Grieving the Dream and Living What Is

When I first began delving into the words written by parents of autistic children, I found myself troubled by phrases like “the heartbreak of an autism diagnosis.”  At the time, I was just beginning to develop a positive identity as an autistic person, and I felt offended that people would feel heartbroken at having a child like me.  At the same time, I recognized that the grief was sincere, and that I couldn’t possibly tell someone that his or her feelings were wrong.  I’ve been known to argue with an outlook or an idea, but not with a feeling.  Feelings, in my view, are not open to disagreement.

I’ve come to understand the grieving, I think.  I’ve come to understand it because, having received a diagnosis at 50, I’ve gone through my own grieving process.  And what I’ve come to learn is that my grief is not about being autistic.  I don’t feel that it’s unfair to have been born autistic.  I don’t feel as though some terrible tragedy has descended upon me in mid-life.  I don’t curse my fate and wish I were just like everyone else.  I’ve never asked who I might have been were it not for my parents’ abuse, and I have no inclination to ask who I might have been without being autistic.  Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring.  The One Above made me just as I am, and I respect that.

And yet, I grieve.  I grieve the loss of the person I thought I was—the person who could navigate the world like everyone else, the person who could do anything she wanted if she worked hard enough.  I grieve the things that I’ve always wanted to do but am physically unable to do.  I grieve the loss of my apparently privileged status as an apparently neurotypical person.  In short: I’m grieving what was never there to begin with.  I’m grieving an idea of myself and of my place in the world.  I am not grieving what is or what was.  I am grieving what doesn’t exist and what has never existed, except in my own thoughts.

This understanding came into focus in the days after I met with a woman at a local civil rights organization.  She works in the area of disability rights, and I approached her in my role as the leader of the Vermont chapter of the Autistic Self Advocacy Network (ASAN).  When we set up the meeting, I told her about my auditory processing condition and about the kinds of accommodations I need—namely, a quiet space and a slow conversational pace.  She was quite welcoming and offered to meet anywhere I wanted so that the environment would work.  We ended up meeting in her office, which is just five minutes from my house.

In some ways, the two-hour meeting went very well.  She was very friendly and very dynamic.  I learned that she works as an advocate for parents, attending IEP meetings and helping to protect the rights of children.  I learned that she does a great deal of anti-bullying and anti-harassment work, running compliance trainings for schools throughout Vermont.  I learned that, as a person of color, she had been through severe racial harassment as a student, and that much of her work is powered by the conviction that no child should ever go through bullying at school.

The downside?  She spoke very, very fast and provided a great deal of verbal information.  I was able to see, right away, that asking her to slow down would not have worked.  I don’t think she would have been able to do it.  Her work is very stressful, and she was clearly up to the task, but what made her so good at her work also overwhelmed my auditory processing system.  As the meeting progressed, I felt more and more overstimulated, and less and less able to find the words I so badly wanted to say.  And because I’ve never seen a nonverbal signal in my life, words were all I had.  Without nonverbal shortcuts, the process of listening and speaking became exhausting.  I probably should have cut the meeting short, but I wanted so much to make connections with other people working on disability rights that I stayed glued to my chair.  Needless to say, I needed a few days after the meeting to get my nervous system back into a state of calm and balance.

Helping advocate for the rights of parents and children, especially bullied, harassed, or otherwise vulnerable parents and children, is something I’ve wanted to do all my life.  I have a fire inside me when it comes to injustice, and much of the recovery work I’ve done for 25 years has been aimed at being able to go out there into the world and fight the good fight.  I want to go to IEP meetings and be a supportive advocate; I want to be able to walk into any situation and do workshops and trainings.  When it comes to making right the wrongs of the world, I’ve got the spirit of a warrior.  And yet, no matter how patient, how brave, and how intelligent I am, I can’t make my auditory processing system do what it isn’t made to do.  I can’t change, by an act of will, the way I process speech and sound.  I can’t see a nonverbal cue, and no amount of explaining is ever going to get me to.

As I’ve looked at what happened at the meeting, the truth has become clear:  I am an experienced and conscientious researcher, writer, and editor.  I am highly intelligent.  I am very sensitive.  I am absolutely tenacious.  But there is something I cannot do:  I cannot implement my work in a chaotic or dysfunctional environment.  In the quiet of my own home, I can put together a fact sheet about children’s rights.  I can interview people and develop materials on bullying and its impact.  I can help to create an anti-harassment workshop.  I can gather large amounts of information and organize it in a myriad of ways.  I can do the behind-the-scenes work, but I cannot go into the thick of things and be effective.

It’s not that I’m incapable.  It’s that I cannot find an environment in which it would work.  An IEP meeting is not such an environment.  A compliance training is not such an environment.  Any situation in which people are under stress, not at their best, and talking at cross-purposes is not such an environment.  In those environments, almost by definition, accommodation for my disabilities becomes impossible.  After all, if the situation were friendly, functional, and fair, there would be no need for me to be there in the first place.

This realization represents the end of a decades-long dream, and there’s sadness there.  I imagine that it’s an emotion similar to what a parent feels upon receiving an autism diagnosis for his or her child; it’s the end of a dream, and there’s sadness there, too.  I remember how many years I planned for the birth of my daughter, how many years I dreamed of all the fun we would have, how many times I told myself that I couldn’t determine the future and yet found myself looking forward to a multitude of things.  Being autistic, I might have had an easier time with an atypical child than most, because I’ve always been the one who is different.  But a typical parent has typical dreams, and there is grief in letting go.

In large part, those dreams have to do with life being safe and welcoming to a child and, as we all know, the world is often not a safe and welcoming place for autistics.  I have been bullied, and ignored, and left behind, in many different ways, all my life.  And yet, I don’t wish I were different.  I wish the world were different.  I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.

The grief I feel is for what never was and for what has yet to be.  It’s not for who I am.  And I imagine that, for parents, the grief is for the dreamt-for child and the dreamt-for plans; it’s for the opportunities and the safety and the welcoming that the world does not yet make possible.  And it’s absolutely right to grieve that child and those plans and the state of the world as we know it.  But grieving all those things is different from grieving that we are autistic.  I want to say to parents, “The child who is here does not need to be grieved, any more than I need to be grieved.  There will be new dreams, different dreams, dreams that are based on what is real—not on the doomsday prophecies of doctors with God complexes, not on research that barely scratches the surface, but on the child you see in front of you, whose life you are committed to nurturing.  That’s the only basis for a dream—your flesh-and-blood child, longing for a way to manifest his or her reason for being in the world.”

Each of us is here for a unique purpose that no other person can ever serve.  There is so much to be done.  So let us grieve our dreams.  Let us carry our grief with dignity.  And let us get to work.

© 2010 by Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg blogs at Journeys with Autism.  Grieving the Dream and Living What Is appears here under the terms of this Creative Commons License.

Rachel Cohen-Rottenberg’s recently published memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.

[image: Rachel Cohen-Rottenberg, Sojourning in the Visual World]

on 10/12/10 in Autism, featured | 2 Comments | Read More

Comments (2)


  1. Gwen McKay says:

    A very powerful article, Rachel. I started to write a longer comment, but it seems to be turning into a post for next week instead.

  2. Thank you, Gwen! I’ll look forward to reading your post.

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