Today, April 2, is World Autism Day. The day is used to raise awareness about people with Autism Spectrum Disorder (ASD) throughout the world. It was designated by the United Nations General Assembly in ….

The UN Secretary-General António Guterres called upon the world to speak out against discrimination, celebrate the diversity of our global community and strengthen our commitment to the full inclusion and participation of people with autism. He called upon governments to supporting children with and programs of autism with the necessary tools to exercise their rights and fundamental freedoms."

In Uganda, Save Children With Autism Uganda (SCWA) is an NGO registered to promote awareness about Autism Spectrum Disorder (ASD), sensitization and mobilization of communities and counselling parents of children living with ASD.

According to National Drug Authority (NDA), one in 160 children has an autism spectrum disorder. It often appears in early childhood and may continue beyond puberty. And the most important symptoms of autism are no response to one’s names, delayed speech, and repeating some movements and words.

SCWA says the level of autism awareness is pathetically low in Uganda.

 “Government does not recognize autism as an independent disability. As a result, there is no government funding for educational and specialized services for autistic children in mainstream schools. This places the financial burden of autism entirely on parents,” their statement read.

A statement from Entebbe Action on Autism Organization, a community-based organization that advocates for autistic persons, says it is concentrating on educating the community about autism. It carries out activities aimed at reducing the dehumanization and stigmatization of autistic persons.

“We attempt to influence functional, inclusive service delivery by advocating for the involvement of autistic persons in development and empowerment programs. We monitor and advocate for the implementation of policy benefitting individuals with autism. We advocate for functional, inclusive education at all levels,” it said.

Rose Nalukenge, the Chairperson, Fundraising Committee, Entebbe Action on Autism Organization, says they encourage and support self-advocacy among autistic persons and parents of autistic children by building their capacity to become self-advocates within their community settings.

“We strive to support parents of children with ASD financially through income-generating projects. We know that parental well-being, particularly maternal well-being, can greatly influence the well-being of children. Most of the parents that we work with are single mothers.

We offer counselling services to autistic persons, to parents of children with spectrum disorders, and to autistic married couples or those in relationships that involve an autistic person. Our goal is to keep couples together as much as possible and to highlight the benefits of staying together, such as two-person income potential and reduced stress, amongst other things,” she said.

Last year, Children petitioned the Speaker of Parliament, Rebecca Kadaga on budgetary allocations to facilitate their mandate. They were taken to meet her by the director, New Life Foundation, Susan Kwizera. She explained that the 1% budget allocation to the Special Needs and Inclusive Education department denies children with autism access to specialised education. 

“This means a large number of children with autism remain illiterate and unskilled,” she said.

The MP for people with disabilities (Eastern), Hellen Grace Asamo castigated a policy of putting children with autism with others in the education system.

“Government has failed to pass the policy on special needs which she said has been in the Ministry of Education for over 15 years. The policy had even reached the cabinet and all stakeholders had been consulted. There are now fears that we will be asked to start the policy formulation process afresh which means we shall take 30 years making a policy,” Asamo said.

What is Autism?

Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Parents often notice signs during the first three years of their child's life.

Autism is associated with a combination of genetic and environmental factors. It may be caused by infections during pregnancy of such diseases as rubella, excessive consumption of alcohol, drugs or polluted air, foetal growth restriction, and autoimmune diseases.

Autism affects information processing in the brain and how nerve cells and their synapses connect and organize.

Globally, autism is estimated to affect 24.8 million people as of 2015. In the developed countries, about 1.5% of children are diagnosed with ASD as of 2017. It occurs four-to-five times more often in males than females.

Dr Sagar Sharma is a Consultant - Neonatologist and Paediatrician at Columbia Asia Hospital, Who is an expert on Autistic children, wrote this advice for parents:

How to tell if your child is autistic

Below 1 year

• Avoids eye contact
• No facial expression or inappropriate expression
• Doesn't respond to your smile
• Doesn't look at objects which you show
• May not respond to sound
• Sticks to specific toys
• Difficult to comfort and soothe the child

1-2 years of age

• Kids being in its own imaginary world
• Delay in speech
• Doesn't respond when called by name
• Doesn't respond to questions appropriately
• Extra sensitive to loud sounds, unusual smells
• Unresponsive to people
• Repetitive behaviour like taping body parts, repeat words or noises

Over the age of 2 years

• Prefers to play alone
• The child will not share things with others
• Difficulty in expressing his/her feelings
• Does not make friends and share things
• Hardly uses gestures or displays appropriate body language
• Tone of their speech can be either low pitched or high pitched
• Sensitive to infections and can fall sick frequently

Treatment and support:

There are many treatments that can help children acquire new skills and overcome a wide variety of developmental challenges.

Have a fixed schedule as autistic children tend to do best when they have a structured schedule. Be it for meals, therapy, school, playtime and bedtime, set up a schedule and try to minimize disruptions.

Reward your child for their good behaviour. Never miss an opportunity to identify your child's talent like learning a new skill or responding to your questions.

Look for non-verbal cues like the sounds they make, their gestures and facial expressions etc. Use these cues to understand what they want or willing to communicate.

Parents should learn new ways to make their child happy and spare time for a fun activity with them. Playing is a crucial part of learning.

Parents are advised to join autism support groups to share their feelings, get information and the desired emotional support when needed.

Behaviour therapy, speech-language therapy, play-based therapy, physical therapy and nutritional therapy are common autism treatments. However, what parents need to keep in mind is that their participation is crucial to the success of every care plan.