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On Being an "Autism Mom"

by Sally Willbanks
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On Being an "Autism Mom"

So, I have just found out that the term “autism mom” is offensive to autistics.  I did not know this, but after reading the why’s, it makes sense.  It is offensive because it is more than being a “dance mom” or a “soccer mom”.  Those are somewhat trivial activities, whereas autism is something that is intrinsic to the individual and cannot be ‘worn’ by anyone who is not autistic.  If you are a white mother of a black child, you are not a “black mom”.  If you are the seeing mother of a blind child, you are not a “blind mom”.  “Autism moms” also get a bad rap for making their child’s autism all about them, for publicly exposing private matters and behaving like their child’s autism is a massive burden for them (and not the child).

 

But here’s where I get stuck.  I was using the term to find my tribe, to find a group of mothers who can support me when times are tough.  I do not want to find a group of mothers who take on their child’s autism as their own personal burden, but I do want to find mothers like me, who need help, support and understanding.  My son’s autism can tear our family unity apart.  Not one of my friends knows what I go through on a daily basis, the struggles, the stress, the aggression, and also the absolute joys, the surprises, and the pride.  I can’t tell them; they wouldn’t understand.  So, I was using the term “autism mom” to find online groups of parents that do understand.

 

Another quandary I have is whether or not to talk about my son’s autism 100% openly.  I have a blog that is read by friends and family, and I touch on things, but I don’t let it all hang out.  I have an Instagram account for ND Renegade that is gaining popularity.  But how much can I say while respecting my son’s privacy?  Is the answer to say nothing at all?  How will people ever learn about the highs and lows of autism, and parenting an autistic child, if we don’t speak up?  How can we educate people, and make changes to society if no one outside of parents with autistic children knows what is going on?  How do we get the support that we need, and more importantly, open people’s eyes to the truth of autism?  And by truth, I mean the struggles and difficulties, as well as the successes and incredible moments.  How do we show gratitude for our incredible children with honesty and integrity if we can’t speak about them openly?

 

I have no answer to these questions.  What I do know is that I will immediately be pulling our “autism mom” and “autism dad” products from our store.  Once you know better, you should do better, and I have no wish to upset anyone.  What I would like is a better term to describe parents of autistic children so that we can find each other, support each other, and understand each other.

by Sally Willbanks

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