WHO-SEARO Goodwill Ambassador for ASD Saima Wazed Hossain with the Honorable Prime Minister of Bhutan during a ‘Special Session’ featuring self-advocates. Credit: Rohit Vohra, APF

By Saima Wazed Hossain
DHAKA, Mar 28 2019 (IPS)

The Kingdom of Bhutan is a landlocked country surrounded by Bangladesh, India and the Tibetan region of China. It is a country that brought the term Gross National Happiness as a concept by which to measure a country’s progress. In April 2017 it celebrated WAAD by hosting the International Conference on Autism & Neurodevelopmental Disorders (ANDD2017) in Thimphu.

Not only did it bring together the senior most political leaders for both countries, Prime Minister H.E. Sheikh Hasina and H.E. Dasho Tshering Tobgay, but also Her Majesty the Druk Gyaltsuen, Jetsun Pema Wangchuk, wife of the King of Bhutan.

The 3-day conference, hosted by the Ministry of Health, Royal Government of Bhutan and co-organized with Ministry of Health & Family Welfare, Bangladesh, WHO-SEARO, Shuchona Foundation, and Ability Bhutan Society, the event was organized without any external funding partners and by invitation only.

The theme, developing effective and sustainable multi-sectorial programs for individuals, families and communities living with autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs) was actively discussed through open ended discussions by panels that comprised of experts, care-givers, parents and self-advocates addressing the core challenges faced by families and still left largely unaddressed in the era of the SDGs.

The inaugural ceremony at the Royal Banquet Hall was honored by the presence of Her Majesty the Druk Gyaltsuen, who launched a book titled, Guideline for Differently Abled Friendly Construction published by the Royal Government of Bhutan.

Panelists speaking during the session on ‘Early Identification’. Credit: Rohit Vohra, APF

Followed by speeches by the honored guests, debut of a short film on inclusion produced by Shuchona Foundation and a powerful presentation by Dr. Yolanda Liliana Mayo Ortega, Founder/Executive Director of CASP on ‘The power of two’.

This was followed by a High-Level Discussion on Enabling countries to successfully address ASD and other NDDs as part of their SDGs featuring participation by regional directors and representatives of UNICEF, UNESCAP, UN Women, UNESCO, IOM, ILO and WHO, country representatives and experts. Chaired by H.E., Sheikh Hasina, Co-Chaired by Dr. Poonam Khetrapal Singh, Regional Director of WHO-SEARO and moderated by Saima Hossain the discussion focused on common aspirations and not only set the tone of the Conference but the powerful remarks by speakers paved the way for an effective way forward so that children and adults with NDDs can be included in the global development agenda.

The majority of the conference comprised of 5 thematic sessions on identification, intervention, education, employment and independent living. Each session comprised of 2 panels with 7 participants consisting of self-advocates, professionals and caregivers.

The first thematic session discussed community-based early identification systems, focusing on issues in understanding screening vs. diagnostic evaluation and how rigorous methods can be implemented within the health system. Although early identification is of utmost importance, ASD is difficult to identify conclusively before 5 years of age, and panellists recommended that recognizing developmental deficits with the help of parents and caregivers, will ensure that relevant intense interventions are provided and conducted at the community level at the earliest ages possible.

Day 2 sessions focused on issues surrounding Models for Intervention Services and Evidence-based Intervention Programs. Successful examples of various community-based models for intervention delivery was discussed. The panel on Education explored how individuals with ASD and other NDDs have varying levels of skills and benefit from maximum time with same age typically functioning peers. Self-advocate, Dr. Stephen Shore emphasized the need for various models for appropriate education and variety of resources required for inclusion in all settings.

The Honorable Prime Minister of Bhutan speaking at the inaugural ceremony. Credit: Rohit Vohra, APF

A Special Session, featured self-advocates, Dr. Stephen Shore (USA), Daniel Giles (Australia), and Qazi Fazli Azeem (Pakistan) and a special guest Prime Minister  Dasho Tshering Tobgay. While each one’s experience was starkly different, it was an opportunity to showcase the uniqueness of ASD and how no two persons on the spectrum are truly alike.

