April has been designated internationally as Autism awareness month. April 2 annually is Autism awareness day. Nigeria joined other countries this year to mark the day through various activities including walks, cycling and road shows.
From Lagos, Abuja to Port Harcourt, many stakeholders and individuals living with autism created massive awareness campaigns.
Autism Spectrum Disorders (autism for short) are a group of disorders that have to do with brain development in childhood. The disorders are a spectrum, which means they range from mild to severe.
The incidence of autism appears to be increasing worldwide. In the United States of America, one out of 68 children has autism. Many children in Nigeria believed to be suffering from “spiritual attacks”, “demonic affliction” “witchcraft” due to superstitious beliefs are now being diagnosed with autism.
We really do not know the cause of autism but research shows a link between inheritance and some environmental factors as one of the likely causes.
Individuals with autism have challenges in two major areas: communication and social interactions. Parents and teachers often first notice the signs. The symptoms do not have to be the same in individuals who have autism. Communication difficulties manifest as delay in talking, or sudden stop/regression in speech and difficulty with sustaining back and forth conversations. The restrictive/repetitive behaviours may include repeating certain unusual behaviours; having overly focused interests, such as with moving objects or parts of objects; having intense interest in certain topics, such as numbers, details, or facts.
Social communication and interaction behaviours may include getting upset by a slight change in a routine; making little or inconsistent eye contact, and rarely sharing enjoyment of objects or activities by pointing or showing things to others.
Responding in an unusual way when others show anger, distress, or affection; failing to, or being slow to, responding to someone calling their name; repeating words or phrases that they hear (echolalia); using words that seem odd are some other behaviours.
Others are having facial expressions, movements, and gestures that do not match what is being said; and having an unusual tone of voice that may sound sing-song or flat and robot-like. This list of symptoms here are by no means exhaustive.
People with autism may have other difficulties, such as being very sensitive to light, noise, clothing, or temperature. They may also experience sleep problems, digestion problems, and irritability. However, autism is unique in that it is common for people with the condition to have unusual strength and ability.
Strength and ability may include having above-average intelligence; being able to learn things in detail, remembering information for long periods of time, being strong visual and auditory learners and excelling in math, science, music, or art.
The diagnosis of autism can be through detailed assessments by developmental paediatricians, child neurologists, psychologists and psychiatrists. There are no curative medicines for autism but its treatment can be with therapies which research has proved to be effective based. Such therapies include behaviour therapies, speech and occupational therapies. With early and consistent evidence-based therapies, people with autism can overcome their challenges. Though there are also many alternative and complementary therapies, there are no scientific studies backing them.
The main difficulty that many families have in Nigeria is accessing therapy. There are a few dedicated autism centres and schools with many of the privately-owned ones only in the cities. Additionally, there is a serious lack of formally trained therapists. The cost of therapies can also be overwhelming even when it is available. Options for scenarios with no therapists include training of parents/teachers in evidence-based behaviour therapies to do “Do-It-Yourself.”
An example is the training programme in AIMS (Behavioural therapy) approach for parents, teachers, and therapists, which is coming up on April 22 and23. A South African-based Intervention Centre, KidStart Plus, is organising experienced therapists to train participants on how to do home-based therapy with individuals living with autism. There are also online therapy platforms like Rethink Autism though the cost and access to Internet may be a limiting factor.
There is also the need for stronger advocacy to make therapies readily available and affordable to affected families. Autism can be challenging but with determination and access to therapies, the individuals with autism can overcome. Many individuals with autism in recent years now go to colleges and have meaningful relationships. The key is early diagnosis and evidence-based therapies/interventions. We can all be a voice for children living with autism.
A Consultant Neuro-Developmental Paediatrician at the Lagos University Teaching Hospital, Idi-Araba, Dr. Gbemisola Boyede, wrote the piece. You can forward comments, questions and clarifications to her via e-mail: email@example.com. You can also follow her on www.facebook.com/groups/askthepaed.