You, yes you, need Autistic friends

The following is a guest post by of  Radical Neurodivergence Speaking

Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It’ll all be ok. But you have some work to do.

The first thing you need to do isn’t find therapists. It isn’t commiserate with other parents. It isn’t become an AAC expert (though all of these things have their place!). It’s something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I don’t mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don’t mean “translate my child to me” (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First, and possibly most importantly but mileage varies: your child is noticing things. If you go through a mourning phase, or a difficult adjustment phase, your child will notice and possibly blame himself. Your child may not have the vocabulary for it, but at some point he will figure out that he isn’t the son you planned for and dreamed of, and he might blame himself for that. We figure it out when we’re a disappointment, even if you do your best to hide that you’re having a hard time. Many Autistic children get in our heads, accurately or not, that our parents only tolerate us because they’re stuck with us.

Your child needs to see you choosing to be around people whose minds work like his. It’s much harder to think your parents hate you and hate your brain when they seek out the company of people who think like you. Seeing the adults who are dearest to you–and like all children, Autistic youth default to loving their parents–seeing them find someone who reminds you of you? That’s supremely important. Do not underestimate the effect this can have, just knowing that your parents would choose to be around you even if they weren’t “stuck” with you.

Another reason: many disabled children never meet an adult with their disability. You might be surprised, and a bit saddened, at the conclusions we come to. Some folks come to the vague idea that we’ll outgrow our disabilities (and when there’s no sign of that, we’re reminded that we’re disappointing, because you can bet we’re getting that message from someone in our lives). Or, I have friends who concluded that their disabilities were fatal. That’s a recipe for severe anxiety, thinking that you’re dying but you feel fine and no one has felt the need to talk to you about your inevitable demise. We need adults like us; this anxiety is completely unnecessary.

Your child also needs role models. She may not be able to fill your shoes, or Uncle Bob’s or Auntie Bev’s or her teacher’s or those of any adult in her immediate sphere. But my shoes may fit, or those of another adult Autistic. All children need people in their lives who they can realistically emulate, & Autistic children are no different. I was pretty young when I knew the adult-woman things being modeled for me were just not going to happen ever–and alternatives were never presented. I was surrounded by folks who were similar to each other and not much at all like me. This is stressful. Making your own make is hard, and it’s harder when everything you do is wrong (the premise of somewhere between many and most autism therapies, and a message also sent by peers, random strangers in the store, other adults, etc). Once again, anxiety. It’s easier to believe you aren’t Doing It Wrong when you know happy adults who took similar trails. Knowing options for the future? Seeing unconventional but fulfilling adulthoods? So important.

If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can’t speak for everyone) welcome friendly parents, but your child is one of us. It’s wonderful but also overwhelming and scary to discover a place where you’re “normal” when you’ve never been, especially all alone. Even good overwhelm is unpleasant when it gets too big. You can make this less of a shock by having Autistic friends. “I’m not alone” doesn’t have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn’t alone, that there’s a whole community that will embrace him because he’s one of ours. The gift of growing up with this knowledge? I cannot imagine it having anything but good effects.

Also, we’re awesome. Autistic people are loyal and hilarious, among other things. We’re good friends. We might provide insight to things about your kid that you never thought of, completely on accident. Your way of looking at the world may accidentally clarify things for us, too. But in my experience, Autistic people are the funniest people on earth, and the most dedicated to making sense and to fixing things that are not right (admittedly, my sample might be skewed, but I also have a very large sample size). That’s how the people I hang out with roll. Making friends with us isn’t just good for your child. We’re good for you, too, and you can be good for us. A true friendship is a mutually beneficial relationship. We have a lot to offer each other.

So breathe, put down the pamphlets about all the different therapies, breathe again, and look in your networks for some Autistic connection. It’ll make your life, your child’s life, and some local Autistic’s life, better.

~

Thank you, K, for your permission to share this important post.
I have the best friends.

Also – I am pretty sure that my son knows that a good many of the people I love most in this world are Autistic.

"Cosplay Stargazers" Image: H looking downwards, dressed in vintage wool trenchcoat, Dr Who scarf and owl hat and K standing behind, mostly hidden by darkness and a hooded cape over a red/orange jacket. K appears to be holding a wooden staff. The background is night black with lighting from below.

“Cosplay Stargazers”
Image: H looking downwards, dressed in vintage wool trench coat, Dr Who scarf, and owl hat.  K is standing slightly behind, mostly hidden by darkness and a hooded cape over a red/orange jacket. K is holding what appears to be a wooden staff, but is actually a telescope. The background is night black with lighting shining from below.

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in acceptance, Activist, Autism, Autistic, neurodivergent, relationships | Tagged , , , , , | 4 Comments

Proud to be Myself: An Autistic Person on Garry’s Mod

I got home late from work today, lugging my books and bags and laptop and some likely-less-that-healthy Chinese food for H and me to have for an easy dinner, as Craig had a gig.

H greeted me at the door to help me with my bags and he was standing tall with pride as he excitedly told me, “Mom, I was an advocate for myself and for Autism today. I advocated on Garry’s Mod [an online sandbox PC game] and they listened to me. I am really proud of myself!”

