Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives (reblog)

Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives (reblog)

crippledscholar

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.

Yesterday, on Twitter someone shared this video and asked me for my thoughts.

Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.

I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.

I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I…

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I Abused Children For A Living (reblog)

I Abused Children For A Living (reblog)

Diary Of A Birdmad girl

I abused children for a living. It didn’t look like abuse. It didn’t feel like abuse (at least not to me) but it was definitely abuse. I see that now. Back then, I actually thought I was helping those kids. In fact, it was and still is considered ‘therapy.’ And not just any therapy- the most sought-after autism therapy, often the ONLY therapy insurance will cover. To this day it’s lauded as the only “evidence-based treatment” for autism.

You see, I was an ABA therapist. My official title was ‘Behavior Technician’ which in itself is really telling. I was hired off the street with no background in child development, no knowledge of autism or ABA, and no experience working with children, let alone autistic children. I. Literally. Did. Not. Know. What. Autism. Is. And I wouldn’t find out what autism is in the years that I worked there either.

To…

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Living the ‘lie’ (reblog)

Living the ‘lie’ (reblog)

the silent wave

I’ve written a lot before about acting and masking.  For the cheap seats, it’s a prevalent theme throughout the Asperger’s/autism spectrum community.

The way I see it, “masking” is the idea of putting on a proverbial mask, one that covers up your true personality, your true self, etc.  In essence, hiding who you truly are.  “Acting”, on the other hand, is related, but different; one either adopts the characteristics or even persona of another, or perhaps constructs a new persona altogether.

I’ve acted and masked all my life, from my second year of kindergarten onward (yep, you read that right; I spent two years in kindergarten.  Long story.  Not due to intellectual or cognitive impairment).  Acting and masking are survival traits of sorts for me.  I couldn’t have “functioned” in this world without them.  Masks and acting roles construct a hologram of me that is deemed acceptable by my peers.

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The double-edged sword of labels in the autistic world (reblog)

I dream of a world in which to say that one is Aspergian/autistic conjures up accurate imagery.

I long for a place and time in which someone can disclose their status and be met with acceptance, support, or even a neutral indifference.

I’d like to build a society in which the use of the “autistic” term does not ignite fear and apprehension.

I would love to see a culture in which to tell someone you’re on the spectrum doesn’t change the other person’s perception of you or how they treat you.  A world in which to say you’re autistic isn’t followed by being treated with skepticism or talked down to.

Source: The double-edged sword of labels in the autistic world

My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child (reblog)

Interesting read.

This brings us to the third point which is that she cares about observational behavior, or how similar to neurotypical it is, and ignores health. Because focusing on observational behavior in the moment and ignoring energy levels and a long term perspective on health means that my kid’s health will suffer.

As a consequence of not paying attention to health, she doesn’t acknowledge symptoms of stress, and instead she’s prone to explaining most problems with a lack of motivation. When an autistic kid is dead tired on a Monday morning and crying because the demand of brushing teeth and putting on clothes is too high, she explains this with that he or she (no other genders exist to her) isn’t being challenged enough. No matter how much information I’ve given her that explains that this can happen when the weekend has been too energy consuming, she doesn’t really believe me.

Source: My Mom Is an Autism Expert and I Don’t Trust Her to Take Care of My Autistic Child

why i #BoycottAutismSpeaks (reblog)

why i #BoycottAutismSpeaks (reblog)

Powerful.

a diary of a mom

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{image is a photo of me at a lectern, addressing the crowd at an Autism Speaks dinner in Hartford, CT. I believe it was 2009.}

I thought that I was doing right by my child.

(I didn’t know yet how radically I wasn’t.)

I thought that I was fighting for her.

(I was fighting HER.)

I raised money.

(A lot of it.)

I gave speeches.

(To get other people to give money too.)

I thought that helping my daughter meant finding a cure for who she is.

(Think about that.)

I brought my daughter to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy, a scourge, a casualty of a brutal epidemic.

(I am so sorry, baby. So, so sorry.)

And then I started to get it.

To understand the damage being done to autistic people in the name of helping…

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Why we need more than Autism ‘awareness’ … all year ‘round! (reblog)

I really enjoyed this post.

Which brings me to April. The whole focus on Autism ‘awareness’ troubles me. It seems to be a slightly more benign version of the sorts of comments listed above. What is awareness? I am aware of difference – there are many different groups and backgrounds people come from. It doesn’t mean I have any understanding of what people from the groups tend to experience or feel. For example I know there are people living in Mongolia. I am aware of Mongolians.  But if my understanding stops at awareness, that is all I know. If I expand my awareness a little I might discover that in Mongolia, the horse is a very important part of daily life for many people. I might see a photo of a yurt and a photo of someone drinking a fermented mare’s milk drink. Does any of that awareness tell me about what it is like to live in Mongolia? Does it stop me from being prejudiced against Mongolians in the unlikely event that the whim to do so takes me? No, not really. Awareness is not anywhere near understanding.

In terms of Autism, awareness is hardly a useful thing at all by itself. When I was an Autistic child at school, a lot of the bullies were very aware I was different. They used this to torment me. If all I asked for in life was awareness then I’d probably get bullying and some more of those rude comments above rather than anything helpful or inclusive.

Source: Why we need more than Autism ‘awareness’ … all year ‘round!

#JuliaWeGotYourBack #AutisticandProud 

Eve of American Badass Advocates (http://americanbadassadvocates.org) has written an excellent piece in response to those who would criticize the presence of a humanizing representation of an autistic girl on Sesame Street.

From the article:

This is what all kids should be seeing — not hate, exclusion and otherness .  Autistic children deserve to be included in society, represented in our culture and seen having a positive impact on communities too.

So, Julia just came out into public on Sesame Street and already a backlash.  Something Autistics are familiar all to well. Maybe this negative can be created into a positive.

Can we set an example of support? Support for this Autistic puppet — to represent support for Autistic people?

Yes, she’s a puppet, but Julia needs our support. Let her, and other little Autistics that are watching, know that we got her (their) back out here. Let’s help Elmo and his friends support and advocate for Julia.

Maybe we can take this BS and create something good.

 

Read the rest here: 

#NormalAutisticHere | Sesame Street’s Julia Humanizes Autistics, and Some Folks Hate That