“Mackie is autistic,” said my daughter-in-law on a transatlantic telephone call from Denver, Colorado (USA).
Silence from me in Cape Town. Then, “No, he is not. He can’t be.”
“Yes, Mom. He had a four-hour assessment session with a psychologist and has all the symptoms to place him on the autism spectrum. We always knew we had a problem and now it has a name. We have a way forward at last.”
I could not agree with this. I knew better because as a social worker in a psychiatric children’s clinic in the 1970s, our multidisciplinary team diagnosed autism. The term applied to children who did not communicate and were apparently not bonded to anyone. It was an extreme condition which we saw in less than one percent of the clinic’s caseload. Our reference for assessment was the 1960s research by Lorna Wing, an English psychiatrist who realised that some children’s lack of response to others was not due to low intelligence but rather to cognitive and emotional withdrawal which she called “autism”. We could not know these children’s intelligence or indeed any of their capabilities or potential capabilities because they could not show us. There was no “spectrum of autism” at that time for us to discern characteristics that could benefit from intervention. There was in fact no treatment for a child who had autism, no hope of accessing any human qualities, no plan for parent counseling.
Mackie, my grandchild, 4 years old at that time, in contrast had a superior vocabulary at 18 months, was well-bonded with his parents and expressed emotions. True, his original good speech was currently of mumbling mode and his previously cheerful demeanour was currently fearful. His level of activity had also dropped; all changes that could be put down simply to a stage in the complexity of growth. Mackie certainly did not fit my criteria of autism. We must not label him and steer him onto a path of pathology, I thought.
“This is an example of American over-reaction. Leave him alone. He will find his own niche as he develops. He will be excellent at an exclusionary job, like working with computers,” was my recommendation, the grandmother, social worker and university professor. Grandfather agreed, of course. Unbeknownst to us, due to our distance between continents, so did Mackie’s father.
Fortunately, our recommendation was not accepted by my daughter-in-law.
“The next step is to find a behavioural therapist specialising in autism who will come to the home and work with us all,” she said.
On her own, without advice from professionals who did not know the resources, she took charge of a problem that had been worrying her for three years. Mackie, whose diagnosis at 4 years of age was late, as autism is usually evident by 2 years of age and must be addressed early, was immediately provided with the best American facilities in speech -, occupational -, behavioural – and play therapy.
He received a disability grant which helped pay for his treatment. His mother read everything on autism she could lay her hands on and made others in the environment read it as well. Everybody had to cooperate with the behavioural therapist’s intervention plan which disrupted Mackie’s own plan of solitary play and thoughts. Ideally, his interpersonal system was to penetrate his state of own worldliness and develop a more typical theory of mind. Those at home listened to his distress as the therapist firmly did exactly this. I advised his mother to go out and leave him to the therapist to avoid her own distress, which is what I would have done in South Africa, but American requirements for responsible parenthood forbid such separation between parent and child. Mother suffered while Mackie learned.
Therapy situations alone were not enough to teach him. The social environment in general must control Mackie’s behaviour. Repetitive behaviour must be disallowed, new experience must be encouraged and the desires of others must be heeded. A general joining in with the world was the aim.
The hunt was on for a suitable school. This was not a straightforward hunt at all. We debated between mainstreaming on the one hand, where Mackie would have a good cognitive education but might be neglected in social and emotional aspects, a natural tendency with a child whose greatest wish is to be left on his own in a busy classroom; and on the other hand special schooling where attention is paid to social and emotional development but the educational outcome is sub-standard in a child of superior intelligence. In Denver, a satisfactory conclusion was reached with the choice of a private church school, where Mackie’s behavioural therapist was allowed to work in the classroom alongside the teacher. Such assistance was not permitted in the public school in America, or indeed in any conventional school. In South Africa, the child with autism is even less accommodated as the label is even more unfamiliar. Having been rejected by three schools, Mackie’s only resort left was home schooling, indeed very bad for his social development, until a private school took him on trial.
The dilemma of choice of school remains a thorny issue as the classroom environment needs to continuously attend to the autistic scholar throughout the child’s growth. Worldwide, very few teachers understand the spectrum and even fewer educational facilities promote the development of affected children. This is a serious issue that parents of special needs children have to face every year. Uncertainty surrounds: “Will the teacher be interested in my child who is different?” “Is the school equipped for special needs?” “How will my child be included in school activities?” And even, “Will my child get an education?”