I asked H if he would like to tell his story and post it on the blog, and without hesitation he agreed, “Yes, I want people to know about this and I think what I did was really ballsy, but I think other people can do this too.”

Here is H’s story:

Today I was playing Garry’s Mod and I joined this server and it looked quite promising at first, but when I scrolled through jobs I saw that one of the jobs was ‘Autistic Person’. When I looked at the description I was really offended, because it said “you listen to Drake and cry yourself to sleep and have random autistic outbursts.” I thought it was really ableist, so I then called for an admin. I told the admin that I found that is offensive and that I myself am Autistic, and that I am an advocate for Autistic people. I was asking them if they could remove that from the server. And then two other admins got involved. We had a small meeting. I told them being Autistic is something you are born with, like your sexuality… like if you are straight or gay. And I told them about ASAN and that I present at conferences and they listened to me.

I feel really good about myself. They said they will try to get it off the server, and I will be checking in a few days to see if they did anything about it.

Apparently some of the admins are Autistic, and they didn’t really find it offensive the way I did, because I guess they’ve grown used to it.

I am trying to build up understanding about Autism in the world and spread the word that Autism is not a disease and it doesn’t need a cure.

Just be yourself.

I am proud to be myself.

H - Proud

Image: Side view of H wearing a vintage wool trench coat and his Dr. Who scarf. looking out across the Fraser River at sunset. The light is highlighting the side of his face , and the water looks like liquid gold. Text reads: “I am trying to build up understanding about Autism in the world and spread the word that Autism is not a disease and it doesn’t need a cure. Just be yourself. I am proud to be myself. ” H [Watermarked: Thirty Days of Autism: Leah Kelley]

And a final note of gratitude from Craig and me: We are thankful to have amazing Autistic, Neurodivergent, and otherwise disabled friends in our lives. If it takes a community to raise a child – this one is raising up a fine young man!
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in ableism, advocate, ASAN, Autism, Autistic, Disability, neurodivergent, TASH | Tagged , , , , , , , | 3 Comments

Holding Space as Acceptance, Love, and Self-care: One year later…

Posted in acceptance, Autism, Autistic, Death, letting go, Love and Self-Care | Tagged , , , , , , , , , , , , , , , | Leave a comment

Disability Day of Mourning: The Loss of Innocence

A few weeks back I asked H if he would like to attend the ASAN Vancouver Disability Day of Mourning Vigil with me on March 1st, at the Woodlands Memorial Gardens in New Westminster, BC.

He asked what the vigil was for – and then as I explained that it was to honour the memory of people with disabilities that had been killed by their families and caregivers – his intake of breath was audible…

There was a pause…

When he caught back enough air to speak again, he asked in disbelief, “How could people do that… to… their… own… kids… and… family? Family should be SAFE!!”

I responded, hoping like I do at times, that the right words would somehow drop from the sky, “You are right, family should be safe. But you need to understand that some people have families that are not safe, and some people think that the lives of disabled people are not worth living. It is also important to know that this is not okay, and so we are working to change the way people think about disability and disabled people. This is a hard thing to think about and to know about. I am inviting you to come, but you do not have to  – it is up to you.”

H took another long breath in, and then said with finality, “I want to go…”

Over the last few weeks I have been thinking back to when H visited The Woodlands Memorial Gardens, in the spring of 2012 with my mother and me.

Woodlands, constructed in 1878 and finally closed in 1996, was an institution, an ‘asylum for those with developmental disabilities and the mentally ill’ and then later a residential school. It was a place of incarceration, exclusion, dehumanization, and the existence of this institution and the attitudes that went with it, denied those with developmental disabilities the right to be valued for who they were and to included in their families and communities.

I wrote about that then (Ghosts of the Asylum in Spring: A look back at exclusion and abuse). It was just before H attended his first conference with me… and I see it still as a conversation of origin for his advocacy, activism, and sense of social justice:

“This past Sunday, my Mom, H, and I walked through the memorial gardens there. We read the signs – telling about the injustices and atrocities that occurred. A touch of spring accompanied us briefly on our deeply moving trek. The sun came out and stole away a bit of the chill, and the early buds promised something more of the spring yet to come. Today was just a glimpse.

I glimpsed another thing emerging today as well… H’s understanding of injustice.

As we read the memorial plaques – H became increasingly interested and was full of questions.

Who lived here? Who? When? Did they put people with autism here??

Yes, honey – they did…

That’s Horrible!”

Yes…

You mean I might have been in a place like that?!?

Well – families were often told that they shouldn’t raise their children. Lots of people – and even doctors would say that.

They were wrong!!

Mom – I feel sad for those people…

~

Gently – gently…

And now the day is here…

I hope I have scaffolded things so that he is ready…

We looked at the images created by Corbett O’Toole for “LISTENING TO GHOSTS: Making Art about Disabled People Killed by their Families” – and I read him the post from last year, with the words of Norman Kunc and Emma Van der Klift – and we listened to this speech from the ASAN Vancouver 2015 Vigil by Amythest Schaber.

H is deeply, deeply empathetic. He feels things soooo intensely, but he knows I will be there – and we have planned for dinner with our good friends Norm and Emma afterwards.