Despite their differences in experiences, each of them has supportive families, friends, and a sense of community and belongingness. They emphasized the importance of individualized customized approach, the family as the central focus of services, developing a sense of self, as a pathway to effective self-advocacy.

The final day’s panels on employment and independent living focused on human rights and emphasized that the right to employment, earning and self-care is an important but often overlooked aspect of disability; the panellists, shared their successful models for training and living independently with varying degrees of support.

A Round-Table Discussion followed by the launch of the Regional Collaborative Framework for Addressing Autism by the Advisor for Mental Health (WHO-SEARO).

Government, civil society, and international organizations, as well as professional bodies and academia discussed the existing challenges of the treatment gap, lack of awareness and policies, stigma, paucity of financial, institutional and human resources, and the need for a coordinated response and intergovernmental collaboration for inclusive development.

A call was made to ensure cost-effective systematic response that is structured, coordinated and feasible for low-resource countries. In addition to panels, 11 technical workshops on the latest diagnostic and intervention tools, posters, and a side event of the international Early Childhood Development Task Force were held concurrently.

The Conference of 300 stakeholders from 31 countries not only adopted the Thimphu Declaration and Regional Collaborative Framework, but also compiled essential recommendations to ensure international resolutions are effectively implemented in the era of the SDG’s.

Following ANDD2017, the Royal Government of Bhutan has requested Shuchona Foundation to develop a multisectoral national strategic plan for ASD.

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Simon Baron-Cohen, Director of the Autism Research Center at the University of Cambridge, gives the keynote address during a special event held to mark World Autism Awareness Day. Credit: UN Photo/Eskinder Debebe

By Lyndal Rowlands
UNITED NATIONS, Apr 2 2017 (IPS)

Guardianship laws meant to protect people with autism actually deprive them of their basic rights and autonomy, according to experts on a UN panel.

When people with autism turn 18, their parents or other caregivers are encouraged to legally become their guardians. However, as Zoe Gross an autism self-advocate says the practice deprives people with autism of the ability to influence their own lives.

Gross was one of several panelists at a special event held to ahead of World Autism Awareness Day on the theme ‘Toward Autonomy and Self-Determination” at UN headquarters in New York on Friday.

The laws affect all aspects of a persons life, says Gross:

“Where you live, where you work, who you spend time with, whether you want to get married or have children, even whether to have medical procedures.”

In some states, people under guardianship lose the right to vote while in extreme cases Gross says that people under guardianship have been forced to undergo involuntary sterilisation.

“Regardless of whether your guardian is acting in your best interests or not, if you are under guardianship you don’t have access to the same rights that most adults take for granted,” said Gross, who is Director of Operations at the Autistic Self Advocacy Network.

Theresia Degener, Chairperson of the UN Committee on the Rights of Persons with Disabilities spoke strongly against guardianship, also described as substituted decision making at the event.

“Substituted decision-making is a human rights violation,” said Degener. “It is called protection but it is oppression.”

“Guardianship laws are a harmful traditional legal practice coming from the north and it is now widespread all over the world and it must be repealed.”

2017 marks the 10th anniversary of World Autism Awareness Day.

“It has been 10 years since we joined with others to successfully campaign for a World Autism Awareness Day through the UN General Assembly,” Her Highness Sheikha Moza bint Nasser, Chairperson of Qatar Foundation, told IPS.

“Our aim was to shine a bright light on autism as a growing global health issue,” she said.

“On this 10th anniversary, it is vital that the global community continues to increase awareness and develop knowledge across the world of autism spectrum disorder (ASD).”

“Only by celebrating the unique talents and achievements of persons with autism will we give a voice to the millions of individuals worldwide who are looking for ways to realise their full potential.”

Also speaking at the event, Simon Baron-Cohen, Director of the Autism Research Centre at the University of Cambridge spoke about how people with autism have difficulties with social relationships and communication but also need need respect and acceptance for their differences.

Baron-Cohen described how people with autism report feeling that even those they are close to may take advantage of their social naivety or different communication skills.

Baron-Cohen also emphasised that autism is a reflection of “neurodiversity, that our brains are not all wired the same.”

He also emphasised the potential positive sides of autism.

