Centre for Research and Information (CRI) on 7th August 2014 (Thursday) arranged a Policy Café on the topic “Prioritizing Neurodevelopemental Disorders” with Mrs. Saima Wazed Hossain, global mental health advocate and Chair of the National Advisory Committee on Autism in Bangladesh.The principle focus of this particular event was to highlight the importance of discussing a subject of national importance which is unfortunately, relatively less known to the masses: “Neurodevelopmental Disorders” (hereinafter referred to as ‘NDDs’). Apart from raising awareness on a sensitive topic of contemporary significance, this also afforded the opportunity to know more about Saima herself, who has been at the forefront of raising awareness on this topic and policy making, not only in the national scene but also in the international arena.
The event was attended by around 110 participants, consisting of around 60 students and young social activists passionate and/or interested about the subject in question, around 25 young professionals working in various aspects of the mental health sector, parents of children with NDDs, experts on the field, various policy makers and other stakeholders. The programme was divided into five segments for ease of discussion and ease of participation, namely: a) an introductory segment on Saima herself; b) what is meant by NDDs and the initial steps taken by the government in this regard; c) policies and institutional development (which was in turn divided into two sub-segments, namely: i) what has happened so far; and ii) looking ahead; d) research and skill development; and e) awareness raising and services. In order to give the participants a better understanding of the issues, each segment began with a brief audio/visual presentation clip prepared by CRI.
The first segment saw a number of questions from participants regarding Saima’s family and professional life. Saima stated that she was interested to study on mental health from her childhood, in particular from when was in Class 8/9 in school. Although there was no one single reason which influenced her choice, she did want to learn about people. She wanted to understand people. She recalled how her mother, the current Prime Minister of Bangladesh Sheikh Hasina and her maternal aunt Sheikh Rehana inspired her to pursue her dreams. Her family tragedy, whereby she lost almost her entire maternal side of relatives including her grandfather, the Father of the Nation Bangabandhu Sheikh Mujibur Rahman on the fateful night of 15th August 1975, also played a role in this regard.
Her personal characteristics growing up also played a part in her decision to pursue a career in mental health. She explained how she wanted to understand people and analyze them. She also wanted to understand herself. She mentioned that she was shy and usually liked to listen more to people than to speak. During this segment, she recalled her life at a boarding school in India while her family was in exile to avoid persecution at home from hostile regimes. She recalled with fondness her memory of landing in Bangladesh with her mother Sheikh Hasina in 1981. She remembers that moment as a turning point in her life, as for the first time in that electrifying moment in Dhaka airport she fully appreciated the magnitude and gravity of her family name. Her realization of the love the people of this land had, and still has, for her family, also played a key role in convincing her to play her due part in improving the lives of Bangladeshi people.
One of the student participants asked her why she opted to study psychology given that she came from such a prominent political family. Saima lightheartedly replied that although subjects like law and sociology would have been the obvious choices for her given her family name, and although her own family members suggested computer science or business studies given the career progression options at that time, she opted to study clinical psychology as at that point of her life she used to feel socially awkward. As an introvert, she preferred not to speak in public, a pre requisite to life in politics or law. She was asked how she started to work in the field of mental health in Bangladesh and what problems or difficulties she encountered when starting off.
She recalled how seeing an advertisement in a newspaper in the year 2008 about a conference on autism in Bangladesh influenced her to enquire further as to the state of the topic in this country. She was extremely encouraged after attending this conference as she was inspired by the enthusiasm of the parents of children with NDDs and autism. She was therefore motivated to bring a systematic change in this area in Bangladesh. She also mentioned an incident from 1984 whereby she and her brother Sajeeb Wazed Joy (current IT adviser to the Prime Minister of Bangladesh and an upcoming politician) was motivated to donate their entire savings to disabled freedom fighters of Bangladesh, seeing their sorry state at that time.
She noted how following the conference in 2008, she visited schools, met and discussed with parents and teachers on a regular basis. Through her correspondence and travels, she came to know what needs to be done in Bangladesh. Baby Moudud (renowned journalist and close friend of her mother Sheikh Hasina) played a key role in introducing her to the relevant personnel working in this field seeing her interest and enthusiasm. Thereafter, she recalled helping organize a roundtable discussion. Through her endeavours, she came to know what problems people with disabilities and their parents faced in Bangladesh. She felt an urge to help people who don’t have the means to help themselves. She recalled how she wondered how so many people used to talk about the economy and other major issues, but very few people then thought or talked about people with disabilities, especially NDDs or autism.
