Humeria, 4, had made progress. Despite the rough start when she didn't know how to sit at a table or focus on a task, she had responded positively to structured support. Gone were her parents' concerns that she would never talk, as the doctor had told them shortly after her diagnosis of Autism Spectrum Disorder (ASD). Her speech was improving, but social issues were still a problem.
She had been having support sessions with me and, in one session, her brother, Ravi, entered the room. I gave him a toy, but Humeria wanted it, shouted, and yelled for her mother. Mom entered the room, furious. "You need to stop teaching my child to share. She doesn't like it. We buy three of everything so each of our children can have the same. She doesn't need to learn to share."
It was shortly after this that the family discontinued the program, despite Humeria's progress and potential. Their priority was that Humeria was always happy, even at the sacrifice of advancement and independence.
As a behavioral consultant working with children with ASD and a parent of a teenager with the condition, I find myself in a unique position. Just like the parents of the children I work with, I didn't always know what the right thing for my child was. I too had my tearful days, and still do, and I too had to put my trust in the professionals who worked with my son.
As parents, our role is to prepare our children for adulthood. For those of us who are parents of children with autism, adulthood looks rather different from the norm. Nevertheless, we need to take our children to the highest place of independence we can, because let's face it: as much as we don't like to think about it, we as parents will be dead one day. We aren't always going to be there for our children and we need to do what we can now to help prepare them for that time.
Telling those who are trying to teach your child self-help skills, "He doesn't need to learn to make his bed, we have three maids for that," as I was told once, is a very short-sighted view. Being able to achieve a task independently swells our children's confidence and courage to try new things, even if there is resistance at the start.
Studies show that early intervention is effective for children with autism (Schopler et al., 1998; Jordan, 2001; Volkmar & Klin, 2005), and research shows that the costs for effective intensive early intervention are 15 to 30 times lower than the costs needed for lifelong support of an adult with autism, to age 55, with insufficient intervention early on (Jacobson, Mulick & Gree, 1998).
Yet sadly, I have been in contact with parents who are willing to ignore this for short-term convenience. Parents who choose not to believe that their children with ASD can improve, who have cancelled support sessions for reasons such as "my cat is sick" and "it might rain." They discontinue support because they "can't afford support and an annual skiing trip." They are the envy of many South African families who struggle to provide food for their families, let alone specialist support.
I am often asked to give advice on parenting children on the autism spectrum. Not all parents like the advice I give, as it takes effort to carry out. Most are genuinely looking for help, but others choose the easy way out because it's just too hard. For example, many children with ASD I am in contact with have decayed teeth. The answer I am given from parents is, "He won't let me brush his teeth." I think to myself, "He is 2, you are an adult, yet the 2-year-old is preventing his teeth being brushed?"
Rather assist the child in building up a sensory tolerance to brushing teeth than avoid brushing teeth, which inevitably leads to general anaesthetic and dental surgery. How much easier it is to teach a child with ASD personal hygiene than to teach a teenager. But to do so requires persistence and considerable energy.
When siblings are involved, parents of children with ASD don't always think of how their parenting impacts their neurotypical (NT) children, meaning children without ASD. When the child with ASD wants to watch something on TV, the NT child must immediately switch off what he or she is watching, otherwise the sibling with ASD will tantrum. Parents allowing this don't realise the message it is giving to the NT sibling: you are not as important to us as your brother with ASD. What he wants is more important than what you want.
Parents I have been in contact with over the years have said things like, "Well his NT brother must just understand that he always wants to sit in the front seat of the car." To the NT child the implication is, "You are second best."
Having trained in behavioral support in the USA and having lived in Denver for 7 years, I noticed a striking difference in the attitudes between parents of children with ASD in the USA and those in South Africa. As parents in South Africa, we seem to be very authority-driven. A doctor says that the child will never talk and your child will need to be medicated to control behavior. Parents accept it.
In the USA, I found parents will make a way. They will prove the doctors wrong and they will keep searching, keep believing, until they find an approach that works for their child. In South Africa, parents follow what teachers say about their children with ASD. A teacher I was in contact with this year boldly exclaimed, "Why are you giving these parents false hope? This child will never read." With structured support, he has now started to read, despite his teacher's lack of faith in him.
I am a firm believer that all children with ASD can learn. I see this with every child with whom I work. This has caused many a conflict between myself and the schools of my clients, where teachers say things like, "What am I supposed to do with this child? He is at school 5 hours a day and he can't read," or, "There is no need to teach a child with ASD to count." It is difficult for parents to believe in their child's potential if teachers don't.
At a recent assessment for a new client, the parents pleaded with me, "Please help us deal with our child's behaviors." I outlined some strategies for the family. The mother looked puzzled and said the school the child attends, which specializes in teaching children with ASD, had told her she must never say "no" to a child with autism. Effectively, the child's screaming, throwing things, and hurting family members had been taught as the family had been advised to allow the child to do whatever he wanted without any boundaries, regardless of the impact on others.
And what of Humeria? I saw her 2 years later at a playground. Humeria came running up to me and hugged me. "You no visit anymore?" she asked. Clearly she had missed our sessions together. I felt sad knowing her mom had misinterpreted crying as a sign that she was unhappy rather than as a sign of struggle to learn a new skill which she would have mastered. I noticed she was still not able to socialise with other children at school, when she visibly wanted to, and that her speech had made no improvement since the family stopped structured support 2 years previously.
Make no mistake, parenting a child with ASD is no walk in the park. And many, many of the parents of children with ASD with whom I am in contact give whatever it takes for their children to progress: commitment, reassessment of priorities, surrendering personal plans to an uncertain future, giving up finances, and sacrificing self for the child's best interests. But it also takes action to promote change, even when it seems impossible. They prove true the motto: "I'm raising a child with autism, what's your super power?"