Prioritizing Neurodevelopmental Disorders at Policy Café

Prioritizing Neurodevelopmental Disorders at Policy Café

On August 7, 2014 the Centre for Research and Information (CRI) organized a Policy Café on “Prioritizing Neurodevelopemental Disorders” with Saima Wazed Hossain with the engagement of students, parents, young psychologists, and relevant professionals and representatives from different ministries. During the event, attendees shared opinions, thoughts and suggestions on the discussion issues, the participants had the opportunity to choose among various sessions to discuss topics and develop recommendations. Topics included: Introduction of Saima Wazed Hossain, Definition of NDDs, The initial steps taken by the government in this regard, Policies & institutional development, Research & skill development; and Awareness raising & services.

Interaction with Saima Wazed Hossain

The segment was begun with the introduction of Saima Wazed Hossain. She was asked some personal questions by the participants such as when she first decided to work particularly on Neurodevelopment Disorder?

Saima Wazed Hossain: I always wanted to study psychology, things related to mental health, especially since I was in class (grade) eight or nine. Not sure if it had any particular reason. Perhaps my experiences as a student, experiences from my

family influenced me to explore how to understand people better. Things like: Why people do certain things? Why they react in a certain way? How they cope with [such situations]? In fact my very first memory about my mother-aunt is their tears…their

sorrow. In fact what had happened on 15th August…the most shocking…someone growing up [in such difficult situation]… I’d witnessed all these and I believe, perhaps such experiences led me to understanding and analyzing people. Usually I’m a quiet person. I’ve been quite shy in fact. I’ve always preferred listening to talking. Considering everything, eventually I decided to study psychology…explore more as a way to understand people.

Mahmuda Sultana Piya (Student, Dhaka University): Firstly, I’d like to congratulate Saima Madam that you wanted to study psychology and you managed to do so. Indeed you’re fortunate. Our parents are quite traditional and would like to see us only as doctors or engineers. Or those who couldn’t do well should choose Business Studies. Since it’s a live TV programme, would you urge our parents to let us choose the subject we really want to study, to conduct research if we want to. They should cooperate and encourage us.

Saima Wazed Hossain: I’d like to urge all parents to support and encourage their children to pursue something they feel passionate about. If we’re passionate about something we can go really far. I’ve been through all these. Even my mother never t

hought I’d complete Masters and go beyond. I’d never been a meritorious student. I was especially scared of maths, physics whereas my family members were really fond of them. The most frightening was the multiplication. I could hardly manage up to five times table. My mom in the end was okay. But my brother used to tease me and my dad was not much hopeful.

What we know about NDDs

This segment was focused on the Neurodevelopmental Disroder (NDDs), in specific, what people think about it and how much people know about it. Saima Wazed Hossain herself raised the question to the audiences: Over the past 3 years we talked a lot about Autism, disability and when you hear the word ‘Autism’, what comes to your mind?

Shubashish Paul, (Srot, Chittagong): Autistic are special children who are very advanced in one sector than any other normal child. They are different from the regular children in terms of mental growth. For example, the child who is good in Math that child would be ahead from the normal child in that particular subject. Therefore, Autism to me is highly positive.

Zakiya Yasmin (Student, Dhaka University): I have an uncle who is autistic and had little physical growth and I had observed that he leads a very routine life and get very anxious or angry when the routine is ever disrupted; there is another matter that is when the people he likes very much like his mother, maid and niece are hurt, it hurts him as well, and what I understand from these is that they have really strong feelings.

Dr. Touhidul Islam Khan (Parents Forum): In spite of being a doctor I used to not know about Autism. In the year 2008, Autism was in novels, now I know about its practical side. During the eid I brought my son to the masque and I briefed the people about autism who were beside me and they helped me a lot to take care my child that made me overwhelmed with their acceptance.

Saima Saiyara Sajid (Student, BUET): I have an experience with my cousins’ child, we found her to be autistic when she was two years old and did not speak a lot. Later, when she went to special school, her verbal performance became better. Thus, for me autism is inability to communicate properly with others is their main problem. However, they are extremely talented in certain things.

