Wednesday, August 12, 2009

Grief and Bananas

It is a time of good-byes and transitions.

I have felt transition coming for some time now. I could feel it in my bones, in my restless breathing, and in the way my muscles tensed up when I seemed to be going in the wrong direction, even if that direction was the one I'd been moving in before.

Today I said good-bye to a client of mine, a 9 year old autistic boy whose family is moving to southern California. I have known this young man for 19 months; he and his family are very dear to me.

Carl Jung said that the therapeutic relationship is, by its very nature, a relationship of love. Our medicalized mental health paradigm denies this relationship, denies its loving nature. The paradigm comes from an outdated objectivist wave that overtook the sciences with the beginning of the industrial revolution. Everything became mechanized and we seemed to believe as a culture that the best way to get anything done was to break it down into its component parts and subject it to detached analysis. Emotion was completely ignored, and emotional involvement discouraged.

And yet, I work with children, special needs children who require tenderness and play and loving but firm boundaries. They do not fit into the mold of our regimented culture, although in their symptomatology, they seem to try. Yet, the autism field is so steeped in business and research models that I have simply resorted to calling it the "autism industry." It is exactly that, a needs-based industry driven by an ever-expanding market as more and more children are diagnosed with this condition.

As a behavior therapist, I am confronted daily with the paradox of loving the children I work with and trying to work that love into the corners and cracks of an industry built on a business model. While my superiors speak of play and encourage our sacrifice, they often don't honor the sense of play that a child needs, nor do they honor the sacrifices therapists often make in order to serve these amazing kids. Instead, they demand more - more data, more hours, more sacrifice.

I have been taken off several cases so far this year for various reasons. Sometimes, teams are just shifted around with little or no explanation as to why. With all of them, legal and business models prevailed and unless I or the parents demanded it, no effort was made to give these clients closure. Please bear in mind that one of the significant challenges of people with autism is social functioning. People with autism have varying degrees of difficulty in reading and responding to social situations, which limits their abililty to form relationships with others. Trust is difficult to build and even more difficult to maintain, as often these kids have trouble recognizing the signs and subtle signals that most of us take for granted in our relationships. So, once a therapist builds rapport and creates a therapeutic relationship with a client, that relationship should be treated with care.

I hear a lot of talk in this industry about consistency for the sake of the child. Specifically, I have heard this word a lot in the context of my being taken off a case. But I really doubt that this consistency is really for the sake of the child's development. I think it's really for the convenience of scheduling sessions and meeting quotas and deadlines. While that is certainly a part of the industry, what happens is that the therapeutic relationship gets sacrificed. A therapist will get cut from a team with no opportunity for the therapist or the child (not to mention his/her family) to have closure. And that hurts the child. With all of this industry's emphasis on developing social skills in clients, what we teach them in this sort of experience is that their service providers are really only that: service providers, not trusted mentors, not friends, not even therapists, in the Jungian sense of the word. And they learn to not put a lot of trust in us. The lesson we teach them in this experience is that therapists just go away, and that they should NOT actually form close relationships with the people who help them. In the language of this industry, we are asking for one response, while reinforcing the opposite response.

As the result of a work-related injury, I was taken off the last of my cases a few days ago. I had been with this child for over a year, and we'd formed a very close relationship. Our sessions were fun, integrating programs into activities he loved doing, and they were characterized by laughter as well as hard work. One minute I was on my way to his house for a session, and then, after a phone call to the office, I discovered all my sessions were being covered by other therapists.

My grief was devastating, so much so that I became dehydrated, losing so much salt and water that my legs cramped up. I was grateful that I'd had the remarkable foresight to buy bananas to replenish some of the essential minerals I'd lost in wave after wave of grief. The destruction of trust can happen in many ways and not just from the perspective of the child.

I would like to work toward a redefined autism field, one that is characterized by love and playfulness and healthy boundaries. We can still collect data, but I'd rather meet the child where he or she is and then take things from there. I want to find out their fears and then, instead of denying those fear, work with them, transform them, and help these kids learn to love and trust the people in their lives, and behave in a way that is worthy of that trust.

Either that, or we all invest in expensive therapy and lots of bananas.


  1. Hello, you don't know me yet, but I was recently pointed in the direction of your blog by my brother, Todd Trembley. It is interesting to me that the first post I read of yours was about autism and the industry therein... mainly, an industry that appears to harm kids rather than treat them. I discovered this very same sentiment in the education field when I worked closely with one autistic child that I would have adopted, should the need come up.

    I hope you don't mind me continue reading and possibly getting coffee with you sometime. I'm currently on the path toward grad school in either special education or some form of therapy. Your experiences are so heart-fully described here. I would love to learn more of them and your thoughts.

    I apologize if this comment seems a little creepy. Please feel free to email me or get in contact with me through my brother. Perhaps some day I'll come back to Saint Paul's and meet you there.

    Thank you for your thoughts and writing.

  2. Hi there! It's Katie, right? :) My deep apologies for not seeing this comment earlier. Blogger changed formats, and I'm still acclimating to the changes. I feel dreadful that this is almost 3 weeks late!

    We should most definitely talk more. I have recently received word that not all agencies which serve the autistic community are like this (thank God!!). There's one right here in the Seattle area that employs a friend of mine, and he swears it is so much better. Nevertheless, these are huge things against which we (who love the kiddos) should keep up our guard.

    By all means, keep reading, please! I hope some of this helps. And no, it's not creepy at all. :)