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


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

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


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 and )


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:

• 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.


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

Packing and Unpacking: Distance Education and the Social Model of Disability

I am finally packed.
Gah – I am so terrible at packing…
It taxes my executive function because… anticipating… and predicting… and sorting… and organizing… and planning… and DECISIONS!!

So now that this is done, I will tell you about my next adventure because there are some potentially amazing opportunities on a global level and I am excited by the possibilities.

The Commonwealth of Learning, an organization created by Commonwealth nations to support an international educational initiative for the development and sharing of Distributed Learning (distance ed/open learning) resources and technologies, has invited me to present at their conference in Belize: Innovative Schooling: Transforming Pedagogy, Increasing Access, to Ensure Learning.

And I am leaving today…

I will be presenting with Education Professor, Dr. Maxine McKay, from the University of Belize, whom I met in 2013 when she and her colleagues visited the school where I work, on the outskirts of Vancouver, BC.  At the time of her visit, Belize was opening its first Open Learning school, and we took the opportunity to discuss the possibilities that exist within DL (Distributed Learning) to support students with disabilities.

Dr. McKay and I will each have short time to present as a part of a panel, followed by a period for questions and discussion, so I am trying to figure out how to make the most of this time.

I am mindful that this conference is not just about DL/Open Learning in Belize or other developing countries, but that it is also an opportunity to influence ideas around disability for those in positions to make decisions that affect educational policy. I am humbled at the opportunity to be a part of this conference, one that promises to examine the intersections of disability and poverty and access to education in developing countries and beyond.

The Commonwealth of Learning’s mandate is to provide access to education for students regardless of race/sex/economic situation, and it is exciting that they are interested in considering how DL/Open Learning can create access for students with disabilities. I know that other presenters will have the technology and resources aspects covered; I understand that I have been invited because they want to ensure they also continue to focus on the students, and they think I can talk about that with heart and passion…

So I am leaning toward discussing the Social Model of Disability vs the Medical Model, and how DL/Open Learning can function as a bit of an end-run around the barriers that might exist for students with disabilities, in that it can give them access to education where inclusion is not widely practiced or implemented. This is a beautiful opportunity to look at creating structuring systems and building understanding and capacity in order to support students with diverse learning needs.

More specifically I can talk about how distributed learning (distance ed/open learning) can be a good match for students – and why – and what our schools and teachers and systems and society can do by building their understanding and capacity to be open to other ways of seeing and doing and experiencing things, and the multiple and diverse ways to represent and measure learning.

And we need educators to learn from the voices and perspectives of disabled people who are the real experts… There is a lot of stigma and untruth out there… and it hurts…

And that it is the attitude of acceptance of the individual in the very moment – exactly as they are – combined with presuming competence – that will create the most opportunities for diverse learners…

So I am stepping back from specifics in some ways and speaking more philosophically to work on strategies that build capacity and understanding and will encourage educators to draw on this information like the blogs in my blogroll (Pssst over there to the right —> ) to inform their practice…

I also want to discuss that just because we have the technology – or the programs and resources… it doesn’t mean we will meet the needs of diverse learners; that takes building capacity in our educators, and we need to build understanding about presuming competence and welcoming dissent and so many other things…

And, too… the home facilitator/parents need to be supported in unwinding the pathologized aspects of the diagnostic process, because Developmental Disabilities, such as Autism, are generally diagnosed by comparing a child to what is commonly expected and looking closely at the things that are not  developing in ways that are typically expected. The diagnostic process is deficit based, and in my experience, parents need support and direction in breaking away from this perspective.

We need educators and parents to understand that they are being sold a bill of goods with the negative rhetoric around disability, and beyond this – as a society – we need to realize and recognize that disability is not a tragedy but a natural part of the full range of human experience. People with disabilities are valuable and should be honoured, respected, and INCLUDED, and DL/Open Learning educators are positioned in a way to make this happen!

Autstic Sun - A painting by H


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 acceptance, Autism, Disability, Distance Education, Distributed Learning, diversity, Educator, executive function, inclusion, Special Education | Tagged , , , , | 5 Comments

The Singing Bowl and making curtains… and LOVE!

