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Friday, September 6, 2013

(I'm Back) Don't Jud-diddly-udge. A Re Run

(In light of some terribly tragic news in the online autism community re. the Stapleton family I thought I'd put this post up again.)

In the autism community we're pretty good at judging each other critically. Always trying to gauge who chooses what treatment. Who ascribes to certain theories of causation. Who tries to change their children's behaviours versus those who claim to embrace them without question. Those who have an autism diagnosis chastising those who don't for their feelings about autism and visa versa.

In the mainstream community we see often what's known as the 'mummy wars', where the parenting styles and philosophies of (mainly) mothers are pitted against each other. In the autism community we see these criticisms amplified, and thrown in are also the opinions of people without children, or with children who do not have autism. Then of course we have mothers who are autistic and have children with autism. In that mix are children who enjoy conversations about complex topics, capable of leading an independent life and children who are intellectually disabled, who will depend on the care of others for the course of their life. And every other variation of autism imaginable. The day to day circumstances of autism families are widely disparate, so assuming two parents or autistic people share much in common on the basis of an autism diagnosis alone is incorrect. Autism affects people, and the families who love them, very differently. And this leads me to my point about living with autism and judgement.

It's not just how autism manifests in our children that determines how we proceed with treatment, how we feel about ASC's, or how we manage day to day. It's also not just about the philosophy we choose to embrace regarding autism. It is about our own internal reserves. Our individual resilience going into parenting, and then on top of that how we respond to the additional stress of raising autistic children with their unique presentations.

If I have a child who verbally stims and as the parent have misophonia, then how I respond will likely be different to a parent who does not have such an auditory sensitivity. If I am a parent who has endured trauma as a child, I may well be triggered by my own child's meltdowns. Unable to remain  present in the face of a loved ones pain. If I am a person who is uptight about structure and neatness and I have children who are destructive and unaware of the chaos they create, I may struggle to maintain a sense of reason and calm in my response to those who create the mess. If I am raised in a culture that refuses to acknowledge disability in any other way than fundamentally broken, then perhaps I will find it particularly difficult to understand a neuro-diverse narrative. If I was bullied as a child, my confidence to help my child navigate their school years may be lacking, in fact I may be terrified for them, becoming neurotic in the process.

My point is, even if we compare our children's difficulties, and smugly claim to handle them with dignity and acceptance whilst others do not, what we don't share is the same back story. The same internal resources and perspectives. The same resilience or mental and emotional stability.  If we dismiss people who are struggling to cope with the pressures of raising their autistic children by assuming it's simply about the narrative they embrace we can do harm. When we direct frustration at parents with whom we don't agree, we fundamentally invalidate their feelings, and push them away rather than create a space for constructive dialogue. We also miss the important opportunity to direct people towards supports and resources that may help a family in dire need of them.

I'm not saying the narrative we choose about autism isn't important, but that it's formed by our personal journeys. Some parents do not come to the autism parenting path well equipped. And even those of us who are pretty resourceful and resilient can find the going tough. So prior to the rush to lecture, patronise and judge, it might help to step back and understand the person's context a little. To open up a dialogue that allows for genuine expression of fear, anger, confusion, resentment, sadness, and yes, grief.  To validate those feelings and then offer what you as a listener find helpful. Allowing the other person to take the advice on board, which they will be far more likely to do when not being admonished or criticised for their feelings and thoughts.


17 comments:

  1. Yay! You're back! This was so insightful and right on the money, I'm so glad that you took the time to get those thoughts down. I've missed reading you :)

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    1. A greater compliment I could not ask for x

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  2. Thanks Alysia and Jillsmo, I havent always done this myself. In fact Ive been down right condescending at times. I'm trying to change that.

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    1. Haha, I was just thinking that I love what you say here, but I suddenly feel guilty about my own behavior at times... This was a good read. Right on.

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    2. Sunshine, I am sure I contradicted myself somewhere within an hour of posting this :)

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  3. EX.actly! Well said "Me"...wish I'd written this myself. ;)

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  4. Except for parents who are using their children as guinea pigs for random autism-causation hypotheses with no basis that actually cause discomfort, pain and harm. Those fuckers can burn under my judgmental gaze.

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    1. Um yeah, well, you know how I feel about that stuff :) I'm trying to keep those people in mind too :)

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  5. A good read. So tired of all the judgement out there.. Makes me want to return home to NZ and set our family up in a backwater farm away from everyone.... mind you, not sure that I could cope without any internet! :)

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    1. Thanks BSoL. I have similar fantasies from time to time, but I like my city comforts :) Thanks for stopping by.

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  6. I was involved in a discussion about these issues just this morning - this is so timely and well written. Thank you!

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    1. Hi Julie, I'd be interested to hear more about that discussion.

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  7. Awesome, totally love this. Well written and very insightful. Fully agree with what you have said. Glad to see you back.

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    1. HI Penny, great to see youre still blogging away too.

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