Parenting an autistic child: How to protect caregivers from emotional burnout

Lack of sustained action and greater investment in inclusive policies and services that uphold the rights of autistic people has the immediate effect of leading caregivers into a state of depression.

According to David Maina, the Director of Rafa Institute of Disability Care Studies and an Occupational Therapist Autism is one of the causes of depression in parents, and part of the answer to it is knowledge," he says, opining that education is not supplementary to autism care but the foundation of it.

He notes that the condition offers no quick fix like tablets, injections, or surgery, and that without proper knowledge and support, parents are left navigating an overwhelming journey entirely alone and describes it as ‘having a pain one cannot explain and doesn’t know where to go to relieve it’.

In addition to this, the financial burden on parents with some children requires two to three times a week of therapy (physiotherapy and speech), which can cost anywhere from Sh 500 to 10,000 per session, a burden that is simply unsustainable for most Kenyan families.

Therefore, a caregiver who understands the condition knows the right diet, knows when to seek occupational therapy, and knows how to structure a child's day to manage hyperactivity and build concentration.

“You may have all the love in the world for your child,” he says, “but if you don't know the right foods for that child, you will not see the improvements you hope for.”

He notes that at least one trained person in every household makes a measurable difference not just for the child, but for the mental resilience of the caregiver.

Maina is particularly emphatic about early intervention and says that when a child grows older without having learned basic self-care, the physical and emotional demands on a caregiver become overwhelming.

His call to the education system is that every school that enrolls a child with autism must have trained staff.

“It is wrong for a school to accept a child with autism knowing the teacher has never encountered an autistic child,” he says and opines that a trained teacher can do far more than manage a classroom as they can advise parents on diet, activities, and when to seek professional help, creating a bridge between home and school that currently does not exist for most families.

Pastor Charles Onyango, Lead Pastor at Trinity Chapel, Nakuru, says the church plays a key role in promoting acceptance and reducing stigma.

“The first step is just welcoming these families and telling them it is okay to come with their children,” he says, adding that they have a few trained volunteers to help, especially during services.

And for caregivers specifically, the church has established a support group where they can come for counselling, share their experiences, and carry one another.

“A support group is a first step to help these communities bond, grow, and support one another,” he says.

Pastor Onyango opines that more churches need to open their doors to this conversation, not only on designated awareness days but consistently, noting that virtually every congregation has at least one family raising a child with autism, and what matters is that the conversation is being pushed forward.