“Autism Is not a disease in the classical sense because it invariably leads to disability it also often leads to talent for example in excellent attention to detail and excellent ability to spot patterns.”

Baron-Cohen said that it was impossible to separate a discussion about independence and autonomy for people with autism from a discussion of their human rights.

“All people with autism, like all people with a disability, have legal capacity even if they need support to make decisions and need safe-guarding,” said Baron-Cohen.

“Legal capacity and equal recognition before the law are inherent rights that people with autism enjoy on an equal basis with other members of our societies,” said UN Secretary-General Antonio Guterrres in a statement.

“Let us ensure that we make available the necessary accommodations and support persons with autism with access to the support they need and choose so they will be empowered to face the key milestones in every person’s life, such as deciding where and with whom to live, whether to get married and to establish a family, what type of work to pursue and how to manage their personal finances.”

“When they enjoy equal opportunity for self determination and autonomy, people with autism will be empowered to make an even stronger positive impact on our shared future.”

Children's Cultural Program / Town Hall Meeting. Dec 14, 2015. Shilpakala Academy. Organized by Parents Forum for the Differently Able. A short play by nearly 30 children and youth with NDDs. Over 100 parents took part in the meeting asking a whole variety of questions and expressing their concerns related to NDDs.

By Saima Wazed Hossain
DHAKA, Mar 30 2017 (IPS)

Within the last 5 years, thanks to political support and national education, autism awareness in Bangladesh has grown immensely. Due to a lack of funds and resources, providing full comprehensive evidence based services for those in need is not yet possible, but with a continuation of our current progression, it is certainly an attainable goal. Credit for our tremendous success in providing public awareness and understanding of the challenges faced by families with autism is ultimately, thanks to the dedication and resilience of those very families.

Our mission for families began in the 1990s with the implementation of comprehensive disability policies along with the formation of national forums and disability organizations.

Since 2008, World Autism Awareness Day on April 2^nd is recognized and celebrated with a national event in Bangladesh. This event has involved a cultural show performed by PWD’s with our Honorable Prime Minister Sheikh Hasina as the guest of honor. Individuals and organizations were recognized for their work, while getting an opportunity to interact with the Prime Minister to express any concerns.

Despite progression of autism awareness in the population, the real turning point for change in South Asia came with the international conference on autism organized in Dhaka on July 25^th 2011. What differentiated this conference from others in the region was the integration of various individuals from scientific, personal, and political backgrounds. The presence of prominent political figures such as, Mrs. Sonia Gandhi, Prime Minister Sheikh Hasina, as well as many other First Ladies and ministers from the region, allowed our conference to be truly unique.

Saima Wazed Hossain

This event brought about an unprecedented change in the societal attitudes about autism and disability. Since then, previously rejected newspaper articles by parents and experts began to be regularly published in Bangladesh daily papers. Talk show discussions on health matters included the topic of disability. The word ‘autism’, which did not exist in our language has now become a household term, and frequently, if unfortunately, used as a synonym for disability — or as we say in Bangla ‘protibondhi’.

The conference was followed by the formation of 4 task forces comprised of parents and experts in the field. Additionally, I appeared in numerous television interviews where I described autism and shared a personal message to end discrimination and shame. At the recommendation of the task force, a parents’ forum was established followed by the formation of a national steering committee in 2013, comprised of 8 ministries headed by the highest non-elected government officials, which are supported by senior advisors and technical experts. This multi-faceted approach prioritized the need for early screening and intervention, supportive educational programs, employment training, and social safety net programs. This sent an important message to stakeholders and policy makers explaining how there is no easily addressed solution to autism which could be implemented by altering existing medical practices. Instead, a multi sectorial life span approach would be required to create a more cost-effective, sustainable and supportive program catering to families’ needs.

The complexity of autism and other NDD’s pose a significant challenge when trying to balance the development of medical services while creating socioeconomic opportunities for an individual’s unique skillset. The primary task of mitigating the tremendous emotional, social and financial ordeal for families remains a persistent challenge.
The last four years of multi-sectorial planning by the National Steering Committee has enabled the inclusion of disability in the government’s development and economic planning. With significant political support, the primary stakeholders, i.e. individuals with neurodevelopmental disorders (NDD) and their families continue to play a significant role in shaping policies and implementing programs. This involvement of several ministries ensures significant awareness for autism and all disability matters; however, our unique and comprehensive approach is challenged by a limited growth in human resource development and the lack of a mechanism for monitoring the efficacy of projects and fund disbursement to ensure sustainable evidence-based programs particularly in the social sector.

