By Tania du Toit
Autism as a diagnosed, congenital condition has been with us for about 75 years and still it remains a complex matter to satisfactorily guide a young child with autism. This article will not focus on teachers, therapists or qualified service providers, but on those who raise the young person and accompany him or her through life when everybody with book or classroom knowledge go home at night.
The parent and/or carer of a young autist knows very well that whoever walks the road with such a child must be made up of patience and dedication ─ a person who is prepared to intrepidly dig for answers and to selflessly wait for that elusory flash of insight. Book learning and research serve a purpose but have little value without a disposition of lifelong fidelity towards the young autist. Undedicated, uninformed helpers cause great damage.
One irreplaceable requirement for effective facilitation, besides the above, is continuity. Knowing the young autist’s history and walking the road with him or her at all times are non-negotiable. Balancing trust on both sides gets the best out of any young autist. And it is precisely this that complicates being the best carer when you come in from outside because inevitably you do not know the young child.
This could undermine your efforts to facilitate the child optimally.
In helping with schoolwork, you can use the best training methods available, but if you are not familiar with the pattern according to which the young person interprets communication and behaviour, the child will probably see you as an enemy. That is, if you hopefully want to progress with schoolwork and schooling (some people only want to keep the child busy).
Quite a mouthful. Observant, empathetic parents and those around a young autist do have the widest spectrum of behavioural information, as well as tolerance and dedication: by implication, extraordinary insight and knowledge for which there is an immeasurable demand in the labour market.
Most autists progress optimally through one-on-one facilitation with a person with whom familiarity and a set work mode had been built up with time, among which no changes, and order. Social behaviour codes are some of the many obstacles in the communication skills of autists. When they are misunderstood and/or misinterpreted, the possibility of derailment becomes real.
Firstly, teachers do not always know whether the child has understood him or her correctly and usually there is no measurable way to find out whether the autist has interpreted instructions correctly and can execute them (and the other way round. There is no time either to stop a class so that the little autist can catch up. Inevitably performance measurement becomes a nightmare and mostly reflects on the child. The latter is probably much more intelligent and present in the moment than revealed by his or her reactions and this, of course, is very frustrating and unfair.
One-on-one continuous, informed and dedicated facilitation is difficult to get hold of and prohibitively expensive. Seen from within the labour market, this reality significantly empowers the parents and people around autists. It may seem cold and calculated to look at such an exhausting task in terms of a marketable asset. And yet, there are many parents who would pay anything (those who can afford it) to get hold of this calibre of facilitation because it is extremely scarce.
Young autists who can go to school usually have to repeat all schoolwork at home in the afternoon on a one-on-one basis to make sure that instructions and understanding were indeed embedded during the school day. This is the parents’ or facilitator’s job.
Parents and those living with young autists have that experience. Convert it into an income. When your own autistic child someday becomes older and more predictably guidable and you have become more skilled and relaxed, you will perhaps have more time to guide somebody else through your knowledge. You can also “piggyback” new parents and as a consultant help them find the unknown road.
Tania du Toit: Parent of an adult autist