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A parent asks:  My preschooler’s teacher recently told us she thinks our child may be “on the spectrum.” I’m crushed, grieving and not able to accept this. It’s so heartbreaking to see my perfectly happy child diagnosed with this condition.

 Is grief after an autism diagnosis normal? Why am I struggling so with this?

Ellen answers: Many parents do experience grief when their child receives a diagnosis of autism. What is particularly poignant to me about your feelings is that you have not received a diagnosis of autism. Your educator raised a concern–perhaps not in the most constructive or compassionate way–but it doesn’t constitute a diagnosis, nor does it any way negate your child’s happy nature, nor her ability to continue to be happy as she grows. She is the same child she was before you heard your educator’s concerns. 

It’s important that you be able to put the label aside for now, in order that you can focus on determining why your educator felt the need to bring it up. Presumably your child has exhibited behaviors or characteristics that raised concerns. Are there sensory issues, language issues, social interaction difficulties, resistant behaviors, fine or gross motor problems, eating problems? Can the source of the behaviors/characteristics be established? (“Autism” is not a source.) What steps can be taken, what resources are available? Understanding the concerns in a specific rather than general sense, and having options and a plan of action will go a long way in easing your anxiety. If one of those steps involves seeking a medical diagnosis, that’s what you’ll do. But do it knowing that autism is a vast spectrum and that autism itself imposes no inherent upper limits on what your child will grow to be and accomplish.

 Even more importantly, examine as honestly as you can why it is that you feel grief-stricken over the suggestion of autism. Do you think autism sentences your child–or you–to a “less-than” life? There’s so much media hype and horror out there. Tune it out and focus on what’s real for your child and your family.

The autism diagnosis can feel like a loss, perhaps the loss of a vision that parents had for their child that may or may not be realistic going forward. They must adapt to that new image. It might well turn out to be no less fulfilling and no less rewarding than their original vision, but it is different and there is a period there where some parents have difficulty accepting it. And while grief and/or disbelief or denial are common reactions of many parents at the suggestion of autism, sad or negative emotions aren’t mandatory or inevitable. Some parents choose to react in the positive; the diagnosis comes as a relief, because now they know what they’re dealing with. They can gather resources, assemble a team, shape a game plan and move forward. That was my own reaction to my son’s diagnosis.

No one, absolutely no one, can predict what your child may accomplish. At age three, my son was barely verbal, melting down several times a day and had severe sensory issues. I made every effort,  every step of the way to see that he had the best teachers, therapists, family support. He’s in his twenties now, and I can’t even begin to list the things he’s accomplished: lives with autism without letting it define him, attended neighborhood schools and private schools, enjoyed Scouting, back-packing and camping, competed on swim team at elementary level and on track team at middle- and high school level, went to school dances (including prom), football games and other activities with friends, acted in community theatre productions, rides a bike, takes public transportation everywhere, cooks, drives a car, votes, graduated high school–as valedictorian, went to film school, has traveled by plane alone, manages a credit card and checking account, reported for jury duty, goes to college, holds a job, volunteers in the community, has been published nationally.

 I hope that’s enough to give you hope.

Related reading:
Blogpost: Later autism diagnosis doesn’t preclude success

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One Response to “Grief after autism diagnosis: common but conquerable”

  1. Dee says:

    Thanks for the information. I just received a “later autism diagnosis” on my 15 year old on his 15th birthday this past May 2015. I’ve been on a whirlwind of thoughts, and fears over his future. I’ll be seeking some help with making it successful, but homeschooling him now is taking 75% of our daily schedule. 25% of that is perspiration. And I’m sure his little brother is on that spectrum as well. Colorful life I lead.

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