Global awareness and enhanced understanding of autism has resulted in increased diagnosis, demand for treatment and development of innovative approaches; many of which remain isolated to research settings or unpublishable in scientific journals. Additionally, due to the high cost and copyright laws many programs in low resources countries remain similarly isolated and unshared. Moreover, programs requiring linkages between existing infrastructures with inter and intra-disciplinary collaboration are a particular challenge for developing countries. Hence why we urgently need a mechanism by which the challenges and success stories of these individuals can be shared among both disability organizations and governments so it may provide further knowledge on effective, sustainable programs and assist in decision making.

The complexity of autism and other NDD’s pose a significant challenge when trying to balance the development of medical services while creating socioeconomic opportunities for an individual’s unique skillset. The primary task of mitigating the tremendous emotional, social and financial ordeal for families remains a persistent challenge.

This April, Shuchona Foundation with WHO-SEARO is paving the way towards implementation of international resolutions on autism by organizing a conference in Bhutan for the ministries of Health and Family Welfare of Bhutan and Bangladesh. Experts, self-advocates, caregivers and policy makers will meet for 3 days in Thimphu (visit www.ANDD2017.org) to discuss identification and interventions methods, issues on education and employment and help develop a collaborative comprehensive plan for low resource settings that all countries can emulate.

Saima Wazed Hossain is a Specialist in School Psychology, Chairperson of the Bangladesh National Advisory Committee for Autism and Neurodevelopmental Disorders as well as a Member of the World Health Organization’s Expert Advisory Panel on Mental Health.

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By Charity Chimungu Phiri
BLANTYRE, Malawi, Mar 29 2017 (IPS)

When building a house, it’s critical to lay a strong foundation. The same applies to education, with studies showing that children who attend early learning centers perform better in school than those who do not.

In Malawi, a 2003 national survey found that only 18.8 percent of school-age children with disabilities were attending class. More than twice as many of the same age group without disabilities (41.1 percent) attended school. This was mainly attributed to the lack of a disability-friendly environment."Since many children come from poor families, parents are often faced with the dilemma of choosing which child to send to secondary school, bearing in mind that the one with difficulties needs special care." --teacher Miriam Chimtengo

More parents are now sending their young ones to such special preschools, some as little as two years old. This kind of early intervention is especially critical for children with learning disabilities such as autism.

Most autistic children are diagnosed late in Malawi due to the lack of specialist doctors and caregivers, but also failure by their parents, guardians and teachers to recognize that the child has learning difficulties.

James Botolo* lives in one of the suburbs of Blantyre and has a 10-year-old autistic son named Chikondi*.

“For so long, we never could figure out what was wrong with our son. Of course he didn’t like to play with his siblings at home and times he could talk to himself but we never thought it was anything. But what mainly bothered us was that he never did well in school, so we kept moving him from one private school to another. One day I met someone who alerted me that my son could have a learning problem,” he said.

Autistic children often lack socialization skills, are hyperactive, struggle to pay attention and sometimes react to things by crying or hurting themselves.

Chikondi is now in standard two at the St. Pius X Resource Centre, a school for children with physical and developmental disabilities such as cerebral palsy, autism, dyslexia, epilepsy, hearing impairment, and blindness.

Currently in Malawi, there are over 40 resource learning centers for children with various disabilities.

Miriam Chimtengo, 41, is a specialist teacher at St. Pius X, where she teaches a class of about 27 students (16 full time).

Chimtengo, who holds a diploma in Special Needs Education, told IPS that there are major gaps in the social support system for the families of children with learning challenges.

“Even though we’re laying this good foundation for the children, for most of them their education does not go further. The parents bring the children to us here at primary school where they will start noticing the changes, but after the child finishes standard 8, they just keep them at home…so all this work at the grassroots level is not sustained.”

