On a seemingly average day my husband and I were summoned to the principal’s office at a reputable school in Islamabad on very short notice. A panel of stern looking faces consisting of my 2-½ year old son’s class teacher, the principal and two school coordinators greeted us.
The principal told us that an incident had taken place where my son had thrown a block on another child’s face. The child’s mother who was present at the time, was ‘livid’ and felt strongly that my son did not belong in the class. I asked them if the other child was ok, to which the principal dismissively said,
“I don’t know.”
She said that they suspected that my son was autistic, as he wasn’t verbal and they started asking a series of questions like,
“Does he play with his sister?”, “How does he react in unfamiliar situations?” in an attempt to make, what I think was, a diagnostic evaluation. At this point I would like to mention that I am a mental health practitioner. Autism is not my area of specialty and neither are children. But I know enough to know that certain diagnostic criteria need to be met to prior to any diagnosis or label being assigned to anyone. It needs to be done by people skilled and trained in the area, like psychiatrists and psychologists. None of the people asking these questions and throwing labels were qualified or trained to make a diagnosis.
Our pediatrician, who knew my son well, was not concerned about him having autism. To quote him he had said, “Autism?! Not a chance!” as he did not meet the diagnostic criteria. He played appropriately with toys, had the capacity to imitate, had an active imagination, had the best attention span in class, awesome fine motor skills and had no pervasive, rigid patterns of behavior. He was not only ok with change but also thrived on it, he had no sensory issues, and followed instructions (when he was in the mood like all pre-schoolers). He was shy but social and for the layperson who knows a little about autism, yes he loved cuddles and hugs, smiled, did not toe-walk or line up toys, flap his hands and made awesome eye contact. He just didn’t talk much. They said he’s ‘violent’, a second label thrown at my son in the span of 5 minutes.
I asked if they felt he had a pervasive pattern of inflicting pain on others deliberately and they replied in the negative. Even at this point my stance was open and exploratory. I thought I was there so we could work out a way to help my son collaboratively. I was wrong. Their stance seemed to be reactive, rigid and punitive. They did not want to facilitate or collaborate. They just wanted to get rid of him and said that he would be better off in a special needs environment. They said that until we found such a place for him, we needed to find a ‘shadow teacher’ as soon as possible. This person was to be with my child at all times, making sure he did not misbehave and to help him learn separately from his peers. We had to pay her salary, on top of the hefty school fee and they would decide if the person was fit to enter their premises and take on this role. I asked them if they could refer someone to us, as we had no experience with recruiting people in this field. They said no and that it wasn’t their problem. I then asked what I was supposed to do with my son until we found this person. They said,
“Well, we will take the risk and keep him.” (as if they were doing me a favour).
I felt that they were being very unreasonable and decided that I would pull him out. I did not want him to be in a place where he was wrongly labeled and seen as a potential threat to others. Plus if he was to learn separately from others, why send him there anyway? Why not home school him instead?
The assistant teacher who had worked closely with him that year was not present in this meeting. She called me the next day, in tears, saying that whatever they had said about my son was wrong. He had never hit anyone before that incident and that what had occurred that day was not out of malice. The block had randomly hit the child and his mother had reacted strongly. In fact she said that my son is quite docile and gentle, something I know to be true of him. She also said he was very bright and independent and that she was disappointed in the management. We were the only parents invited to her wedding recently, because of my son of course. It’s safe to say that they had a relationship.
Needless to say, I felt angry and sad about how my son was treated. I have shed many a tear over it, even though nothing in his life was affected. I have experienced more than my share of paranoia, second-guessing myself as a mother, wondering if they were right and if there was something that they saw that I just don’t see, only to smack myself back to reality seeing proof of him not being autistic right in front of me. Yes, that is the power of a label, even if given by the unqualified. He is now in a new school. It took him just a day to settle as with any new change in his life. The lady who owns the place has over 20 years experience working with preschoolers and conducts the class herself. She told me she does this because it’s her passion rather than for the money. This is clearly reflected in her attitude and the school fee. Also she thinks that my son is a healthy, bright, gentle boy and has promised me that she ‘will never give up on him’.
I have sought the help of speech therapists who have also tried to make it their business to offer unsolicited diagnoses, which they are not qualified to do. I fail to understand why speech therapists don’t stick to speech therapy and venture into the realm of doctors and diagnosticians. Any history that I provide being his primary care giver is not seen as credible as they feel I am biased and withholding information that could lead to a diagnosis. I acquired an informal opinion of a pediatrician at Michigan Hospital, by sending home videos of him playing and interacting, through a friend who works there. The feedback was that he was definitely not autistic. Also, he felt that information provided by primary caregivers should be treated as valuable and not discounted. I mean, who knows the child better than parents? Who else would have the child’s best interest in mind?
I know two sets of parents who have autistic children. They both said that ‘they always knew’ and hence initiated the evaluation process for their kids themselves. Our pediatrician has advised that I be wary of autism specialists and evaluations in Pakistan and let my son develop at his natural pace. I intend to follow his advice. And yes, he is talking more now, without any intervention, just like his uncle and elder sister who started talking at the age of 4 ½!