At this point, one of the participants asked her to convey a message to Bangladeshi parents to let their children study what they want to study as parents in this country (and the entire South Asian region) have a tendency to compel their children to pursue career oriented fields of study only, like engineering or medicine. Saima gladly obliged and stated that every person, whether boy or girl, able or disabled, should study what they are passionate about. She empathized with the participant because she said she faced similar burdens of expectations from her own extended family members. She noted that every subject or field should be valued by the public. There are fields outside medical, engineering and that parents or guardians should allow their children the choice to pursue any emerging or uncommon field if that suits their aptitude or choice.
Upon being asked by the moderator about her family life, she said that she has been blessed with three daughters and one son. At this point, she was asked that since it is often thought that only those parents who have one or more children with NDDs or autism usually pursue advocacy in this field, whether she has anyone in her immediate family with such a disability. She replied with conviction that although none of her children have NDDs or autism, she nevertheless would have proudly stated so, if there were. Her point being that, she never discusses this topic in public as in her opinion, even if one or more of her children were afflicted with NDDs or autism, it would never have mattered to her and she would have treated them just the same. She introduced the audience to her two beautiful young daughters who were present with her on this day. She gave an example by presenting the question at the audience that does one necessarily have to be poor in order to work for poverty alleviation? She added that she came to this field because her academic qualifications and work experience made her an ideal candidate to pursue this field of inquiry and advocacy. She reiterated that it was primarily her sense of responsibility that convinced her to become an advocate for mental health issues.
She recalled how being a key organizer in the 2011 international conference on NDDs and autism held in Dhaka brought her to the public limelight. She added that it was not her intention to highlight herself as a public personality as she wanted to contribute from the background. The publicity just happened. She noted that she felt extreme frustration at the level of victimization people with disabilities faced in Bangladesh and elsewhere, even from their own family members. This primarily motivated her to take a more vocal and public role in this regard. One of the participants asked her how people outside Bangladesh thought and reflected on Bangladesh’s role in advancing the cause of people with NDDs and autism. She answered that Bangladesh is now a global leader in NDDs and autism. She explained how Bangladesh played a pioneering role in international forums such as UN and WHO, culminating in the adoption of several relevant resolutions, for which Bangladesh enjoys international recognition.
She then threw a question towards the audience as to what they think when they hear the word ‘autism’ in order to ascertain their level of knowledge in this field. One of the participants replied that autistic children are those who are a bit different from other children, often more intelligent than the others. Another participant responded that such children have a lack of adequate mental growth. She mentioned how one of her relatives, who suffered from one form of NDD, is very timely about everything he does. She added that this relative of hers is very precise about the manner and form of everything he does in his day to day life. Such people are more intense about their love; very protective and often have very strong feelings.
One of the parents present then took the floor. He added that despite being a doctor himself, until only recently, even he was not completely sure about what is meant by NDD or autism or what such terms entail. However, he also added that nowadays people are becoming more and more aware of the needs of people afflicted with such conditions. He added that while praying in the mosque during the last Eid congregation with his autistic son, he found that fellow worshippers were very receptive and cooperative about the condition of his child.
The mike then went to Dr. Rownak Hafiz, who is the Chairperson of Autism Welfare Foundation (AWF). A child physician herself, she explained the role played by her organization in addressing the plight of people with autism and then went to explain how this term is often misunderstood, often by highly literate people. She explained that autism is not a mental disease (as is often erroneously thought) rather it signifies some sort of impairment of the neural connections of the human brain, and given the variants, they are classed as a spectrum of disorders. She added that no two autistic persons are ever the same given the degree of variance. She also highlighted the need for social support for such people. One of the student participants then asked Saima the steps a parent should take when he/she first realizes that his/her child maybe afflicted with one form of NDD or the other. Saima responded that the first thing to do for such parents would be to seek medical help. They should consult a doctor without any delay as early diagnosis is crucial for identification and subsequent treatment and management. She added that parents are great assessors of such symptoms because they spend the most amount of time with their children. She noted that even though not all doctors are qualified or trained to deal with such cases, they can at least refer such parents to sources of specialist help.
One of the participants enquired how much resources are devoted to tackling this issue in the grassroots level, indicating regions outside the capital city Dhaka, especially in remote rural areas. Saima admitted that currently there is a shortage of pediatricians and clinical psychologists in regions outside Dhaka. Hence, early diagnosis and subsequent treatment is often the problem. Nonetheless, she explained that day by day, the numbers of trained professionals is increasing, slowly but steadily. At this point, the floor was given to Sajeda Rahman Danny, President of Parents Forum for Differently Able. She explained that parents often get devastated when they hear news of children being afflicted with one or more NDDs. Parents often find it difficult to accept such news. Parents have to struggle a lot, facing victimization and stigmatization even amongst their own extended family members. Hence, the initiative was taken to organize parents of such children under one umbrella to provide the crucial element of support.