According to Chimtengo, there are limited resources for a child with learning difficulties to further their education.

“Since many children come from poor families, parents are often faced with the dilemma of choosing which child to send to secondary school, bearing in mind that the one with difficulties needs special care, special learning materials, full supervision and assistance, which might be hard to provide,” she said.

“Some parents also believe they can better take care of their child alone at home than at school where they will not be around to protect their child.”

Chimtengo said that those with physical disabilities such as visual impairments, deafness and limited limb mobility are more likely to go further in school than children with mental/emotional issues such as autism.

The other contributing factor is that there are no free services for poor families who wish to send their mentally challenged children to behavioral therapy. Only physiotherapy is free in government hospitals and at SOS Villages.

“For example, here in my class I have children whom upon assessment we recommended that they go for therapy, but only those parents who are financially better off have put up their kids in therapy…we have been lobbying with the government to make links with such specialists so that they are available for all children regardless of their financial standing,”

This scenario automatically puts a child with a learning disability at a disadvantage to later further their education or secure a job.

There are limited spaces offered to youth with disabilities in national vocational training schools in Malawi. They only take in a certain number, which is far below the actual population in need.

In other private vocational training facilities, the prerequisite for entry is a Malawi School Certificate of Education-MSCE (equivalent to a high school diploma), which many children with mental disabilities find hard to earn.

The Living Conditions study of 2013 found that many youths with various disabilities were frustrated with the large gap in the provision of vocational training services, as well as some other services such as welfare, assistive devices and counseling.

In 2015, the government launched a program called Community Technical Colleges aimed at helping poor children, including those with disabilities and lacking high school diplomas, gain access to tertiary education.

International experts on autism advise parents with learning difficulties to take a leading role to ensure that their child secures some form of employment.

The website Autism Speaks says it is important to encourage the child to network at community and family events to meet potential employers.

“Encourage your son or daughter to think about their hopes, dreams, interests and strengths as a way to start planning for employment. One of the most valuable resources for adults with autism is peer support and mentoring.”

The other challenge in educating children with special needs in Malawi is lack of specialists both in the education and health sectors. For the whole of the commercial capital Blantyre, there is only one neurological doctor who sees patients twice a week at the Queen Elizabeth Central Hospital.

There are many special education teachers, but are scattered across the country.

“Literature says that one special needs teacher should attend to five kids. But because of the increase of children, we’re teaching more than that. This is challenging because different disabilities have different needs,” said Chimtengo, the special needs teacher at St Pius X.

“It means in one lesson I should try to capture all the needs of every student, which takes a lot of time and effort. Our colleagues in the normal classes teach a class, but for us we teach individuals who need to be taught the things repetitively. We call it repetition and drilling,” she said.

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By IPS World Desk
Mar 29 2017 (IPS)

On the 2nd of April, to observe World Autism Awareness Day, IPS will be highlighting the issues and plight surrounding the rising global phenomenon of this often misunderstood affliction that is consuming many of the world’s children.

Read IPS coverage of World Autism Awareness Day

By Charmaine Taylor Rietman
OTTAWA, Mar 29 2017 (IPS)

I have two children. A daughter who just turned six and a son who just turned three. My daughter was late to walk. My husband and I were pretty worried about why it was taking so long for her to stop ‘bum scooching’ — her preferred method of movement. I consulted Google on more than one occasion to see if other parents had children doing the same. I felt anxious when I read that 18 months was considered very late. She didn’t start until she was 22 months after a few months of physiotherapy.

My son followed in his sister’s footsteps, but being the second child, we were much more relaxed about his late motor development and repeatedly said, ‘he’ll get there.’ But by the time he was 22 months he wasn’t even close to taking his first steps. His pediatrician referred him to the same physiotherapist who helped accelerate our daughter’s walking. When my son was about to turn two, the physiotherapist, recommended that we get his name on the long waiting list to see a Developmental Pediatrician for a neurological exam because it could take between 6-9 months to get in. If there was an issue, we needed to find out sooner than later.

She also thought he was displaying some signs of Autism.

Autism? What did she mean? I didn’t understand.

