And the journey begins …

cc Ian Britton

Or maybe it’s just a new chapter in the journey.  Yeah, probably that.

I had a word dumped on me this week that leaves me shaken.  A word about my child that I didn’t expect to hear, certainly not in the conversation we were having.  A word that describes my child’s school’s understanding of him, which does not mesh with my understanding.


How long?  How long have they thought he had autism?  Yes, I know he is different.  I know his behavior sets him apart. I had always thought–assumed–believed–it was ADHD.  Maybe severe ADHD.  But ADHD is a diagnosis I can handle. I can talk about ADHD.  I can understand ADHD.  I can handle ADHD so well that I’m the coordinator of our CHADD chapter.  No, ADHD doesn’t explain all of his struggles, but it is a start.

But autism?  That’s a whole different monster.

The guilt sets in.  Early detection and intervention is important.  It is key to living a good life, right?  To being able to function in a mainstream class, to not being so different that he can’t function in the world.  But this is not early detection.  He is five — FIVE, almost six.  And the doctors said when he was 2 that he doesn’t have autism.

But they also knew something was wrong.  And he’s been getting therapy for the past 4 1/2 years.

How long have they known?  How long have they been hiding this from me?  I feel betrayed.  I had thought we were on the same page, and it turns out we were not. At all.  They could hide behind words like “young child with a developmental delay.”  They could evaluate and not diagnose.  Because he is a young child and he has a developmental delay.

She used it so casually, as if it was something everybody accepted about him already.  It isn’t as a bad thing.  It just is.  She had no idea that the word–and its implications–were not put on him at home.

A diagnosis is not merely a set of symptoms.  A diagnosis is a word, a word that can change a viewpoint.

No wonder they were so impressed with how he behaves at school.  They have given him a word, and with it the expectations that follow from that word.  He is succeeding because he does not fall to those expectations.



You are More than a Diagnosis

Receiving the DiagnosisI have friends who recently received devastating diagnoses.  One learned from the doctor that she has lupus.  Another received a school evaluation that stated her daughter has autism.

In the moment you receive that diagnosis, something changes.

It is hard to forget, at that moment, that you* are more than your diagnosis.

You are the same person who you were yesterday.  Anything you were capable of doing yesterday, you are capable of doing today.

Yes, there are more limits, more restrictions on what you can do.  They may be dietary or physical restrictions, but these restrictions do not change who you are.  It does not change your personality, the friend you are, the parent you are, the child he is.  It does not have the power to make you any less of a person.

The diagnosis does not define you.  It describes your health.  It is not you, merely a new way to describe something that, deep down, you knew already.

It is hard when the world recognizes what you have tried to deny for so long.  There is a loss.  Grieving is part of receiving the diagnosis.  But don’t let that grief turn into depression.  Don’t let that grief turn you into something that you otherwise are not.  Take the time you need to process what this diagnosis means for your life, because yes, the diagnosis is life-changing.  It is not a cold, where everything will be “normal” in a few days.  You are facing a new normal, new restrictions, new medical procedures.

But you are still you.  Don’t let go of that.

*  If you are reading this and a diagnosis is about a child, a parent, or someone else you love, please take liberties when reading this.  Your child is more than her diagnosis.  Your father is more than his diagnosis.  Language structure prevents me from encompassing everyone in this support, so I just type “you.”

What’s on my menu?

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