Danny noted that firstly, there needs to be acceptance of such children, within their own families. She opined that such acceptance from parents is even more important than awareness building among the masses. She brought her own two children with NDDs, a daughter and son to the event, who she introduced to the audience. Both of them have various talents and participants were encouraged and motivated seeing the mother’s conviction and the children’s aspirations. The participants burst into applause when her son talked to them and outlined his future plans of becoming an actor when he turned thirty. As a parent at the forefront of the battle to educate people on NDDs, she expressed her optimism that at the speed Bangladesh is taking a leading role in this regard, she had reasons to hope that things will get much better in the near future. However, she also pointed out that the situation outside Dhaka is not as good as is desirable, as far as support mechanism for parents are concerned. She therefore recommended that more focus needs to be put there in the coming days.
One of the other parents of a child with NDD outlined how even some years back, there were parents who would tie up their children with disabilities rather than face the social stigma that came with such a state of affairs. Even now parents discriminate among their own children who are differently able. However, things are changing now. He thanked Saima for her contribution in bringing such incremental changes in Bangladeshi society as an advocate for this cause. He suggested that more needs to be done for autistic children in schools, especially in general schools where teachers are not particularly equipped to handle such challenges. He outlined how the situation is worse in private schools.
One of the other participants raised the issue of autistic adults. He noted that steps need to be taken to address their plight too. He thanked the government for enacting the Disability Rights Law 2013 and the Neurodevelopment Disability Protection Trust Act 2013. Saima recalled her journey from the 2011 conference in Dhaka to the enactment of these two pieces of legislations. She explained how the National Steering Committee was formed, how the Action Plan was formed, and so on. She explained that the first priority for her was to raise awareness among parents, general people and families for social acceptance of people with NDDs. She noted however, that awareness is an ongoing process and there is no scope to rest despite the achievements made so far.
The floor was then handed over to A S Mahmud, Additional Secretary of Ministry of Education. He explained his experience as a civil servant from 2011 onwards in developing the policies and institutions on NDDs. He then went to explain his Ministry’s steps in training the teachers to deal with children with special needs. He noted that they have developed 27 Master trainers, who will in turn train other teachers in schools. Modules have been developed for teachers training. Even his own Ministry officials have been instructed to always be vocal about this issue in order to raise awareness. He says that new school buildings are made disable friendly (with modified toilets and ramps). 9th and 10th grade textbooks of public schools have been amended with knowledge on autism and disability issues. Extra time is given for students with disabilities during exams. Special quotas for admission into schools have been provided for people with special needs. He explained the role of Autism Academy in training.
Saima added that social awareness and social acceptance is the key. She outlined how teachers are best placed to assess the needs of children with special needs, as apart from parents they spend most time with such children. She added that the current government’s initiatives will evolve over time to include training for teachers on behavioral management, classroom management, special techniques for dealing with people with NDDs etc. Currently, their special training is restricted to only the manner of behaving with children with NDDs. Gazi Mohaamd Nurul Kabir of Jaityo Protibondhi Unnoyon Foundation then elaborated his organization’s activities in support of disabled people. He recalled with gratitude the momentum this social issue has gained since 2009 onwards, when Sheikh Hasina came to power and her government’s overall policy of encouraging inclusive education. He even termed the current activities as a ‘silent revolution’.
Afroza Sultana, Vice Principal of Proyash, a special needs school, highlighted how Saima has played a key role in Bangladesh’s NDD scene. She called upon members of the new generation to take the job forward that they have started. She called upon students to do more volunteering work in this regard. She highlighted that a lot has been done already, but more needs to be done. She also highlighted what role her organization Proyash is playing in this regard. Not only awareness raising, now such children are getting proper education, with many of them having finished primary education and many on way to finish their secondary education. There are plans to open a university even for people with disabilities.
Saima added that there is a need for more psychologists and counselors for handling children with NDDs. She highlighted the need for more special needs schools and more modifications in conventional schools (both structurally and curriculum wise) to accommodate the needs of students with disabilities. She added that Dhaka University will soon start a course on communications disability. She mentioned that she has requested DU to form a multidisciplinary programme to deal with NDDs. Currently, NDDs are covered as a segment in the Masters and MPhil programmes on clinical psychology. She noted that teaching of children with NDDs needs a customized approach as individual needs of such children may vary depending upon the type of NDD each suffers from. Saima added that assessment is a prerequisite for treatment and management. Parents, social workers, teachers and health workers all need to be trained further to deal with such issues, as there is no alternative to that.