I think he is old enough to build his understanding of why I spend my time, along with so many others, doing this activism stuff… and to know that there is a place for him at the table… if/or when he wants to add his voice.

H may or may not be an activist like his mom, but he will understand why I do what I do – and that he has a right to rail against negative stigma – and not be beaten down by it.

I do not want my son to accept the shame foisted upon disabled people. It is my job as a parent to support him so that he is proud of his authentic self, and that he understands and embraces that disability is a part of this.

Gently… gently… I hope it is enough…

And then I realize…  of course H is not ready.

How can he be?

I am not ready.

I am not ready to feel the pain of those witnessing with us today… as we all absorb the emotion hanging thick in the air – our hearts heavy with imagining the horrific betrayal of those whose lives we are remembering… the lives belonging to the 400 or more people whose names will be read aloud…

Gently… gently… I hope it is enough…

I know H will be surrounded by a community of people who care about him and who have the skills to help him process and keep him safe.  I would rather plan to share this with him in a well-thought-out way than have him stumble across such horrific information without the scaffolding of love and support.

And then, as we were on our way H said, “Today we are going to pay our respect to people who were killed by their so-called loved ones…”

I reflect… that he is taking this in with understanding…

And I also reflect that is it a terrible thing and I hate it that I have to teach this young man about this…

Gently… gently… I hope it is enough…
I ease my son into the loss of innocence…
Gently… gently…
Making room for love and pride to take the place of hate…

Black and white photo of Emma and Alanna reading the names of disabled people who have been murdered. NOrm and Harrison are listening. The arm of a mourner is visible in the foreground, holding a stim toy.

Black and white photo of Emma and Alanna reading aloud the names of disabled people who have been murdered. Norm and Harrison are listening. The arm of another mourner is visible in the foreground, holding a stim toy.

Black and white photo of the reflecting pool surrounded by a lattice work of white carnations and people who participated in the Day of Mourning. They are gathered around and talking after the vigil.

Image: Black and white photo of the reflecting pool surrounded by a lattice-work of white carnations. People who participated in the Day of Mourning are gathered around and talking after the vigil.

Black and White photo of H looking up at and art installation represent cement walls with the barred windows of Woodlands Institution. This is has been recreated so that it is the same height that the windows would have been for the residents. There are candles and flowers arranged on the window's ledge, and a tree can be seen through the bars.

Image: Black and White photo of H looking up at and art installation represent cement walls with the barred windows of Woodlands Institution. This is has been recreated so that it is the same height as the windows would have been for the residents. There are candles and flowers arranged on the window’s ledge, and a tree can be seen through the bars.

Black and white photo of H (a white male teen with spikey hair, a retro woolen tweed trench coat, a Doctor Who scarf and a messager bag) looking at the 10 page list of disabled people who killed by their families or caregivers.

Image: Black and white photo of H (a white male teen with spiked hair, a retro woolen tweed trench coat, a Doctor Who scarf and a messenger bag) looking at the 10 page list of disabled people who killed by their families or caregivers.

Information and Resources:

The Disability Day of Mourning website provides detailed information about disabled people murdered by their families. http://disabilitydayofmournin.apps-1and1.com/index

Anti-Filicide Toolkit. Available from Autistic Self Advocacy Network. http://autisticadvocacy.org/home/projects/disability-community-day-of-mourning/anti-filicide/

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2016)

Posted in ableism, Activist, Advocacy, ASAN, autism stigma, Autistic, Boycott Autism Speaks, Death, Disability, Grief, prejudice, Rail Against Stigma | Tagged , , , , , , , , , , , | 13 Comments

“Stop…” A Poem: Disability Day of Mourning 2016

ASAN's Day of Mourning Poster which lists names of Disabled people killed by their parents or caregivers.

ASAN’s Day of Mourning Poster which lists names of Disabled people killed by their parents or caregivers.

 

              Today I share this poem, originally published in June 2013, to witness and remember the lives of Disabled people killed by their parents and caregivers… 

Stop..
 

Stop
 
These words of tragedy
Emblazoned on notepads and billboards
This epidemic of dehumanization
This narrowed definition of being
Twisted finer and thinner
So that it lacks any sensitivity
So that the words themselves are
A garrote
Cutting into flesh and spirit
 
Stop
 
When words and stance 
are played out deftly
to define other as less
to define different as solely deficit
and are used to silence
This – THIS – is the tragedy
 
Stop
 
My child is burdened with these words
That exclude
And distance
And define other as broken
And are shaped with intent to siphon fear
alchemy-like into big business’ pocketbooks
Words seeded and hooked with the bait of crisis
So the fund$ continue to be reeled in
 
Stop
 
Those who are on your hook
Who take up your fear-filled bait
Feeding hungrily on your emptiness
Your mean lies
They are left empty
And hopeless
Seeing only unmet potential
Instead of the beauty of diversity
This – THIS – breaks this mother’s heart
but at the same time, strengthens her resolve

Stop 

When difference is framed in fear
To stir activity
A call to action
To shore the millions needed to fund
your oft’ wonton cure
And at the same time silences those
for whom they claim to speak
This is not charity
 
Stop
 
The stance of stigma
Whose twisted legacy
Is used justify the pain
The othering
The silencing
The disappearing
The murder
Of people
Like those whom I love best
 
Stop!

