Why social networks are key for parents with autistic children

"He would refuse to eat food and when you insisted, he would chew and spit it out. Because of this, he lost a lot of weight and when I took him to hospital, doctors noticed quickly that he was autistic. His diagnosis was a big blow," Maria Nakitende recalls. 

Maria cried for several weeks because she did not know what kind of life her son was going to live. She was advised to give him softer foods and porridge but there are times when he would refuse to eat the porridge.

She was in and out of hospital that she had to quit her job because all the house-helps she found could not stay.

"He would not settle in one place. He would climb everywhere and tiptoed while walking. My neighbours would judge me, saying I had raised an ill-mannered child. Many would tell their children not to play with mine. I was lost and since I was a first time mother, I did not know who to go to for help," she says. 

Fortunately, she had a supportive husband and when they opened up to a friend, she told them about Dr Prossy Nakanwagi's WhatsApp group, which they joined.

Maria's husband Enoch says, "We joined as a couple and immediately, we realised we were part of a big family. Much as we were hurting, it was comforting to know that there are other people who have the same challenges. They share advice and it helps a lot."

Through the group, Maria found a nutritionist who helped her draw meal plans for her three-year-old son and with the change in diet, her child is no longer hyper and the tiptoeing is reducing. 

"The hyperactivity is now under control. Although his speech is not fully developed, I am glad he is a bit social now and even goes to school. We take one step at a time and celebrate each milestone," Enoch says.

Prevalence

About 75 million people of the world's population have autism spectrum disorder.  That is, one in 100 children have been diagnosed with autism spectrum disorder as of 2021, but autism prevalence has increased to 178 percent since 2000.

Dr Nakanwagi, a public health specialist, started the Advancing Autism Family Support Group to help families of children diagnosed with Autism Spectrum Disorder (ASD). Started as a WhatsApp group, the platform now has more than 200 families and is registered as a company. Here, they not only share the challenges they face but also milestones. They also meet once in a while to share and empower persons living with autism, with the oldest in the group being 30.

Dr Nakanwagi’s dream is to build a centre for the children since the existing schools and therapies do not address their needs. In places where such needs could be addressed, the cost is very high. 

“With the right affordable therapy, our children can thrive,” she says.

A disability?

Although ASD is often classified as a mental disability, Dr Nakanwagi says this is a misrepresentation. She says disability is instead in the failure to recognise emotions and the environment.

“The current school curriculum leaves children with autism out and when they grow, they become dependent adults who cannot sustain themselves. The educators are not equipped to teach or transfer knowledge to children with autism yet in order for them to achieve their full potential, they must be helped even in the schools they attend,” she says.

“We also hope to train house helps who will be able to help children with autism thrive since many usually run away since they do not know how to deal with or even help the child,” she says.  

Challenges

Diagnosis of ASD does not always come easy since it does not have a particular face, unless the child has other comorbidities. Most of the time, it takes a long time for a child to be diagnosed and when this is done, there is no referral since ASD has no cure. At this point, many parents are stuck and do not know what to do.

Dr Nakanwagi says after a comparison with her other children, she realised her son was delaying to hit some milestones and suspected he had a problem. However, several doctors said her expectations were just too high.

“We know there are simpler tests and diagnostic tools that could be used but many times, clinicians a Magnetic resonance imaging (MRI), is a noninvasive medical imaging test that produces detailed images of almost every internal structure in the human body, including the organs, bones, muscles and blood vessels. However, for many parents, this test is very expensive,” she says.

She adds that when a parent is lucky to get a diagnosis, they are not given any referrals or told what to do next. Many may not know any parent with an autistic child. It is shocking and causes distress to the family knowing that the disorder is a lifetime challenge. It takes time to cope with the diagnosis.

In most cases, many parents do not know where to go for the different therapies that could help their child and although Mulago National Referral Hospital has an occupational therapy department, it is already overburdened, serving several other disabilities. 

“You can be on the waiting list for a long time before your child gets assessed for the necessary therapies they need. In most cases, many parents have to resort to private practitioners who are not affordable,” Dr Nakanwagi says.

There are schools that are intended to cater for the needs of children with autism and other special needs but if the child has severe autism, they will copy all sorts of mannerisms they see since they cannot filter what is right or wrong.

Friends and family reactions and many times an autism diagnosis can wreck a marriage and usually, fathers walk away on the special needs child because they cannot cope. In the group, Dr Nakanwagi says, there are many single mothers who have been abandoned by men who deny being the fathers to disabled children.

Why join a group 

Dr Prossy Nakanwagi urges parents with special needs children to join a support group since as human beings, we are social beings. Usually, when you realise there are several other people who have the same challenge, you understand that you are not alone.

“Emotional and psychological challenges are a common occurrence for parents of children with special needs and many times, parents want to share their challenges and frustrations with someone who will listen and give a word of encouragement,” she says.

You will always be able to get referrals where to take your child when you need to see a doctor. We work with health care providers who also have children with autism and they understand the children very well. Experience is the best teacher so the parents in the group are masters of information.