When the floor was given to the Chairman of Bangladesh Neurodevelopmental Disability Trust, he explained which four types of disabilities are covered under the Trust Act 2013: ASD; Down syndrome; intellectual disabilities; and cerebral palsy. He added that the importance given to this issue by the current government is apparent from the fact that the Prime Minster herself heads the advisory body for this trust. The Act envisages the formation of committees in every district, headed by the Deputy Commissioner (DC) along with participation of all relevant stakeholders. He added that they want to provide training for effective screening and diagnosis. They also want to provide support to the victimized parents. He pointed out that they are going to organize a national meeting soon to prioritize the policy issues regarding this topic.
Shomi Kaiser, a renowned Bengali drama actress, and a social worker for over a decade, made a few suggestions: She stressed the need for developing tools for diffusing awareness based on definition of autism and tools for early diagnosis. She highlighted that the media needs to play a more proactive role in creating this awareness, for example through dramas, cartoons etc. She enquired whether the government can provide instant advice on such matters through call centers, mobile messages, helpline. To this one of the officials present replied that the government has already taken the initiative for a mobile helpline, which would be supplemented in the coming days with related measures. Shomi also emphasized the need to disseminate success stories, whereby autistic or children with NDDs have turned out as being exceptionally good at something due to proper support from parents and others in their lives, in order to encourage more parents and families to provide the best of support to such children, without any discrimination or stigmatization.
One of the participants then raised the issue of employment of people with NDDs, autism or disability (both in public and private sector). He stressed on the need to concentrate on adults with autism and NDDs. These people need some form of employment for their minimum sustenance. He noted how they can be assisted in developing essential skills for employment and income generation. To this Saima replied that awareness is again, key in this regard. She stressed that people with NDDs can work, depending on the circumstances of the employment and the type of disability in question. Such as someone with speech disability can work conveniently in a sector which does not require much oratory skills for example. Given the proper training, these people can be a good workforce and contribute positively to the national economy. Many companies abroad are nowadays taking special projects to hire workers who have specific NDDS in specific sectors. One of the resource persons present noted how already Bangladesh has established adult activity centers, providing among others, skills development training to people with mental or physical disabilities.
One of the other experts noted that we need to increase the participation of persons with disabilities more in social activities, such as increasing their participation in sports activities for example. Saima added the example of someone she knows personally who, despite suffering from one form of NDD, made it to the school and college baseball teams in USA and even went to complete university education. Proper appreciation and support can enable such persons to achieve remarkable feats, she added. Some of the other suggestions which were made in the concluding part of the programme from various participants include:
First, more needs to be in the districts and regions outside Dhaka for people with disabilities, especially on the awareness front; second, if any quotas are created for people with NDDs, there is a need to ensure that quotas are not exploited or abused in any way; third, in order to volunteer in this field, one first needs to educate oneself, at least on the basics of NDDs and other forms of disabilities; fourth, all provisions (in particular Sections 31 and 36) of the Disability Rights Law 2013 needs to be brought into effect through gazette notification without further delay; fifth, each ministry should have a specific budget for addressing disabilities; sixth, physical disabilities and impairments should not take a backstage while the initiatives on NDDs are being implemented. NDDs and Autism should not de-prioritize other, equally pressing, issues; and lastly, civil servants need to be made more aware on disability issues generally as the task of implementing government policies rest on them ultimately.
The moderator asked Saima whether she has any plans to join politics anytime soon. To this, Saima replied that even five years back, she did not think that she would be sitting here today talking on this topic. Therefore, it is difficult to tell whether she’d be part of active politics in the future. For the time being, she wants to concentrate on her unfinished work regarding the mental health sector. One of the participants enquired of Saima as to the progress made in this regard via regional cooperation, especially with neighbouring countries like India, Sri Lanka etc. Saima mentioned the conference of 2011, and the launching of the South Asian Autism Network (SAAN). She pointed out that work on this front is ongoing. In the upcoming month of September, Dhaka is supposed to hold another regional seminar. There they will discuss how to make the regional initiative more effective and take it further.
As a concluding thought, Saima reminded everyone that the key to success in any such initiative is to hammer home the idea of humanity. Everyone should be more tolerant and accepting of others, notwithstanding the differences one may have with the other. She added that we need to stand by each other and learn to love each other as human beings first. Once that is established, success is virtually guaranteed. After the conclusion of the programme, Saima posed for photographs with all participants and informally had a word with many of the participants present. CRI arranged for a questionnaire to be filled up by the participants, one before the start of the event, and one after the event, in order to assess the impact of this resourceful session with Saima on the participants’ level of knowledge and awareness. This was followed by light refreshments.
Date and Time: 7th August 2014 (Thursday), 3.30 pm to 7.00 pm
Venue: Utshav Hall, Radisson Blu Water Garden Hotel, Dhaka.