Leah Kelley ~ Thirty days of Autism ~ June 2013

Posted in ableism, ASAN, Boycott Autism Speaks, Death, Disability Day of Mourning, family, Rail Against Stigma | Tagged , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Why can’t we all get along?!?

I am 100% in agreement that the stigma and ableism perpetuated by groups and organizations like The Mighty are harmful to the Disability Community, because they are misrepresenting ableism as advocacy. There is much action afoot to have The Mighty consistently align their actions and ethics with their claim that they are supporting advocacy.

But this is the tip of the iceberg.

Within disabilities communities there is an enormous problem related to power with groups and individuals that claim to be working to advocate for or support Autistic people, very often (too often) without including their voices.

And part of the difficulty is that this imbalance of power perpetuates itself and insulates itself with what I can only imagine is a threatened or fear-based reaction.

Parent (and professional) voices tend to have more weight, more reach, more volume, and when they are asked to step aside, or consider the perspectives of #ActuallyAutistic people, or look deeply and see that their actions might actually be harming the people they want to support, their response is too frequently to act as though they are the ones being attacked, and silenced.

I have seen some parents shout down Autistic people and activists and tell them that they are mean and full of hate and too angry.

I have seen some parents, parent support groups, and organizations lash out in ways that ignore the message and eliminate the potential to learn and gain new understanding.

And then they tend to dismiss those activists and their words as too full of hate, radical…

And toss around phrases like, “We’re all entitled to our opinions.”

Or, “Why can’t we all just get along?!?”

Or, “You are creating divisions in the autism community, we need to find the middle ground.”

These words too often seem to be statements that actually translate to… “you need to capitulate to my needs/stance/opinion/comfort because I just said these nice compromising words and I am the one with all the power.”

Why can't we get along 2

Image of frizzy-haired woman with sky and water background. Text reads: “Why can’t we get along” and “everyone is entitled to their opinion” too often seem to be statements that actually translate to… “you need to capitulate to my needs/stance/opinion/comfort because I just said these nice compromising words and I am the one with all the power.” ~ Leah Kelley

And the sad thing is, I believe this response is in part because they are afraid. But these parents, who I suppose have found community and the illusion of support in these arenas, are soaking in a mire that perpetuates their fear, and continues to wash them in the story of disability as hardship and tragedy.

Perhaps they are afraid that if they stepped away from this – they would find themselves struggling… alone…

I have to say that has been the EXACT opposite of my experience – I am so fortunate to have stepped away from the predominant message of tragedy that is the mainstream ableist response to disability.

I have learned so much from my amazing connections with Autistic adults and I am a better parent and educator because of it. I have community. It is a community of support and understanding, and it is full of love and acceptance. This is the community that supports me in understanding and accepting my son as perfectly being himself in this very moment, and then we support development from there.

The reality is, that parents and educators and professionals have the opportunity to play an important role in ensuring that the voices and perspectives of Autistic people are heard and respected, particularly when we are willing to recognize our privilege in being heard as the loudest voices and also acknowledge that disabled people with lived experience are the REAL experts.

In this post from 2013 I was considering my own privilege and opportunities to make space for others (Easy Silence Part 2: The Yin and Yang of Privilege and Empowerment).

I shared: “That sense of privilege has a shadow… and the shadow is the assumption that I have the right to speak up – to say my piece – to be heard… and I am coming to realize that this attitude may actually silence or dilute or diminish the message of others.

I am trying to be aware of this so that I do not assume the same privilege when I am interacting with Autistic adults. If I am working to empower the voices of others – I may need to be willing to make my own subordinate. If I am sensitive to this…  I may feel silenced… I may need to silence myself.

This feels uncomfortable at times… I am learning to make peace with this discomfort. It may feel like I am being silenced by those I am trying to support… and it may even feel like there is an irony to this.

But this is not about me.”

There is no middle ground here: all people deserve respect.

The middle ground’ is a lie designed to silence those who will not work to keep the status quo: there can be no compromise when it comes to respect and human rights.

The Middle Ground is a Lie

Image of cloudy sky. Text reads: “‘The middle ground’ is a lie designed to silence those who will not work to keep the status quo: there can be no compromise when it comes to respect and human rights.” Leah Kelley

There is no divide when parents are willing to support the civil and human rights of the disabled adults that our sons and daughters will someday become.