When I arrived in Denver from Cape Town in January 2006, my daughter-in-law presented me with “The Autism Sourcebook,” a detailed scientific study by Karen Siff Exkorn (2005). I read this between John McEnroe’s “You Cannot Be Serious” (2002) and watching a previously unknown Cypriot called Marcos Baghdadis win his way to the finals of the Australian Open Tennis Championships. A good mix of concentration, humour and relaxation to pave my way in getting to know my grandchild in his foreign country of birth. Then I visited friends in Santa Fe where the husband, a clinical psychologist, remembered his work with Ms. Wing in England as revelationary and the wife, a social planner, had the autographed book, “The Speed of Dark,” a novel by Elizabeth Moon (2003) about an adult with autism, at hand to lend to the family. My daughter-in-law does not want to read it, having read too much on the topic. My son as a slow reader prefers action with his son to reflection about his difference. But I was by now eating up the topic. Both Ms. Exkorn, Ms. Wing and Ms. Moon, are parents of children with autism, writing from close experience as well as from careful research, and Mr. McEnroe, while not knowing autism as far as I know, certainly represents difference in his lifestyle and his thinking. And I observed Mackie.
“Mackie, Mackie,” said several times while seated next to Mackie evokes no reaction until his mother instructs him to answer his grandmother.
In the playroom, I comment on what Thomas the Train, the present focus in Mackie’s life, may be thinking on his way uphill. Furious to the point of desperation, Mackie shouts, “Trains don’t think! They don’t think! Don’t say that!”
Mackie presents a fluent monologue on the subject of the planets, going on for five minutes until his father interrupts him, saying gently, “That is scripting, Mackie. You must stop scripting now.” Mackie’s facial expression is unperturbed. He stops speaking.
Waiting at the airport, a woman is rolled towards us in a wheelchair. Mackie goes up to the wheelchair, strokes the woman’s hair and asks her why she does not walk. She replies that her legs are sore. He repeats his question until I call him away.
“Mackie, Mackie. You won the spelling bee. That is so good. Your family is so pleased with you. How do you feel about being the cleverest one in the competition?” Mackie says nothing and goes on looking at a page in front of him.
Ms. Exkorn writes about very active intervention with the child who has autism and its positive effects. Cause for the different brain structures has not been established, autism cannot be prevented or cured, and it can only be modified. This author’s own child, who became mute at the age of 2 having been particularly bright, responds to behavioural intervention with remarkable, though slow, results. Stories of treated children feature change from isolation to friendships, albeit tentative, from silence to speech, albeit not the most sensitive, and from rigid routine to tolerance of change, albeit with some discomfort. A spectrum of autism with five categories emerges and the spectrum is widening. Difference becomes more common as our understanding of social behaviour grows. Those who were considered retarded, schizoid or simply weird can learn to participate. The rate of 8-year-old children on the spectrum is currently estimated to be 1:110 (Centers for Disease Control and Prevention, 2009). We are all thus likely to know someone on the spectrum. Certainly there will be one child in every school standard. Yet, autism remains a strange topic, at best disregarded, at worst distrusted.
We embraced the active intervention approach to Mackie and he responded, all the time against his will. His father said that his best therapist was his brother and I agree. Mackie is carried along by Mike’s enthusiasm as well as by his correction.
What I find difficult as grandmother of a child who has autism has nothing to do with the child himself. It has to do with social circumstances. Thinking of the efforts taken to socialise him, seeking the best treatments, cooperating with a home therapy plan, constantly monitoring him, preparing him for change, prompting his behaviour, mediating all his experiences, enduring his frustration at being made to turn away from his natural tendencies, with parents in fact becoming full-time operant conditioners, I become unhappy hearing about his mother’s distress in the face of thoughtless interference. People ostracise Mackie saying: “Are you the mother of that child who doesn’t listen?” From the gymnastics club, “You should take your child to the Special Olympics. He doesn’t fit here.” “Why don’t you have your child psychologically investigated?” And of the gentleman who said, “I know a therapist who can assess him,” I would have asked, “Do you get commission for referrals?” Beware your patronage, ye happy helpers. It creates more burdens for those who care.
Meanwhile, Mackie is functioning better and better. He now, at the age of 9, replies attentively to his name. He walks into a room and greets people by their names. He makes appropriate comments in the midst of conversations. So far from ignoring me, he asks me questions. So far from protesting when touched, he shows and accepts affection. He is a loveable boy. Fortunately he does not suffer from hyper-vigilance and its consequent inhibition, which troubled me when I read of those who do not experience the empathising “theory of mind” like typical people do. Of course his wonderful concentration grows apace, leading to advanced cognitive skills in vocabulary and general knowledge. When I hear him jump up and spontaneously define, for example, “potential” (which he had overheard me mention) as “capacity for success,” my reaction is to require assurance that his unique abilities are being channelled at school. There are no spelling bees or similar activities in South Africa where some of this uniqueness could be demonstrated. His cognitive abilities were never in doubt. My question is however: Will the world have the full benefit of these abilities? We can only persevere and watch; we cannot merely wait and see. I am grateful that I do not have to contemplate a Mackie who had been left to himself, as was our own (and I am sure very common) advice when we first heard that he had autism. There is some hope and space in the world for those on the autism spectrum; more must be made.
Kathleen Jane Collins, Ph.D.
University of the Witwatersrand
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.