Dr. Rownak Hafiz (Chairperson, Autism Welfare Foundation): Autism is basically a Neurodevelopment Disorder. Today’s scientists say a child carries this in his/her brain. It’s not a mental disorder, not caused by parents’ negligence. Autism is often called invisible impediment. Autistic children’s main challenges: problem with communication and slow learning. Some of them speak, some don’t. Around 10% of the Autistic children are born with extra-ordinary talents. They like repetitiveness, like eating the same food, wearing the same dress, playing with the same toy. They all are highly talented in one field like art, or computer skills or study. These parents have very hard time, but it would require even the parents without autistic children to come forward and give the autistic children a social platform.

Saima Wazed Hossain: As per Dr. Rownak Hafiz explained, Autism may be a small word but it’s a highly complex disorder and that’s why it’s also called Autism Spectrum Disorder as this show has variations. We usually examine some key areas: communication, gross motor development, speech and language, and social interaction to derive whether it’s Autism Spectrum Disorder or not.

Initial steps taken by the Government on Autism

Asif Muhammad Siddique (Parents Forum): I am glad to be here and when Saima Wazed asked what we know of autism, some matured answers came up. However, this is not the scenario everywhere, we have observed that these children are kept home and they are neglected instead of extra nourishment. There are some schools for autism, the government schools are accepting autistic children nowadays but we are still facing barriers from private schools, which are coming from both parents and authorities. Now we have law and order to protect these children which has been recognized last year through your help. I wish to conclude by answering a question which was asked of you that is, if any of your children is autistic? Your answer was no, we think all of our autistic children are yours and you must to stand by them.

Saima Wazed Hossain: You have given a huge responsibility and I will try my level best to fulfill this responsibility. We organized a conference in 2011 where our primary objective was to generate awareness on to this complex disability disorder especially among parents and families. We wanted to create social acceptance. It took us a year to conduct the situation analysis and prepare a white paper. We realized generating awareness would be an ongoing major task. As to what else need to be done, we focused on the broader picture to avoid ad-hoc/short term initiatives. For instance, we identified a number of activities: early intervention, identifying in-country facilities for proper treatment, building capacity of the doctors and psychologists, ensuring access to education for children, creating employment opportunities for adults with Neurodevelopmental Disorders. In this regard, a Steering Committee had already been formed. The first Disability Welfare Act 2001 wasn’t very comprehensive and was flawed. The new 2013 Act contains a separate segment on Autism. It has been formulated in line with UN Convention on the Rights of Persons with Disabilities. Moreover, a Trust has been formed to help families financially where they have grown up members with Neurodevelopment Disability.

Policies and institutional development

Golam Robbani (Chairman, Neurodevelopmental Disability Protection Trust of Social Welfare Ministry): The Trust is one of present govt. mandates to ensure the rights and privileges of the persons with Neurodevelopmental Disorders. It aims to ensure equal rights of people – both rich and poor – as to their education, life and livelihood, health etc. With the District Commissioners as Chair, we are planning screen children with Neurodevelopmental Disorder to offer our services to the parents and other community people.

A.S. Mahmud (Education Ministry): Awareness among teachers is very necessary because every classes are consisted of minimum 60 students, if one child is disabled then neither the students nor the teachers react properly nor they attempt to make socialize with the child. National Academy for Educational Management (NAEM) brought 27 master trainers to train teachers of madrasa, primary school and other government school teachers where they are trained to only behave accordingly with autistic children. From 2011, we are bringing this issue in the text books of std. 9 & 10 to aware the students. Disable friendly infrastructure such as bathroom and stairs is being constructed. NAEM attempted to build Autism Academy in order to encourage the teachers to address this issue and train them up properly. To be mentioned, this ministry also set the rule that this kind of children will also get 20 minutes extra from regular student during the exam.

