Behind every autistic child is a family. Behind every undiagnosed and unassisted autistic child, is a family on the brink of disintegration. “We cannot go out as a family at all. Ever.” This is a normal statement for a family of an unassisted autistic child. The embarrassment, the chaos, the meltdowns and the bizarre behaviour that ensues is simply not worth the effort. “We cannot leave him with anyone else, so my husband and I now take turns leaving the house,” is the common solution.
1 out of every 88 people is born with autism. It affects boys more than it affects girls. None of us need to look far before we can think of a relative or a child of a friend who exhibits extremely strange social behaviour that leaves those of us who are “normal” squirming with discomfort: Children who don’t know how to respond to a smile. Children who place their own faces 3 inches away from your nose and don’t pull away when you do, but only come closer. Children who scream if you touch them. Children who spend days rocking themselves, instead of playing in the playground. Children who have to spend hours in darkened “cool down” areas to control their meltdowns. Children who don’t curiously or obediently come to greet you when you arrive at a home, but simply stand, staring into a corner.
Behind every family that has an autistic child is a community that normally does not understand or support either the child or the family. The nature of the disability drives the family into isolation.
Autism cannot be cured. But autism can be managed. Managing autism is about taking children who exhibit this bizarre social behaviour, and giving them interventions to make them less bizarre. This in turn makes their families less bizarre, and integrates both the child and the family back into the community.
The Johannesburg Hospital School has been specialising in implementing programmes for managing autism since 2002. We are the ONLY Government school in Johannesburg that provides autism specific schooling. All other state schools cater for mixed disabilities and autistic children are frequently denied entry into these schools because of the severity of the condition. Typically high school autistic children just drop out of mixed disability schools and end up staying at home out of sight. Without our school these children would not get their right to an education.
In terms of our teaching methods we follow the TEACCH approach. The primary aim of the TEACCH programme is to help to prepare people with autism to live or work more effectively at home, at school and in the community. Special emphasis is placed on helping people with autism and their families live together more effectively by reducing or removing 'autistic behaviours'.
The TEACCH concept
The principles and concepts guiding the TEACCH system are:
• Improved adaptation: through the two strategies of improving skills by means of education and of modifying the environment to accommodate deficits.
• Parent collaboration: parents work with professionals as co-therapists for their children so that techniques can be continued at home.
• Assessment for individualised treatment: unique educational programmes are designed for all individuals on the basis of regular assessments of abilities.
• Structured teaching: it has been found that children with autism benefit more from a structured educational environment than from free approaches.
• Skill enhancement: assessment identifies emerging skills and work then focuses upon these. (This approach is also applied to staff and parent training.)
Cognitive and behaviour therapy: educational procedures are guided by theories of cognition and behaviour suggesting that difficult behaviour may result from underlying problems in perception and understanding.
• Generalist training: professionals in the TEACCH system are trained as generalists who understand the whole child, and do not specialise as psychologists, speech therapists etc.
We are immensely proud of what we have achieved at our school in the past 10 years:
• We have changed the lives of over 192 children, and in turn over 192 families.
• We have become such specialists in our field to the degree that our staff work (voluntarily) one Saturday of every month at Autism South Africa Clinic to assist with screening for autism and at the Neuro-Developmental clinic in Charlotte Maxeke Johannesburg Academic hospital (CMJAH).
• We teach vocational skills to our senior learners so that they will achieve a degree of independence once they leave. This includes car washing and catering.
• People come from all over South Africa to see what we do and how we do it.
• We are well networked with VERA (Western Cape), UNIKA (Pretoria) and ASA (Autism South Africa). Maggie Golding, an autism specialist who works with these organisations comes to our school once a term to audit and train our teachers further.
• We provide practical teaching for the speech therapy Students from Wits which also means that our learners get individual and group speech therapy on an ongoing basis.
• We have an income generating programme where our learners do arts and crafts projects for markets. This not only teaches them the fine motor co-ordination skills that they need to develop, but it also brings in money to our organisation and integrates our programmes into communities.
• Situated in the Children’s Memorial Institute building in Braamfontein, we are neighbours to 30 other NPOs. This provides a fantastic opportunity for us to develop a tea garden and a tuckshop – projects that will also be income generating and which are currently developing.
Joshua, has been at our school for 4 years. His father says about him:
“When he first came to the school Joshua could not talk, he could not bath himself... there were so many things. Since being at the school he has changed so much. I can now hold a meaningful conversation with him. He can use the bathroom by himself. The school transformed a child who I thought would never amount to anything, and it has given me some hope for him.”
And from another father:
“My son was diagnosed with autism as well as ADHD. I did not know how to handle him. After he started at the school I attended the parent/teacher meetings. The school has not just been useful in terms of changing my son. The school changed me as well... My child can now understand English. He can understand the local languages. And most importantly, he can follow instructions... I have some neighbours who also now understand autism, and their children even come to our home and call my son to come and play with them... In terms of my relatives, they are all now more relaxed with my son. In the beginning they thought he was insane, and they avoided him. But since he attended the school they have seen a change in him, and now that he is more relaxed and attentive, they have also relaxed and the relationship is better... To say that the school has been helpful is an understatement. It has been a blessing.”