I invite you to lean in…

And now I will wind up with this signal boost in hopes you will consider reading and sharing these fabulous articles that have been written about the problems with The Mighty:

The Mighty: Apologize For The Harm You Do to the Disability Community! Please sign and share this petition by PACLA (Parenting Autistic Children with Love and Acceptance)

Why I’m not in love with The Mighty by 21 + 21 + 21 = ? (May 2015)

Why I Dislike The Mighty & Better Alternatives for Parents by Lei Wiley-Mydske

Meltdown Bingo: Autistic Edition (aka, a meltdown from the inside) by S. M. Neumeier

Neurodiversity Vs “the Mighty” by Michelle Sutton

A Letter to the Editor of The Mighty by Kimberly Faith

About The Mighty – my thoughts as a contributor by Carly Findlay

Two Ethical Futures for The Mighty by David Perry

Thoughts on #CrippingTheMighty by The Crippled Scholar

CAN U NOT: A Twitter Ode From Me To The Mighty by Emma Pretzel

Open letter to The Mighty by Un-Boxed Brain

The Mighty thinks they want a conversation by Radical Neurodivergence Speaking

Why I’ve Had it With “The Mighty” by Meriah Nichols (November 2015)

Run down of #CrippingTheMighty by Savannah Logsdon-Breakstone

My Response to an apology from The Mighty by Holly

An Open Letter to The Mighty by Cara Liebowitz

#CrippingTheMighty by Kit of Paginated Thoughts

Mentors and allies and #autism by soniaboue

A Christmas Truce by Cara of A Fool on the Hill

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2015)

Posted in ableism, acceptance, Activist, Advocacy, Autism, Autistic, Disability, listening, Neurodiversity | Tagged , , , , , | 14 Comments

Meltdowns and the Lens of Ableism

Meltdowns – from the other side…

Many, many months back Colin Bowman and I began a conversation in the comments section of one of my posts (Yours, Mine and Ours: Autism, Self-Advocacy and Setting Limits). This interaction has been resonating with me, and this post has been inspired by that conversation.

This is such important understanding:

“Avoiding meltdowns, and everything that goes with them, has merit and yields dividends. However risk-aversion carries its own costs. Perhaps more crucially, it may be (and I think it so) that an autistically developing person cannot develop as an individual, unless and until they become able to pass through meltdowns, and perhaps routinely. I think the nub of things is how we manage meltdowns, how we pass through them, what we sift and mine from them.”                   ~ Colin Bowman

Considering current thinking around meltdowns:

What I have often read and what seems to be often put forth as a pretty readily accessible and accepted understanding is that a meltdown should be differentiated from a tantrum. Unlike a tantrum, a meltdown is not a move for power or method for an individual to try to get one’s way – rather it has been framed as something that is not a choice and that a meltdown should be viewed as communication – just as all behaviour is communication.

The logical extrapolation from this assertion is that the meltdown is the communication of a need, or something overwhelming in the environment, or it is the expression of the communication of dissent. From this then, it follows that those working to support an individual who sometimes experiences a meltdown response, should be working to make the environment the best match for the individual in order to minimize the likelihood of a meltdown occurrence.

This makes sense, and a big part of the work so many of us are trying to do is to build understanding so that we can undertake the transformative process to shift the world to be a more supportive and better match for those with social cognitive or sensory processing differences.

The impact of Colin’s perspective:

Since my conversation with Colin, I have been thinking that this interpretation and response to a meltdown is lacking – not wrong – but just not considering another potential dimension or possible perspective.

There is value in to questioning our assumptions to see if there is sometimes another way of looking at or framing meltdowns, as Colin suggests… because I suspect that there is an opportunity to deepen our understanding.

For the purposes of this post I would like to consider and suggest that a meltdown may not always be a behaviour communicating a need, or something lacking or overwhelming in the environment or a situation, or an act of dissent. Although this makes sense, and I am not in any way suggesting a denial of this understanding of meltdowns, there exists the possibility that seeing a meltdown solely from this perspective may be damaging to the authentic and natural development of Autistic processing.  I am wondering too, if there could be an element of othering in this common interpretation simply because it may be too narrowly defined for some circumstances.

What if, just for a moment, we didn’t view some meltdowns as a response to be avoided at all costs?

What if it was framed instead through the lens of an emotional response?

Would we understand a meltdown differently and support people differently through the melt if we saw it this way instead of as behaviour and communication?

Consider Colin’s point again:

“Avoiding meltdowns, and everything that goes with them, has merit and yields dividends. However risk-aversion carries its own costs. Perhaps more crucially, it may be (and I think it so) that an autistically developing person cannot develop as an individual, unless and until they become able to pass through meltdowns, and perhaps routinely. I think the nub of things is how we manage meltdowns, how we pass through them, what we sift and mine from them.”            

I responded to Colin that I might know a little of that feeling – the cleansing of a breakdown and the sense of a fresh start of the aftermath. I have felt that like the promise of a shaft of light breaking through after a storm… there is such clarity and the rain-soaked world feels washed clean and is transformed to sparkly beauty.

I get that this sounds a little schmaltzy – but I do feel cleansed like that after a really intense emotional release and am able to move on in a new way. I know this is not necessarily the same as I am not Autistic, but I am trying to understand through my own experience so I have something to hang this on.

But what if it is the same?

What if when I am overwhelmed I am able to be cleansed by this really good cry or emotional release – but at the same time an Autistic individual is denied this – because that same good cry is labeled a meltdown, and it is seen as a [mis]behaviour or response to be avoided at all costs??

How would I feel when a good cry happens – if it were seen as a failure??  I am concerned that this may be the message that is given to an Autistic person when a meltdown is framed as something that is negative: a failure of the support system to effectively support and/or the failure/fault of the Autistic individual to effectively set limits or self-regulate or self-manage their emotional state.