Research and skill development

Afroza Sultana (Vice President, Proyash): I want to spread my words to younger ones who are here today, we have started the work but you guys have to take it to a newer level to achieve the ultimate goal of curing this disorder. As Saima Wazed Hossain herself had mentioned she remained in the background.In fact, she’d been the driving force in accelerating the process of improving the situation of Autism/Nuerodevelopmental Disorder, generating awareness, spreading the pertinent messages across, ensuring education and professional skills development. Actually she wasn’t in the background; either in person or through emails she’d advised us as to how to go about including when to prepare the plan of action, when the Steering Committee would be formed, what would the Technical Committee entail, what were the pertinent processes; she’d been constantly in touch. We’re working with the Early Childhood Development Programme with children old as young as two-years. We are conducting parents-child stimulation programme, training parents as to how to handle the child at home. We’ve been to all the Ministries; we’ve trained people from the Primary and Secondary Education sector on inclusive education. Now many (autistic) children are completing primary and secondary level and appearing at the PSC, JSC. This year some are sitting for the SSC exam which was not the case even a couple of years ago. Now the teachers are much more aware about how to address the issue, how to teach the kids. We’ve prepared a guideline for teachers, visited different schools, and organized training for them. We actually need a large number of counselors and psychologist. In the near future, we wish to establish a special education university.

S.M. Abul Kalam Azad (Chairperson, Clinical Psychology Department, Dhaka University): Clinical Psychology Department is providing training on child development health, behavioral management in the basis of needs of children. We organize placement and internship program for our students with the affiliation of BSSMU. Of late, we run a clinic where we provide assessment and psychotherapy. Autism is not that kind of disorder that it is curable with medicine. It needs behavioral modification, parents’ behavior management, and special education for students and training for the teachers.

Gazi Nurul Kabir (Social Welfare Ministry): From 2000 to 2008, disability was a sensitive issue and the main boost in this campaign started in 2009 and till date it is rising. From the government different programs and procedures were implemented. In 2010, February this campaign was given a new dimension and in 10 April 2010, the very first autism research centre was opened and it became very successful and in 2013, the popularity of disability help centre spread through the whole country.

Research and skill development

Subhash Chandra Sarker (Joint Secretary, Health Ministry): The Health Ministry primarily deals with diagnostic and therapeutic treatment and awareness building as to Autism. We’re preparing for diagnostic training. We believe the CNAC at Bangabandhu Medical University could serve as the apex body in case of any final confusion as to identifying an Autistic child. We’re conducting district level training in all 64 districts to develop skilled human resources. They would at least be able to identify Autistic children and offer suggestions.

Sajida Rahman Danny (President, Parents Forum): As a simple parent, a mother has to create acceptance for her child in the family. The daughter of my colleague is here who is a highly talented dancer, singer and painter. My son had just finished his O’ Level Examination and is very good with computer and now his latest fascination is BANGLA CINEMA. The ratio of these children was 1:18, which has currently reduced to 1:16 in Dhaka; however, the situation is quiet worse in remote areas, which requires some attention. Unlike Dhaka, they are not exposed to doctors or internet, through which we are getting educated about autism.

Saima Wazed Hossain: My work is basically to do advocacy. I won’t promise something that I can’t deliver. What I can tell you, I’ll try my best when it comes to anything related to disability. The other things you need to shoulder like you’d been doing all these years. My responsibility is to place such demands to the right place, given the position that my mother and I hold. At the session, she urged to the corporate houses, banks and technical institutions to create the opportunities for the autistic children. Saima stated 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, and 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.

Some glimpses of questions & answers

Muhammad Rokonuzaman (student, Dhaka university): How did you start working on autism in Bangladesh and what are the problems you faced while working on it?



Saima Wazed Hossain: Back in 2008, I saw a small newspaper announcement of a conference on Autism in Bangladesh. I found a large number of parents there. I thought so many parents were concerned? Wanted to know (about Autism)? Then I visited SWAC and some other schools. Gradually, I got to know some parents, their specialists and people who work with the issue, what were the major challenges and what needs to be done here. The first thing that I remember was late MP Baby Moudud in 2008 or 2009 organizing a round table discussion given my interest in the topic. The round table served as a platform to know more about the organizations working on the issue and the parents. That round table was sort of the foundation stone where I came to know about the key challenges and some success stories. Also what problems they were facing.

Tajwar Quasem (Student): You have attended many conferences abroad and working here. What do they think of Autism in Bangladesh? Do you have any memorable childhood event that inspired you to work with Neurodevelopmental Disorders?

