Autistic in Uganda: families persevere amid stigma, lack of services

Occupational Therapist Dr. Hope Igadira plays with an autistic child on a swing in Kampala. (CGTN Africa)

As the world marks International Autism Day, there’s increased focus on ensuring inclusive and equitable education for people living with this condition in Uganda.

But campaigners are concerned about the limited special needs services to support autism patients and extremely low awareness of the disorder.  According to the Uganda Bureau of Statistics 70 in every 10,000 Ugandans suffers from autism but it’s believed the number could be much higher.

Dr Prossy Nakanwagy started autism awareness campaigns after she discovered her son had autism.

Occupational Therapist Dr. Hope Igadira helps an autistic child to comb his hair. (CGTN Africa)

Nakanwagy first noticed something unusual when her son when he was 7 months old. He was not looking directly in her eyes while breastfeeding. But she brushed it off.  But more signs kept popping up. He was also starting talking later than other children.

“One of the other things was sleep, the baby could go 24 hours without sleep. Now from hindsight, that tells you there was a problem. It was at two and a half years when a neighbor came with an occupational therapist and he was like, clearly there’s a problem.”

She had to take her son to a special needs school in Nairobi, Kenya.

Though there are special needs schools in Uganda, the country doesn’t have public schools designed to specifically manage children with autism. They are instead placed  with children with other special needs.

The private schools available are few and costly.

In Nairobi, Nakanwagy’s son was able to catch up with intensive therapy and can now speak. He’s also more independent and is able to comprehend a lot of things. Nananwgy’s biggest challenge now is the stigma her family faces in the community.

“You visit and because he’s not able to follow instructions, he’s all over. People are supposed to sit down, he’s jumping. You’re at a party, it’s not yet time to eat cake, he’s poked it. So imagine, some people will be like, ‘Ok, if you’re coming for the party, do you mind leaving Mathew behind?’ But as a family, we decided that wherever we went, our child was there.”

Autism is an incurable neurological disorder with different levels of severity. Symptoms range from a lack of speech to repetitive behaviors and constant movement, to trouble interpreting what others feel.

The symptoms are managed through speech, play and concentration therapy.

Very little is known about autism in Uganda. Hope Igadira who works as an occupational therapist in Dawn Children’s school in Kampala. She said many parents live in denial and often seek out traditional medicine, only to worsen the condition of their children.

“We’ve seen many parents who have come and are in denial…they don’t know what is the problem with the kid. The parent just says, ‘This kid is stubborn. When I try calling him, he doesn’t respond, this kid is not performing well in class.’ And after telling him these are signs of autism, it’s likely your child has autism.”

There are also few special needs trainers in the country. Igadira is the only therapist at Dawn Children’s school where she takes care of over 60 autistic children.

So far there is no policy that provides for inclusive education for special needs in Uganda. The country is just developing a streamlined policy that will cater to all forms of special needs before it’s presented to parliament for debate and final passing into law but it’s unclear when this law will eventually be passed.