In our ongoing “spring cleaning” (which never seems to end) I came upon a large spiral notebook filled with notes from the dozen or so ABA therapists who came to our home beginning in November, 2004 through August, 2005. Emma was just two years old when all of this began. It’s a fascinating document of that time period and it depresses me to no end. Over and over the notations remark upon Emma’s “clingy-ness to Mom”, her “whimpering” and “despondency” when I would leave the room and her internal discomfort.
It is impossible for me to read the notes and not see an obvious pattern. For a therapy that prides itself in collecting data, it is curious that this larger and, what seemed to me anyway, obvious pattern was largely ignored or, perhaps it is what naturally happens when we pathologize a neurology. Emma’s desire to seek comfort and assurance from me, her mom, was seen as a negative, something to be trained away, something that was getting in the way of more important things. It is ironic that this was being said about a young child who was diagnosed with autism, which has, according to all those experts, as one of its most defining characteristics, “social impairment” and an inability to form close bonds.
A two-year old not wanting to go off with a stranger is considered a “good” thing by most people. That this same child would prefer being with their mother, even after getting to know someone else, would still, in most instances, be thought of as an excellent example of bonding and having a close relationship with one of the most important people in that person’s life – their mother. After all, if you cannot trust your mother to protect you, to be there for you when you are two, how will you learn to trust anyone later in life?
Richard and I talk about “what we would have done” all the time. Not as in – what would we have done if we could do it all over again – as much as, what would we do now if we had a two-year old today who was just like Emma. And the first thing, the absolute first thing would have been PRESUME COMPETENCE. That is the key, the foundation by which everything else would have been gauged. This does not mean expecting a two-year old to understand, know and behave as a twenty year old. It means we would have presumed she understood and felt what a two-year old is capable of understanding and feeling not less.
When Emma began her ABA based preschool in the fall of 2005, I was told to drop her off and immediately leave. Yet when my non autistic son went to preschool they had a three-week “transition period’ in place where parents routinely stayed with their child, slowly reducing the time they stayed until eventually the child separated from their parent when they felt comfortable to do so. Each child was different. Some children ran off within the first few days, others needed more time, some needed several weeks, but no one said, “Leave now, even though your child is hysterically crying and clinging to your leg, it will be good for them.” I remember asking about this at Emma’s preschool and being told they didn’t allow parents to stay with their child as this only prolonged the child’s suffering. How is it that one method is good for one child, but not another?
Knowing how sensitive my daughter is and was, knowing how intensely painful this must have been for her, I can only sit here, filled with sadness that we just didn’t know better. It was as though, when we got her diagnosis, all common sense left us.
So I am asking all my Autistic friends – What would have helped you when you were a small child? Would it have been helpful to have your parent stay with you until you were comfortable and felt safe enough to go off on your own? Would you have liked knowing your parent was there, even if you didn’t need to be right next to them? What do you advise parents new to all of this?
OT session ~ 2005
Emma's Hope Book 