Saima Wazed Hossain: Bangladesh is now considered to be a leader as to disability, Neurodevelopment Disability as we played a critical role as to adopting the UN resolution, the WHO resolution. I have talked about disability in Bangladesh with so many people and organizations that we are now considered a leader. I can’t recall any personal experience as to disability. However I remember our family being always affectionate towards children and treating them equally. Whether a child behaved differently, it hardly mattered. So we grew up like that and could easily accept people with disability. Possibly for this reason I decided to work with Autism/Nuerodevelopmental Disorder as very few people, apart from the parents, were concerned. We always talk about our country’s economic growth, education plan and other issue. However, people hardly talked about disability even during 2008-09.

Zuhra Alam Miti: Whom do you suggest as a specialist for parents to go when they understand their child is different?

Saima Wazed Hossain: It is always recommended to go to a doctor, but more than a doctor, parents should be more aware as they spend the most number of hours with their children closely and they should also be able to identify symptoms. I’d like to also urge the doctors to observe the kids closely if his/her parents are concerned. The initial 10-15 minutes of observation may not be adequate. Pay heed to parents’ concern as they observe their kids every day. However, proper screening would largely depend on the specialist and their relevant knowledge and experience. The first thing parents should do is to go see a doctor and ask for advice and/or name of a specialist.

Fahmida Haq (Dhaka university): The existing support mechanism in Bangladesh seems adequate to provide mental or physical support to Autistic children?

Saima Wazed Hossain: It’s not really adequate in any country. We need to start bit by bit from where we are now. The word Autism may sound simple. However, be assured the initiatives taken as to Neurodevelopmental Disability can be considered a stepping stone as they are unprecedented. It’s a complex disorder but we can ensure support structures and services it can also serve other types of disability. No one will lag behind

Sifat Hassan Songeet ( Dhaka University): As you have worked both in country and outside the country so What are the differences between other countries and Bangladesh

Saima Wazed Hossain: I’d say our level of tolerance is much higher. We often accept unusual behaviors or mannerism. More importantly, we have our families to support us. Such support is especially needed for the children with Autism/Neurodevelopmental Disability with difficulty as to social interaction, communication etc. Family support is imperative so as to help them improve by means of constant interaction with the same age group, cousins, and relatives. The more they interact, the more they improve.

Mr. Nafees, NFOWD: People are working with Autism for quite long in Bangladesh. However, it got exposure once Saima Apa started working. But I’m a bit skeptical. As long as she’s here many initiatives will be taken. But will it stop once the govt. changes?

Saima Wazed Hossain: I do have the same apprehension whether the work I’m doing…the attention we’re getting…will lose focus in the future. Such initiatives are long term; to be continued for years. I’ve been working on this recently but those who’d been working for many years should continue. We’ve already taken measures to hold orientation and awareness sessions on Autism and other forms of disability for people like the Secretaries, Directors, and DGs. The Steering Committee that we formed was able to influence the different Ministries as to integrating disability, an important component, into their activities. When they’re properly explained as to the needs of disable people, they change their approach and take up pro-disability measures.

Program outcomes

Suggestions and Recommendations Came Out
– There is a need to work in the districts and regions outside Dhaka for people with disabilities, especially on the awareness front;
– 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;
– 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;
– 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;
– Each ministry should have a specific budget for addressing disabilities;
– 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.

Anwar Hossain (Chairman, SWAC): I think we need to start thinking about Adult with autism. When we have started SWAC in 2007, all the children of this organization are old now. I have my son who is autistic and he is 30 years old. Therefore, Adult with autism should be taken into consideration to create some sort of employment facility for this kind of special need adults.

Sumaiya (Student): Rather than emphasizing more on the autism there are other major issues like Down syndrome to look after. If I talk about the quota system, this is corrupted and harassing sector of our country. I hope these trends will be changed and people with autism will never face these serious harassing situations.

Jowaherul Islam Mamun (President, SWID): We’d like to thank the Govt. for passing two Acts in just two months – October and November 2013 – to benefit disabled people. Article 31 talks about registration and ID card for disabled people and Article 36 prescribes any form of discrimination and ensures compensation for any such discrimination. However, these articles come into effect from the date stated by the Gazette Notification. I’d like to urge you to advocate on our behalf for an immediate Gazette Notification.

Saima Wazed Hossain: At the conclusion, Saima Wazed Hossain 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.