Along with this – when emergence happens at the other side as an Autistic person works through the meltdown – if the good cry is framed solely through the lens of failure, what lies there may not be that wonderful cleansed feeling of a new start, combined with a shedding of weight and a deep hard-fought release of stress and pain – but… rather… only… shame.

When discussing her experience about The Pain of Meltdowns, Laura Nagle shared:

“…To meltdown is to be broken. The person melting knows it, feels it, feels broken. To be in meltdown is to ride an out of control aircraft plummeting to the ground and with controls not responding, aflame, reality coming up towards one at an alarming rate: and the aircraft is one’s self! To be broken does not feel good at all. To be autistic and out of control; out of your own control; when control is so important to us and so tenuous; is terrible! The melted person did not want to melt!”

and

“…and then you melt. And you feel awful because the melt feels awful in ways that I cannot begin to describe. and you feel awful because you know what awaits you when you return to the real world. What awaits? Bad feelings from everyone around you, and the foundation for the next melt. Then the parent blogs about how awful the meltdown was; if only that parent could know.”

Consider the contrast here…

When I breakdown emotionally, I have finally given in: my limits were reached, and I can say, “I am okay now, I just needed a good cry.” I am ready to build back up. I never feel shame after I have had a good cry – this is even evidenced in my syntax.

Look how easily I can call this a good cry.

I don’t feel judged – I feel relief.

Unwinding ableism from the meltdown…

What is emerging then is a nuanced wondering about what might be the consequences for the emotional development of an Autisic person if we only see a meltdown as negative and undesirable behaviour that is to be avoided. We may be disallowing or blocking the cleanse and processing that moves us beyond the trigger or the frustration.

Further, what if every intensely emotional response is viewed as a meltdown for an Autistic person or by an Autistic person themselves, and it is only seen as an indication of unmet need – rather than an expression of intense experience. If that is the case, we may be denying experience and a very valid expression of authentic autistic processing.

Melting, the good cry, and welcoming the emotional process…

I know when I have had an intense emotional episode – for me it is most often crying – afterward I am different – it is like the world is a little more manageable and I have been cleansed by my storm…

If I take this further,  I can see that I need to work to support H (and others) through this so that he is honoured for his process, and is able to see himself as capable of navigating his way through the storm.

So I am having these thoughts about the meltdown as a potentially important part of processing. I observe that for H his emotions appear to be very intense. If he cannot occasionally meltdown, is he then denied the full range of experience to effectively process his emotions as Autistic person?

Non Autistic people are not denied the opportunity to experience intense emotion and process it however it is best for them…

An intense emotional response (AKA the good cry) doesn’t seem to get labeled and talked about the same way…

If a meltdown is viewed as an authentic and important part of processing emotion, then it seems that we need to be closely examining the messages we send regarding this process and explore opportunities for Autistic people to feel confident in their ability and skills to navigate this intensity and emerge on the other side of the storm.

So I am suggesting we look for opportunities to slightly reframe meltdowns. Of course it is good to adapt the environment to reduce the stressors that will trigger a meltdown, but I want to consider that there may be an important function to the melt that is a part of processing. It is worth considering that there may be times when the meltdown should not necessarily be avoided – if we understand that it is an authentic part of Autistic processing. So much of the focus so often seems to be around avoiding the melt – and then too often if  it is not avoided, it is seen as misbehaviour.

Supporting an individual through a meltdown is important: to be there to support and to help them process when they come out on the other side. There is learning and development that can happen there… in the ability to handle it and move through it.

There are opportunities here.

As parents we can run risk of modelling for our children that we never lose it…

Or… we can tell them we understand and that it is hard. You melt – and sometimes I have a similar experience… (and yes – I know it is not quite the same – but it may be more the same than it is different). There is an opportunity to share after my own emotional outpouring, I can let my son know that I feel may feel badly afterward (if I was hurtful to myself or others) or that I may feel better – but that either way, it is over and done and the important thing is that there is always another chance. I can encourage him and give him the message that it is good to let all those feelings out.

I can let my son see my fallibility – and share my understanding that intense feelings can be challenging. I can model that I can work through them. I can share that there may be some very important processing that goes on in a when experiencing intense emotions.

I give my son the message that it is safe to experience that intensity – that it will not swallow him – and that there is an emergence on the other side. I can support him through it – to the other side – as process: “You are feeling a lot of things right now… those feelings can be very strong. It is okay – you will be okay… I am here for you…”

I can reassure him that there is some cleansing that happen in that state and clarity that can be found afterward.

I think we may perhaps be too quick to judge a melt-down as something to be avoided – rather than an authentic response to a situation that needs to be processed in a more organic whole body way. Supporting my child through this – and also sharing that I sometimes struggle – will only help him to see that it is okay to have difficult times and to feel things deeply and to not be perfect (whatever that might be?).

And if I can honour my son through the process of the melt and have him able to emerge on the other side without a whole shit-load of shame – then he will be more able to authentically honour his own process and learn skills within that process. A melt can be scary – but if it is not layered up with so much shame or is not encountered along with so much accompanying fear – then I believe the process might be very different indeed.

