To Be Formal or Not

You know you are having a stressed day when your autistic child looks at you and says:

“Mom your autism is showing. You are going to have a meltdown pretty soon. I know I feel it coming in me too.”

And then she proceeds to tell you why she KNOWS that you have autism. Now, let me be honest here, I’ve never been diagnosed formally but when mentioned in passing to Em’s psychiatrist how I was so much like Em at her age that her psychiatrist concurs that I’m probably on the HF end of the spectrum. 

That brings me to the post I’ve contemplating writing for awhile; the why I don’t seek the formal diagnosis post. Em has one. God knows how hard I fought to gain her a diagnosis and proper therapies. I did it all for a purpose for her; to make her able to have a life where she can be a happy and productive member of society.

Those weren’t my only reasons. I did it so we could understand her. I wanted to know how to work with her. I wanted to know how we as her family could help her function without getting overwhelmed or shutting down. There was a reason to get a diagnosis for her.

For me, what purpose would it serve now as I’m almost 40 and I’ve developed coping skills? I know when I need to step back. I know what I am capable of handling and when I am going to struggle. I know my own quirks. So would getting a formal diagnosis for me change who or what I am doing in my daily life? Life wouldn’t change with or without a diagnosis for me, as far as I can see or tell anyway.

That’s why I’ve opted into just setting into being the best role model I can for Em. I stress to focus on the cans and not the cannots. I teach her to take time outs for herself and know when she needs to walk away to regroup. I am working with her on pausing before she speaks so she can think through all the stuff she’s heard before she responds, kind of like when the computer tells you it’s “thinking”.

Do I see myself any differently knowing what I know? No. I just make a lot more sense to myself and can relate to my daughter so well that we both can sense each others imminent meltdowns and try to redirect each other.

I just keep watching her journey and wondering where her life will take her. Knowing what we already know and seeing what we are already seeing… The sky is above her and she’s going to soar high and far.

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3 thoughts on “To Be Formal or Not

  1. I think the same way about getting a formal diagnosis as an adult. There’s no real reason for it unless you need it to get into therapy or something like that.
    That’s good that you and your daughter can sense each other’s needs. I wish I had someone like that in my life. It really helps when someone understands and tries to help.

  2. I too have wondered about myself since my son was diagnosed. I see so much of myself in him but even more so my father and my husband. I wonder often if he received a double whammy from both sides of his family. It’s a tough call for me whether I should seek a diagnosis for myself because I honestly don’t know if it in my genetics or if it was conditioning from my father. Regardless of if I eventually seek to be diagnosed I am glad that we have a framework to work from for my son.

  3. I didn’t seek out a diagnosis, it sort of found me. Sometime in my mid-thirties, while discussing my life, my children, the reasons I was sitting in my psychiatrists office, he said, “You do realize you are on the spectrum yourself, don’t you?”

    Of course I had realized it, quite some time before, but I am who I am, I know this. I too have developed coping skills throughout the years, I was always so busy helping my boys navigate autism, the thought simply never occurred to me to make it official.

    Now it is. My Dr. Advised a diagnosis could be helpful in the future, I do require medication to help curb OCD and anxiety, he said it would be good for my future Doctors to understand why. I never needed validation for who I was! but in some small way! it was kind of nice :o)

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