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How Should I Feel?


There simply is no prescribed way "to feel" after receiving a diagnosis of Autism Spectrum Disorder (ASD). A wide array of feelings and emotions are possible. Some parents/caretakers may feel relief at finally having a label on the condition that has been so troubling and worrisome, others may feel immediate sadness, and still others may feel incredulous! It can seem impossible to imagine that your child will grow up any differently from the image you have designed in your mind for his or her future.

Emily Pearl Kingsley, writer and parent of a child with a developmental disability, described her experience in coming to terms with her son's diagnosis in easy to understand terms. She likens having a child diagnosed with a developmental disability to the experience of planning a trip to Italy and getting off the plane in Holland. Holland is a beautiful place too; it's just different from Italy and not what was expected. In her words (included with her permission):

It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Coming to terms with the hopes and dreams you had and recalculating towards a new set of hopes and dreams is beautifully described in Ms. Kingsley's essay. Psychiatrist Elisabeth Kubler Ross and multiple others have also described the process as grieving the child you expected as you learn and love the child you have.

Dr. Kubler Ross has pioneered the study of loss and grief. Her research determined that humans move through five stages of grief. Grief begins when you come to realize that your image of what will be is going to be different. There is no linear progression through the stages, but rather a back and forth revisit of them.

With experience and support from friends and family, new dreams are born and a new image for your child and your family develops. So, "Welcome to Holland," where life is good, just different than expected.

Additional Resources:

The Center for Autism Research and The Children's Hospital of Philadelphia do not endorse or recommend any specific person or organization or form of treatment. The information included within the CAR Autism Roadmap™ and CAR Resource Directory™ should not be considered medical advice and should serve only as a guide to resources publicly and privately available. Choosing a treatment, course of action, and/or a resource is a personal decision, which should take into account each individual's and family's particular circumstances.