I want my son to grow into a man who can process his emotions in a healthy way. I want him to have skills of resiliency and confidence in his ability to navigate his the intensity of his emotions. I don’t think this will develop in isolation – so I hope to support him in experiencing the full range of his emotional life – in a way that is authentic for him, and to know that he is not emotionally shut down or closed – but is safe in feeling as deeply as I know he does.

A final note:  Thank you, Colin. Your comments and communication always seem to have me perched on the very edge of my understanding – but I am ever so grateful for your gentle push of my capacity to see the complexities inherent in supporting others and in honouring their natural and native autistic capacity. I very much appreciate Colin, and Laura, and the many other Autistic people who share their experiences and insights with such generosity.

Processing emotions

Related posts:

http://sometimesmagical.wordpress.com/2013/10/26/supporting-a-loved-one-through-ptsd-or-panic-attacks/

http://www.thejennyevolution.com/give-your-child-the-tools-to-manage-their-own-meltdowns/

http://musingsofanaspie.com/2012/12/13/anatomy-of-a-meltdown/ (refers to shame – and Alex B in comments does as well…)

http://anautisticbirdsings.blogspot.ca/2014/06/human-frailty-inside-and-outside-of.html

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2014/15)

Posted in ableism, acceptance, Autism, Behaviour, Communicate, limits, Resiliency, Shame, support | Tagged , , , , , , , , , , | 17 Comments

The Inclusive Giraffe Party: Epilepsy and Accommodation

Kassiane teaching the Giraffes about Photo Senstive EpilepsyI brought my giraffe puppets to the TASH Conference in Portland, Oregon…  and then my friends and I made this!

Link: The Inclusive Giraffe Party – Video Transcription

Kassiane Sibley: Kassiane Sibley
Giraffe(s) Puppeteer: Leah Kelley
Camera: Lei Wiley-Mydske
Video Transcription: Jennifer Beierle

“An invitation is not inclusion. I don’t understand why people think that’s all that they have to do then get upset when the disabled person can’t do the thing because nobody cares enough to help create an environment that is actually welcoming and inclusive. Access, accommodations and inclusion are not favors extended to the disabled person and when you treat them like they are, YOU ARE DOING IT WRONG.”    Lei Wiley-Mydske

Related Posts by Kassiane are linked below:

What epilepsy is.
Things I cannot do–because I’m epileptic
I shouldn’t have to beg
Partial WHAT?

No Flash Printable Sign

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in Autism, Autistic, Collective Responsibility, Disability, inclusion, Neurodiversity, TASH | Tagged , , , , , , , , , , , , , , , | 4 Comments

Kermit the Frog on Neurodiversity and Being Green

Hi ho, Kermit the Frog here.

Today I won’t tell you a little bit about Neurodiversity, and different kinds of brains, and Autistic people.
Autistic people want to be a part of the conversation.
They want to be included!
But Autistic people don’t need me to talk for them…

imagesSo instead… today I’d like to tell you a little bit about the colour green.

Do you know what’s green?
Well… I am, for one thing.
You see some frogs are green, and I’m a frog.

And I happen to be the kind of frog that is green.

And that means that I’m green….

You see how that works…

And that also means I can talk about what it is like to be green – because I am a green frog and I can speak for myself…

latestImages of Kermit retrieved from http://disney.wikia.com

You can hear me sing an wonderful song about being green here. Yaaaaaaaaaaaaaaaay!!!

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Advocacy, Autism, Autistic, Educator, inclusion, Kermit the Frog, Neurodiversity | Tagged , , , , , , , , , , | 2 Comments

What the Vulture Calls Unity: #BoycottAutismSpeaks

This last week marked the release of Steve Silberman’s much awaited book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, as well as the publication of his Op-Ed piece in the Los Angeles Times, titled Autism Speaks needs to do a lot more listening.

In the last few days there has been a backlash from Autism Speaks, which I surmise might be because Steve Silberman more widely known and is less easily dismissed as a part of the ‘radical fringe’, and thus a bit more of a liability to their credibility.

You can catch a bit of this action (and reaction) on Ed Asner’s fb page, where he defended Autism Speaks and erroneously asserted that Silberman “… took the hyperbole of the ‪#‎boycottautismspeaks‬ group without actually researching what Autism Speaks does.”

Asner also added:

“Silberman asks readers to imagine an all white NAACP making a preposterous comparison to the executives and board of Autism Speaks. Many of the board members and executives of Autism Speaks have children on the spectrum. They are parents. Parents who, like me, want to see their children and adults living with autism have the best chance at a life they richly deserve. While I agree that it is time for an individual with autism to be on the board, this comparison is misleading at best.

I am a parent that has been helped by Autism Speaks and I believe that anyone with a horse in the autism race has been as well.”

(I have included only a part of Asner’s lengthy post to make a point. Visit his fb page as linked above to check it out in its entirety.)

Autistic activist, writer, and Ed Wiley Autism Acceptance Library founder, Lei Wiley Mydske, responded:

Boycott Autism Speaks is invested in disability rights and justice. Our rights and humanity are not “hyperbole”. But way to completely dismiss Autistic disability activists and our legitimate concerns and grievances with an organization that MANY Autistic people consider a hate group.

