Ms Saima Wazed Hossain champions for Autism Spectrum Disorder

Ms Saima Wazed Hossain, WHO Champion for Autism in South-East Asia Region, has been drawing national, regional and global attention to Autism Spectrum Disorder (ASD) which begins in childhood but tends to persist into adolescence and adulthood. It consists of a range of conditions characterised by some degree of impaired social behaviour, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively.

Joining forces with WHO in the Region as a Champion for ASD, she stresses upon adopting a more inclusive approach with appropriate health, educational, social and economic support for people suffering from autism spectrum disorder and their family members to enable them to live productive and happy lives.

Question: What inspired you to become a strong advocate for Autism Spectrum Disorder?

Autistics or individuals on the autism spectrum have always existed. If you look at many individuals throughout our history, who were known to be talented but with quirks or unusual traits, you realize that those traits now are identified as being on the autism spectrum.

I find individuals with ASD to be unique and talented and largely misunderstood. Their sensitivities to sensory stimulations prevent them from interacting with most people in the socially expected way. We don’t yet know exactly what environmental factors they or their parents and grandparents have been exposed to that causes those characteristics to be enhanced or expressed, however, we as a fast-paced global community seem to have stopped cherishing individuals and their uniqueness.

It is certainly important to help these individuals to function more successfully. We also want to reduce their symptoms that are painful and harmful but we do not want to essentially change who they are as human beings. We want to enable them to be successful, happy and productive. The growing social pressure to dress, talk, and behave in certain expected ways has led to a lot of social discourse on skin colour, body type and religious beliefs, but not enough on our neurological differences.

We should develop a health system which can help recognize symptoms that are problematic, prevent them from increasing and help reduce the negative impact it has on the individual and their family members.

My interest in autism is because I feel hopeful that with appropriate health, educational, social and economic support those with autism spectrum and their family members can live very productive, happy lives.

As a mental health professional with training in both clinical and educational psychology we learn about so many complicated conditions and treatments/interventions which are like bandages on wounds – they are healing to only a limited extent. I feel that we could do so much more if we focused on preventing those conditions from becoming problematic if we could only identify the signs early and provide the right interventions and support to the family.

The mental health field as a whole has stagnated for decades. As much progress has been made in identification of physical diseases, identifying conditions of the mind or brain (which can impact even the physical body) seems to have hardly evolved.

Autism is one of the most complicated disorders. This and all mental health disorders are in my area of interest and I hope by significantly impacting one disorder it will begin the right kind of discourse on the others as well.

Question: Is there enough awareness on ASD?

We recognize April 2nd as World Autism Awareness Day, and celebrate that day with enthusiasm. In fact, in Bangladesh, not only does every organization hold a variety of programs (art exhibitions, parades, blue lighting of buildings etc.) but we also hold a national cultural show attended by the Prime Minister as the guest of honour. And yet we still do not accept those with autism as part of our everyday lives. There really isn’t enough awareness because there is not enough understanding, and not enough acceptance and tolerance.

And another huge aspect of awareness that is missing from our repertoire is acknowledging the huge emotional, psychological, social and financial toll it takes on the family members, especially the mothers who are the primary caregivers. In every single family with a child with autism I hear stories about mothers (and sometimes both parents) who have been compelled to cut short their brilliant careers because one of the parents has to be home for full time care, or the family has to relocate (as a whole or separately) to find specialized treatment or services. Not only are the interventions expensive, they are physically and emotionally exhausting, especially when many of them do not have the expected effect. The divorce rate in families with disabilities is significantly higher than in the average population.

In Bangladesh we have an added complication where mothers are blamed for causing the child’s autism and abandoned by the husband and their families. Another issue that is rarely discussed is the role of siblings, although they can often be a positive influence and very helpful. Parents who are overwhelmed have limited time for them which often impacts their social and emotional growth. Without the full support of the community in which the family lives, the coping mechanisms of the family are sorely challenged. Therefore, the entire community needs to be understanding, accepting, supportive and tolerant towards people with autism and their families.

These are issues that exist across countries and cultures and occur in every part of the world. The day we start to fully recognize and address these concerns, we can then say that there is awareness on ASD.

Question: What policy level changes are needed to appropriately address ASD?

Many changes are needed. Some of these changes are about establishing the legal rights of people suffering with ASD to access certain basic services that are ensured for all citizens of a country as their inalienable human rights. However, simply making a policy is not enough. We also have the responsibility to ensure we provide the right kind of support and an adequate mechanism for them to resort to judicial services when their human rights are violated and policy is not implemented.

The other aspect of policy level change is removal of barriers that prevent individuals with autism from accessing their inalienable human rights. These barriers are often effective policies created for all citizens, and work well when you do not take into consideration the unique challenges of ASD.

In Bangladesh we recognized that there were a lot of these ‘unseen’ barriers in place. Once we began raising awareness in 2011 – with significant help from the highest government offices, with the Prime Minister herself being a strong advocate of disability issues – we realized a better coordination was needed among the various ministries to implement disability supportive programs. We therefore began working on two fronts simultaneously. We formed a multi-ministry task force from eight ministries - health, education, social welfare, women and children affairs, labor, primary and mass education, local and rural development and finance. The task force held monthly meetings. In order for the task force members to work efficiently, prior to its formation, I personally met with each minister individually, explained to them my ideas and the needs of the community and ensured that the task force members were fully mandated to address the autism issue. This task force is now the National Steering Committee and currently has 14 members. It is supported by local experts and parents who are in the advisory and technical guidance committees. Through this multi-tiered and multi-sectorial collaborative effort we have made significant changes in our policies in Bangladesh: we have a new Disability Law, a National Neurodevelopmental Disorders Protection Trust Act and have ensured that ASD issues are addressed and funded in every ministry.

Every country has their own set of policies and programs. Some of those come from ingrained social beliefs and practices. But one thing is for sure, policy level change has to go hand in hand with increasing awareness, social acceptance, tolerance and understanding. Policy changes have to develop from within and require expert guidance and support because autism and the needs of affected individuals and their families cannot be simplified.