“Once upon a time, people would ask me what I did wrong while I was pregnant, and I would be questioned and faulted for having an autistic child. There is a lot more awareness now, and there are disabled seats on buses for people like my son.”
Shanti, who is the mother of 20 year old Tirtho, shared her experiences at the Apon Anonde Aaki art camp organised by Institute of Paediatric Neurodisorder and Autism (IPNA) on the premises of Bangabandhu Sheikh Mujib Medical University (BSMMU) to mark World Autism Awareness Day 2017. Around 70 autistic children and their guardians attended the event – part of a nationwide programme to celebrate the day and raise awareness on autism.
Many steps forward
Bangladesh has come a long way in terms of autism awareness, and this is the first of many events and national public messages spearheaded by the Institute, including one that encouraged parents to write about their personal stories to share with a wider audience.
“We think it's really important to ensure that the voices of children with autism and neurodevelopmental disorders and their families are represented and their needs are met in a caring environment,” said IPNA director Prof Shaheen Akhter.
“Other than providing the necessary medical and psychosocial services under one roof, a core part of our work also focuses on training not only doctors and students, but teachers, therapists and parents, to help create a more inclusive environment for these children.”
Present at the event, Joe Hyungue, Country Director of Korea International Cooperation Agency (KOICA), spoke about partnering with IPNA and training therapists and doctors in Korea.
“This month, there will be an international conference on autism in Bhutan, initiated by the Bangladesh government – which just goes to show the level of progress.”
What do the parents think?
Pronoti's 6 year old son Orko was moved to the IPNA school from a mainstream one, but has now improved enough to attend a normal one on some evenings.
“He has less problems with his speech now and is able to interact with other children, which makes me very happy,” shared Pronoti.
Ishita has two little girls – Ankita goes to a normal school, but Abrita is at IPNA's one.
“Abrita can't speak that well yet, but she's very aware and has her own likes and dislikes. We go to a lot of places, and sometimes people bluntly ask what's wrong with her, but attitudes have changed a lot more now, and these children's problems are being recognised.”
However, while 14 year old Hirak is doing relatively well at school, Hamida worries about other children being mean to her son or poking fun at him.
“Their guardians don't teach them any better. There is a lot of awareness-raising now, but we need to do more to reach parents who don't have special children.”
Worries of what the future holds
Shanti's son is still in school but much older now, and it is starting to become difficult to manage him.
“Loud sounds get to him and he can often get excited out of the blue. Say he gets angry and slaps someone on the street. These things do happen, and I have to beg for forgiveness, and even then people can be unkind. But what can I do? I don't want to lock him up in his room.”
She also spoke of how he can attract negative attention for sitting in the disabled seat on buses, since it is right next to the women's seats.
“People don't want a grown boy to sit right next to them sometimes. It is still difficult to navigate public spaces. That is why I urge all parents to stop confining their special children and take them out more. People need to know they are a part of society too.”
Shahan, father of Orin and Adil, both of whom have neurodevelopmental disorders, echoed Shanti's worries.
“I always worry about their safety, especially when crossing the roads. My daughter goes to a mainstream school and honestly I am constantly terrified. She is young and pretty – say someone gives her something and asks her to go with him? She does not have the ability to assess the potential dangers in this situation. I have no way to guarantee her safety and in our society, it scares me.”
While Shahan spoke positively of the support special children are getting, he worries about what will happen next.
“The only thing I want Adil is to be able to do his daily activities on his own without my help. It seems very simple, but eating right, sleeping right, going to the washroom alone – these worries are constantly on the minds of parents like us.”
Words from them
“I drew the National Memorial this year, but I like drawing the Shaheed Minar too. Red is one of my favourite colours, so next year I will draw a picture of Pohela Boishakh, with lots of colours and flowers.”
- Tirtho, 20
“I like using lots of different colours, and so does my friend Sumaya next to me. Natural things are my favourite – and I love drawing lots of fish.”
- Srishma, 16
On World Autism Awareness Day 2017, IPNA received a national award, handed over by PM Sheikh Hasina
for their outstanding work in the field.