He engaged with his peers and his family. He was cuddly and lovable. He reached out to be picked up or held. He made eye contact with us. He smiled when we smiled. He responded to his name and asked for things he wanted. He got upset if his sister was crying or if another child got hurt. He waved and was able to look at things we pointed to. He had a really good, clear command of language early on. He never regressed in any way.

Our seemingly normal child has ASD. His pediatrician doesn’t believe the diagnosis. We had a hard time accepting it ourselves, but it is what it is. It is up to us, as parents, to help guide our children and lead them into the world. The same goes for our son, so he can have a life just like anyone else. Our son is going to be okay.
When I researched the signs of Autism he didn’t display any of them. Except, from a very young age, he would move his arms when he was excited and happy. Like a little bird. We didn’t think anything of it, we thought it was adorable.

When I did the intake for the neurological assessment I mentioned the hand ‘flapping.’ I hadn’t realized it was a flag for Autism Spectrum Disorder (ASD). The wait didn’t take 6-9 months – he was in, in two months.

About a week before the assessment, our son finally took a few steps on his own; he was beginning to cruise. We were thrilled! Then it became time for my husband and I to take him to his assessment. The doctors observed his behaviour and his interactions with us, while he played on the floor. They asked us a lot of questions about my pregnancy and his short life. There was a bit of hand flapping during our meeting. It took about two hours and at the end of the meeting, they sent us away for half an hour. I had a sinking feeling in my stomach: they’re going to think he has Autism. My perfect boy was going to receive the label. I just knew it.

The doctors went over his results. They were pleased he was walking, so there was no issue neurologically, but they wanted to invite him back to be assessed for ASD because he was displaying a few signs. I told them we would do anything for him, but I was aware that the spectrum had broadened and that the medical community loves to label kids.

Five weeks later we returned to the hospital for his test. The week before he was to be seen he finally started to walk on his own. The test, in our minds, seemed skewed to give the doctors the results they wanted. They played with him and it seemed like he was engaging the way a toddler should. After they were done, they sent us away again — the way they did the first visit. When we returned they informed us that we had a very special boy who shared a loving and deep connection with both my husband and myself. They told us that after scoring his results he just made the cut off for being on the ‘spectrum.’

Our son had Autism.

To this day, I don’t know if I can describe how that felt.

After that day, I spent hours and hours researching Autism; trying to make sense of Autism Spectrum Disorder; trying to figure out where he fit on this spectrum. Like most people, when I heard the word Autism, I envisioned a non-verbal child who preferred to be alone, who was disengaged and super quirky.

This was not our son.

We hated that he had been given this label that would instantly cause people to think of ‘Rainman’ or the weird, eccentric kids we all grew up with who were never diagnosed. The ones who never had friends because they didn’t know how to socialize or have normal conversations. The kids who obsessed over things and sometimes rocked back and forth or hummed incessantly.

This was not our son.

It’s been almost a year since he was diagnosed. He attends pre-school and whilst there is a bit of a difference between him and his peers, he’s in it, wholeheartedly. He loves playing with his sister and having play dates. He loves people, his grandparents and dogs. He loves music and laughing and being goofy. He loves watching movies while cuddling on the couch. He could talk your ear off about all six Star Wars movies, Spiderman or diggers and dumpers. He’s picky about foods, but getting more adventurous. He is a toddler through and through, but more often than not, when he does something we wonder, is this a toddler thing to do or is this ASD?

The number of children being diagnosed with ASD continues to rise every day. If there is one thing I have learned in this whole process, it’s that children with Autism Spectrum Disorder need their parents to be their advocates. The spectrum seems so wide and so full of misinterpretation, it is a veritable challenge to navigate. Every child is a unique human being. Yet every child who is diagnosed with ASD falls into an undefineable spectrum and continues to be misunderstood because of the label.

Our seemingly normal child has ASD. His pediatrician doesn’t believe the diagnosis. We had a hard time accepting it ourselves, but it is what it is. It is up to us, as parents, to help guide our children and lead them into the world. The same goes for our son, so he can have a life just like anyone else. Our son is going to be okay. He will be given the tools he needs to make it in this world and my husband and I will be right beside him the entire way.

* The writer is a mother who chose not to disclose her real identity

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