Monday next week will mark the end of the autism awareness month. Over the period, parents and caregivers dealing with children on the autism spectrum have participated in various activities aimed at sharing knowledge and experiences in managing the “epidemic”.
Still, the world has not even started understanding what parents with autistic children go through daily. A couple of years ago, we went for an autism assessment session for our eight-year-old autistic boy, which was organised by the National Council for People with Disabilities (NCPWD).
The event, held at one of the primary schools in Nairobi with a long history of dealing with autistic children, was aimed at certifying those with the condition.
This enables them to get a NCPWD card that has potential benefits. The panel comprised mainly NCPWD staff, and a couple of special education teachers who have specialised in autism. It seemed a relief from the hassle of going to our insufferable public hospitals for the exercise.
However, we did not follow up immediately on the card. In my mind, I thought that the paperwork would be kept somewhere safe, may be even digitised, to be retrieved at short notice.
So recently I went to the NCPWD headquarters in Westlands, Nairobi to finish up the process and, hopefully, get the card. But alas! I met the relevant office teeming with young staff and interns who had no clue about what I was talking about. Their negative attitude towards my enquiries made matters worse.
To them, what they were doing was just a job like any other. Frustrated, I went to the offices at Nyayo House but the staff there, though experienced, said they had no records or recall of their own assessment exercise. Acknowledging the incompetence of their neophyte colleagues in Westlands, they advised that we undergo the initial exercise all over again.
Only a parent who has done this can understand the trauma. Then there are the horror stories from service providers, from doctors to schools purporting to offer autism support. Indeed, almost all parents with autistic children in Kenya have a sob story.
For instance, many have no kind words for the paediatrics they have consulted, especially during the early years when they had no clue about the symptoms of autism.
They say majority of medical doctors are outright rude, totally ignorant and arrogant to their concerns. Many doctors seek the easy way out by prescribing medication that is actually meant for mental cases. These medicines aggravate autism symptoms and even create problems that are not autism related.
The question begs, do they really teach autism in medical school? In come self-styled nutritionists and therapists of all shades. This is where it all goes down. Today there are a myriad dietary and food supplements protocols targeting autistic children targeting healing a children’s gut, and repairing sensorial brain damage.
There are many parents who have gone full circle in this area, trying every new-fangled regimen that comes along. Unfortunately, there are a few success stories; the gains in the children’s quality of life are only alleged at best. Then there is the big one; Stem Cell Therapy (SCT).
In the last couple of years, hundreds of Africans, especially Kenyans, have been trooping for the magical SCT in India at the now famous NeuroGen Hospital in Mumbai.
Many are those who have raised the initial Sh1 million through thick and thin, but have little to celebrate about after the high hopes of a radical transformation of their children towards normalcy.
Generally, let me say that our autistic children have become guinea pigs. Medical science is really overrated if thus far it has been unable to identify, with fair accuracy, the causes of autism, or sure-fire ways of managing the condition.
It is really a minefield in the autism world. The sooner we get an effective cure for it, the better it will be for the growing number of desperate cases. The writer is the Executive Director, Centre for Climate Change Awareness—[email protected]