Am I a Card-Carrying Autism Mom or am I Not?


Depressing, crappy rhetoric about autism that I find every day

“Are you sure you want to wear that Scarlet Letter?” asked my friend Nan.  Except in this case the “A” stands for Autism, not like the “A” that has always stood for Adultery in classic literature. But while I sought out that “A,” at the same time, I began my journey to seek, educate, and debunk the rhetorical definitions of what that (“Autism Mom”) may or may not really be.

If there were an opportunity to put existing people and missing people in my life in a room together to talk about all of this, what would they say? About me, about Jimmy, about anything? My friend Nan was the one who observed my son, pushed for evaluations, and used her clout to get into the specialist’s office for Jimmy to get the final evaluation he needed and I wanted.  What you would think now Nan?  Have I fought (yes, that language again!) hard enough or not enough?  You are the one person who is now missing that I wish could be here, because you are someone whose perceptions mattered to me, but you’re gone now.  Cancer stole you away. Cancer is a motherf**r.  Now I degrade into profane and even more awful language. This does not mean there aren’t other important people to help me understand things, to help me be Jimmy’s mother.  There are a lot of people still here and I need them all. It indeed takes a village to raise a child, any child.

But I think you would be so proud of Jimmy and what he has accomplished.  He would not be the kid he is without your recommendations and all the hard work and support you started, and that others have continued.  He got his first evaluation at 3, and starting receiving Early Intervention services, as he immediately was classified as speech delayed.  The people I met at this point, the people in my son’s life are either people I already know or people whose names I know.

The second evaluation confirmed the speech delay but no classical autism signs.  Either way, my professional life and personal life have forever merged.  There are so many people involved in my son’s early life (and so clinical in nature, really), and it isn’t until my autism-radar starts pinging that I remember the other parts of my professional life—the support of self-advocacy, the support of people with developmental disabilities to life full and complete lives in the community, that while I push to get this diagnosis and the assistance my son needs, I realize that I am pre-loaded with knowledge to guide me forward. I am resistant to the Autism Mom archetype. Period.


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