Grieving for a Sense of Identity

I’ve heard or read this admission more than once: “A diagnosis for my child is basically a diagnosis for me.” At this point, testing for autism or Asperger Syndrome is very likely to occur, and the parent will be supportive of the process. That might not have been the case prior to such a statement. In fact, there is a good chance this parent was resistant to evaluation of their child – an evaluation that might risk damaging that parent’s sense of identity and normality.

In 1969, Elizabeth Kübler-Ross released her influential book On Death and Dying, in which she postulated that anyone going through grief will progress through a potential set of five stages. In short, the stages are denial, anger, bargaining, depression, and acceptance. Despite how these stages are portrayed in popular culture, an individual does not have to go through all five stages, nor do they necessarily happen in the same order for every human. (Most people will, at least, experience denial and acceptance.)

Kübler-Ross applies these stages beyond death and dying. She claims any perceived catastrophic loss can bring about this cycle.

This is where autism comes in. Prior to the 1990s, autism was viewed exclusively as a profound disability often associated with extreme antisocial behaviors and mental retardation. After decades of research, the addition of Asperger Syndrome and high-functioning autism to the DSM-IV profoundly altered the landscape of autism. With this alteration came the realization that many adults may be undiagnosed, but they would likely remain that way due to the way special services in this country are handled almost exclusively through the school systems – most notably during the elementary years.

Autism and Asperger Syndrome usually have genetic links to the parents, most commonly the father, but I have seen a couple instances of mother-inheretied traits. It’s very likely that one parent identifies more strongly with the child, seeing a younger version of him-/herself in the child. There is nothing wrong with the child because, “He’s/She’s just like me, and I’ve turned out okay.” I don’t type those words disrespectfully or lightly because, implicit in that statement, is a certain hold on reality and identity that an educator may be in the process of shattering.

Compare these phrases to the stages of grief.

  • Denial: “There’s nothing wrong with my child. They’re just like me.”
  • Anger: “Why are you singling out my child? Why won’t you give him/her a chance?”
  • Bargaining: “Just wait a couple more years. I’m sure this is just a phase.”
  • Depression: “I don’t know why I try. You must think me a terrible parent.”
  • Acceptance: “A diagnosis for my child is basically a diagnosis for me.”

In all fairness, this progression could be applied to a parent coping with the realization that his or her child has any disability. However, in the case of autism and Asperger Syndrome, I think these stages can become much more pronounced. An educator isn’t just asking a parent to shift his or her perception of a child. That educator is also implicitly asking the parent to take an inventory of self and everything he or she has viewed as normal for the past several years – whether or not either party is consciously aware of this internal warfare.

My plea is especially aimed toward educators – among whose numbers I am to be counted. This plea does not come from someone on the outside looking in; someone who is ignorant of the pressures and difficulties inherent in the current system; someone who views you as an enemy; someone who has never seen this painful process from your point of view. I ask you to look at that hesitant and resistant parent with the same eyes with which you look upon your own children, and see what is hiding underneath. Outwardly, he or she might seem belligerent, quarrelsome, and unreasonable, but buried underneath all of that may be a grieving soul who wants to cry out for help.

I remember riding in the car – a red Stanza – on an evening drive back from church on a peaceful interstate, and my fiancée (now wife), while having me grill her over some of the psychology materials she would be taking an exam on that week, suddenly slipped into the conversation, “I think autism could explain a lot of your behaviors.” I never believed her. In fact, we would argue about it at times – until my little buddy Nick was diagnosed with Asperger Syndrome during my second year of teaching. Then everything clicked into place. That journey took years. Don’t expect a parent’s journey of self-discovery to be any easier. An ingrained sense of self is a painful thing to shake. Reach out to the parent as you would a child. (Would you really just throw a bunch of badly copied handouts and impersonal informational packets to one of your students?) Understand the potential for grief, and always be ready with a soft answer.

Secondhand diagnosis is not the most pleasant way to discover something hidden within yourself. You, as an educator, can make the journey a little bit easier with a dose of understanding and patience.