Boycott Autism Speaks is a grassroots movement made up of #actuallyautistic people, our families, parents and friends who want an end to the hateful rhetoric, fear mongering, irresponsible fundraising and toxic “support” of Autism Speaks.

I think it is telling that Autistic people have been protesting Autism Speaks brand of “advocacy” for just as many years as they’ve been around and we have been met with silence. A non-Autistic person amplifies our voices and concerns with Autism Speaks, and suddenly, they feel like they should respond. Why can’t they listen when Autistic people are speaking?????? #boycottautismspeaks #nothingaboutuswithoutus

Autistic activist and poet, Amy Sequenzia, also responded:

People with a “horse” in the autism race? Wouldn’t that mean Autistics? I mean, our opinions about our lives do matter, right?

Sure, celebrities show up, it must be good (rolling my Autistic eyes)

Do you know who A$ has not helped? Autistics. That should suffice. Oh, and I am blocked from their social media, because of course, why would my word about who I am have any value (rolling eyes again)

MSSNG. Oh boy! Don’t you see how terrible this sounds to us? We are not missing! A$ wish we were though.

And “Light it Up The Blues” should be the correct name for it. It does do that to Actually Autistic people

What you list as “helped” is what we don’t need: tool kit full of dread about the future; “treatments” that seek to change who we are; segregated “communities”, oh, yeah, A$ lobby against having Autistics during the debate on the Autism CARES Act.

Yes, it helped parents. Which does not mean it helps us. Quite the contrary. Let’s not forget that when a parent murders their Autistic child, A$ is quick to say that the child was soooo severe and the parent was soon overwhelmed.

Let’s check the financial reports, shall we? More money for catering than for family support.

Boycott Autism Speaks does have the information. We found it on the A$ website and we live the consequences of A$ hate.

And before you say “you are not my child” type of thing, go check who I am. I am “that” Autistic A$ loves to say is a burden.”

And Autistic activist and scholar, Dani Alexis Ryskamp added:

“The fact that Autism Speaks has (non-autistic) parents of autistic kids on their board, but no actually-autistic adults, emphasizes Boycott Autism Speaks’ point rather than undermining it. Autism Speaks is a charity run by and for the benefit of those non-autistic parents who remain unwilling to embrace their autistic children as full human beings, autism and all.

This is the fundamental error from which all Autism Speaks’ other mistakes spring. Until Autism Speaks corrects this error, it will never work in the interests of autistic people – only in the interests of those who would prefer autistics did not exist.”

In typical ignoring-criticism and shifting-the-argument fashion, someone took Asner’s bait and asked:Could it be that Mr. Silberman needs to do a little more research on Autism Speaks?”

Really?!? Could it be that Autism Speaks should not be silencing the voices and perspectives of Autistic people, and promoting and spreading the negative stigma that makes their lives more difficult??

(Hint: Yes… the answer is YES!)

Ironically, Asner’s post and the lack of response to Autistic people who commented there is a stark and sadly perfect illustration of exactly the problem with the organization he is working to defend.

Hold this all with you… as a microcosm of all things Autistic Speaks, as you now consider that this week AS has responded to criticism with a “Call for Unity” – a political tactic that is a grossly transparent attempt to shift the attention from accountability to even more effectively silencing and ignoring Autistic people.

Autistic educator, scholar, and aikido teacher, Nick Walker, had this to say about Autism Speaks‘ call for “unity.”

“What the vulture calls unity, the giraffe calls getting eaten.”

I think this pretty much sums it up… and so some doodling happened…

Nick Walker on Unity - Illustration: L. Kelley

Image: a red square with red tinted pencil drawing of a flying vulture (upper left), clutching to the word unity, made of branches with leaves growing out of it. Lower right is the head and shoulders of a giraffe that has an unimpressed look of disgust or worry, and signed L.Kelley ’15. Text Reads: “What the vulture calls unity, the giraffe calles getting eaten.” Nick Walker. (Watermarked http://www.boycottautismspeaks.com and http://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance )

 

I will continue to ‪#‎BoycottAutismSpeaks‬ It is impossible to have “unity” with a group that calls my Autistic friends and family members tragedies and burdens!

Please check out these petitions and links to find out more and take action to support the Boycott Autism Speaks movement:

• Website: boycottautismspeaks.com

• On facebook: Boycott Autism Speaks

• On Twitter: @Boycott_AS (check out hashtag #BoycottAutismSpeaks)

• Petition: To the Corporate Sponsors of Autism Speaks

• Petition: to Sesame Street Reconsider Partnership with Autism Speaks

If you and your organization are interested in supporting projects that are fighting stigma and actually making the world better for Autistic people… please read more about Lei’s Library ❤️ or The Autism Women’s Network (AWN) or look to support local initiatives within your community.

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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

Posted in ableism, acceptance, Autism, autism stigma, Autistic, Boycott Autism Speaks, Neurodiversity, Silence | Tagged , , , , , , , , , , , , , , , , , | 7 Comments