“He will probably never speak …”
Those five words seemed to penetrate my heart and linger there like a growing infection that instantly affects a paralysing pain throughout the whole body. They were spoken in a matter-of-fact manner by a doctor almost 12 years ago, as part of a long explanation around our son Daniel’s diagnosis. I still remember the words clearly, but also the words God had given me the night before, that were in that moment (and have continued to be) a healing balm to my body and soul. “To humans belong the plans of the heart, but from the Lord comes the reply of the tongue” (Proverbs 16:1).
Due to limited resources in the public sector, we had been on a waiting list for almost two years before we were called by the hospital for an ADOS assessment conducted by a specialised medical team. By ADOS, I mean an Autism Diagnostic Observation Schedule assessment, which is used to evaluate children with suspected Autism Spectrum Disorder (ASD), or what is now preferably referred to as Autism Spectrum Condition (ASC).
Until this moment, various medical reasons had been offered by different medical professionals to justify why Daniel was still non-verbal at age six. However, now the explanation provided by the head of the ADOS assessment team confirmed that our child was indeed part of the estimated 1.2 million South Africans who have been diagnosed with autism.
Autism affects brain development but is not referred to as a “spectrum” for nothing—while there are common characteristics, no individual on the spectrum is the same, as they all exhibit these characteristics differently and with varying degrees of severity that demand higher or lower support. Sometimes, the characteristics are called a “triad of impairments”, as autism mainly affects three common areas: communication, social interaction, and restricted and/or repetitive behaviours and/or interests.
The World Health Organisation estimates that about one in 100 children globally have ASC, which is four times more common among boys than among girls. Although early detection and intervention are vital, this number does not include many adults living with undiagnosed autism. It is suspected that in South Africa, statistics are underestimated mainly due to a lack of access to diagnostic assessment and the stigma attached to autism. Experts in the field agree that autism in our country is on the increase, as is the need for more awareness campaigns, as well as access to affordable neurodevelopmental hospital services and special needs educational opportunities. Hence, 2nd April was designated as World Autism Day in 2007 to promote the human rights of people with autism and ensure their equal participation in society.
During Daniel’s assessment process, we received a change of appointment from the Western Cape Division to THQ in Johannesburg, where God provided us with a contact that became our family’s support base for many years—the Ernie Els Centre for Autism (EEC). Here, my husband and I received parent training and guidance on interventions such as Rethink Autism and participated in awareness and fundraising initiatives—even Samuel (Daniel’s older brother) became one of their “STARS”, an acronym for “Siblings That Are Really Special”.
When Daniel’s Grade R teacher asked us to “keep him at home” rather than send him to school, we embraced the EEC philosophy wholeheartedly, as it was founded on the belief that every child with autism could learn and deserved access to effective education. Furthermore, they recognised that every family member played an important role in helping their child reach their fullest potential. Working together in this supportive environment, God began to fulfil the promise He gave me—to bring about Daniel’s “reply of the tongue”.
There is a great need for increased awareness and acceptance of autism in South Africa, as many people have misconceptions about the condition, making it even more difficult for members of the autism community to feel supported and valued in society. Dr Sibongile Mbatha, head of the neurodevelopmental clinic at Chris Hani Baragwanath Academic Hospital, says: “Most families have inadequate knowledge of autism and the symptoms it presents with.” The clinic sees about 3,000 patients a year, of whom about 1,050 have ASC as a primary diagnosis, and only 30% of families have any idea about autism at their first consultation. As a result, stigmatisation remains one of the top challenges (among others) experienced by parents/guardians raising children on the spectrum. Ignorance and misconceptions continue to contribute to the lack of belonging, misunderstanding, and isolation that describe their reality.
The philosophy of providing acceptance, understanding, and support should not be alien to the Church, as it was initiated by the head of the Church—Jesus Christ. Throughout Scripture, Jesus condemns indifference towards the last, the least, and the lost. Recently, I was reading and studying Jesus’ teaching in Matthew 25:31-46, where the righteous demonstrated different acts of kindness without realising they were actually ministering to Jesus, as verse 40 reveals: “…whatever you did for one of the least of these brothers and sisters of mine, you did for me.”
However, it was verse 35 that caught my attention: “I was a stranger and you invited me in.” The word “stranger” is the original Greek word “xenos”, which can be translated as someone who is “a stranger to a thing”, “ignorant of a thing”, “unusual”, or “lost”. This is actually quite a good description of a neurodiverse person navigating a world that is predominantly focused on neurotypical people—this can be both overwhelming and daunting! While autism causes the neurodiverse to perceive and process the world in unique ways, these ways are unusual, strange, or foreign to others; yet this very condition qualifies them to be invited “in” and should not be used as an excuse to leave them “out”. The invitation is a call “to belong”, to be “included”, and not to remain an “outsider”, but to be a valued and accepted part of God’s family, part of the Church, and part of the world in which they live. The original Greek word for “invited” is “eisphore”, which means “to bring in”, “to carry in”, or “to bring together”. It sounds a lot like unity in diversity to me—another one of God’s great ideas.
Currently, we are navigating a new season of adulthood with Daniel, as he is due to complete his ASDAN school programme next year—education that focuses on engaging, elevating, and empowering learners (aged 11-25) with diverse needs. His school t-shirt has this phrase on the back of it:
“RIGHT WHERE WE BELONG.”
Could the same be said of your community, your corps/church, your friendship circles? A popular quote makes the point that inclusion indicates a much deeper level of unity than simply diversity:
“Diversity is being invited to the party; inclusion is being asked to dance.”
It is not just ensuring that the neurodiverse are represented, but that they are integrated into society and church life, through opportunities to participate, contribute, and serve in meaningful ways.
To commemorate this month of autism awareness, I conclude with a challenge for every reader:
Who do you know in your neighbourhood/corps with autism? What invitation will you offer to him/her towards inclusivity? What practical support are you able to offer to his/her family? Are there new facts about autism you could learn from them? What will you do with the information you have discovered?
I am touched by Major Colleen Huke’s story because I have a 16 year old grandson who was diagnosed with autism. He is doing grade 10 now in a home schooling, he is doing well at school. he can socialize now he has friends, somebody who doesn’t know him won’t notice anything. Because we and the family know we thank God for all what he has achieved so far. His name is Uzisulonwabo (Brought joy). Thank you