to an independent study. This rather shocking revelation was made by Dr Amporn Benjaponpitak (in reference to the situation in Thailand), as she commented on the stigma related to autism, and the challenges faced by families with an autistic child – when they are not positively supported by health services and their local community.
Dr Benjaponpitak, Director, Rajanukul Institute, Department of Mental Health, Ministry of Public Health, Thailand, was among the panellists of the Autism Forum at the WISH 2016 summit held in Doha last week.
In an exclusive interview with Community, the panellists spoke on the stigma associated with autism; the unfortunate victims it has created – the children suffering from the condition as well as their families; and the need for an integrated approach to the situation.
“It is important to educate the public and bring about awareness on autism, to remove the stigma. Equally important is the need to educate parents on how to take care of the needs of the child afflicted with the condition, while extending support to the entire family. So when we screen a child for autism, we also assess the family to understand their stress levels. Based on the assessment, we offer the families various stress-relieving programmes to help them cope. We also try to help families through various community programmes. This has given us good results to the point, where it has helped some couples understand each other better and even helped their marriage. So early detection helps both – the child with autism as well as the entire family,” Dr Benjaponpitak explained.
As of 2010 there were an estimated 52 million cases of Autism Spectrum Disorder (ASD) or autism worldwide – this represents a substantial increase in the condition over the previous decades. ASD is primarily a lifelong condition for which there is currently no cure.
“From our experience, early detection and intervention has been proven to help a child’s overall development. At the Maldives Autism Association (MAA), we focus on early intervention and help children as young as 18 months. It facilitates their ability to live a well-rounded life where then can connect with their peers and family,” pointed out former first lady Ilham Hussain, who is also founder and chairman of MAA.
Describing the challenges posed by ASD on the entire family, she stressed the importance of involving parents and the community, when creating health-provider facilities – from the planning stage to actual service delivery.
“Ignorance of facts, coupled with the stigma related to autism was a major issue in Maldives for years and this meant afflicted children often went undiagnosed. So we started a ‘care and support’ group for the benefit of the affected families and this approach initiated a nation-wide change. Training of teachers and building awareness through media, have been other important factors that have contributed positively.
“Specialist therapies are expensive and a huge drain on an average family’s income. Our approach must be inclusive and our commitment to improving lives must be steadfast with a long-term vision,” she maintained.
Prof. Colleen Adnams, Vera Grover Professor of Intellectual Disability, University of Cape Town, said, “Having a child with autism can be challenging: on one side are family members who struggle to understand and communicate well with the child suffering from the condition; on the other side are the difficulties faced by the child with autism, in understanding and making meaning of the world around them. All of this impacts families in a variety of ways.
“There is huge stress on the families and it is indeed very difficult; but we should not underestimate the resilience of the families who have good support networks. While we hear of the struggles of these families, we also hear the success stories of families where the persons affected by autism are often a great source of joy and add to the value of the family. So there is a wide spectrum of impact. It is important to have an integrated approach where the needs of the child affected, as well as their families are taken into account. This helps to make the pathway to care more seamless.”
Commenting on the importance of a wholesome approach by doctors, Dr Wafa al-Yazeedi, chairperson of Physical Medicine and Rehabilitation Department at Hamad Medical Corporation and a member of the audience, emphasised, “Physicians often tend to think about the quality of recovery more than the quality of life, and it’s time to step outside this box. Besides being treated for autism, people with ASD need to be accepted as welcome members of the community and need to be provided with access to the same quality of life that others enjoy – to receive access to education, and then to be able to work and carry on with life. Physicians have a responsibility to educate the community and lead outreach programmes for the benefit of people facing challenges, be it autism or another kind of difficulty. These individuals have the right to a life with dignity; they are not disabled, they are just differently talented; this approach will help reduce the chances of other issues like stress and depression, that are generally on the rise.”
Dr Muhammad Waqar Azeem, chair at Department of Psychiatry, Sidra Medical and Research Center, also underscored the need to take a more thoughtful and considerate view of the innocent victims of ASD, “We need to stop addressing the afflicted individuals as ‘patients’. They are people who deserve dignity and our understanding. The support needed by the families concerned cannot be overstated. I am glad to say more and more families are willing to talk about their children who are affected by ASD and this positive approach helps reduce stigma.”
Several parents who took part in the discussion clarified how support from governments and society was crucial in their challenging journey.
They also expressed the need for more related information to help families of children with ASD. “We are grateful for the measures taken to help children with autism and look forward to steps that will help adults suffering from the same condition.
“Community-led outreach programmes and media also have a crucial role in building awareness,” they said.
From left, Ilham Hussain, Dr Amporn Benjaponpitak, Prof Colleen Adnams, and Dr Wafa al-Yazeedi.