Second half of summer…
We’ve read some, puttered some…

And now I am clearing off a bit of the diningroom table to set up my sewing machine…

Our dining room table is family central.

Craig and H do H’s distance ed work here… I set up by computer here… Today I am moving a few things to set up my sewing machine.

Yes… I have a sewing machine.
I can sew stuff…
well, sort of…

I can’t read a pattern – but I can figure out how to put stuff together. Like H, I am spatially pretty adept and now I am setting out to make curtains for The Beast (AKA The Millenium Falcon).

We are going for the gold… and orange, so to speak, as there is simply no point in fighting The Beast’s 1984 colour scheme. I am developing a new appreciation for Harvest Gold, and all sorts shades of orange… and I’ve been overjoyed with a couple of lovely melamine bits and other kitschy finds in these shades.

I have a mix of material I have found in these colours… and I have measured and cut… and am ready to begin, and yet, there is so much prep to do.

I hate prep… it taxes my executive function.

As I was moving about the dining-room stuff, and sighing with the realization that I would also have to change the thread in the machine – including the bobbin – I set my eyes upon Craig’s Tibetan singing bowl… (he got it for a gig with the Vancouver Symphony – but I have since commandeered it). I paused to give myself a couple of calming moments with the lovely resonating sounds that I can hear… and feel… and entirely control.

At this point Craig noted: “Some people say that when the tone changes or the sound grows louder – that indicates spirits passing by…”

H smirked: “You mean Booze?? In the air???”

We laughed

I responded: “Oh, frickity frack! What are we going to do with you…?!?”

Without missing a beat H declared: “Love me!”


Okay then… back to work… Making curtains for the Beast!

30 Days of Autism - New Curtains for the BeastIn retrospect, I am not sure what renewed me more – the singing bowl or H’s comment – but either way, I’ve completed a bit more of this project, and we are loving our wacky, wild and wonderful new curtains!


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 (2013/15)   

Posted in acceptance, Autism, Autistic, executive function | Tagged , , , , , , , , , , | Leave a comment

H: ‘Not an Impostor’

H and I recently co presented as a part of the training for the summer staff of our local Community Living/Inclusion organization.  This was a really fabulous experience for a number of reasons.

The openness of the staff to considering the ideas and perspectives being expressed was obvious, and very much appreciated.

For me it is particularly important to be able to feature H’s experience and perspective, not only because of my commitment to the idea of ‘nothing about us without us’ (and the specific commitment to this I have made regarding my presentations), and the impact this lived experience has in expanding the understanding for others, but also because it empowers my son.

Presenting is such a powerful way for this young man to feel he has some agency and can take an active role in combating negative stigma. The role this has in supporting his healthy sense of self is critical to cultivating his advocacy skills as he transitions to adulthood. He is learning that his voice and perspective have value and matter.

As a parent, I also feel it is my responsibility to look for opportunities to encourage and support H in rejecting negative stigma. I want my son to stand strong against organizations and messages that work to tear him down, or shame him because of his neurology. If the negative messages about Autism were not so widespread, I might be inclined to shield him from such things, but the idea that Autism is a disease to be cured, or eradicated, and that Autistic people are tragedies and burdens, is so pervasive that this does not seem to be a reasonable option.

I shared this in our presentation, and I appreciated the response of the participants, particularly since my son is involved with this wonderful community based organization. I understood that for some, this might have been the first time they had heard about the problematic practices of organizations like Autism Speaks. I am pleased that they will now be in a position to look more deeply into this – and I shared the Boycott Autism Speaks site (, so that they are able to access information if they are curious to learn more.

I am encouraged that disdain toward Autism Speaks is becoming a mainstream response, as people who care about social justice and human rights become more educated about their practices. I intend to continue to work to educate others on the damage that this organization is doing with their unique combination of fear rhetoric, and a lack of inclusion and a silencing of Autistic people.

And I am impressed with our community based Community Living organization and their committment to inclusion and acceptance, which is evidenced in their desire to include H in their staff training.

H was asked what was important and why he liked participating with Community Living activities.

He responded without hesitation: “I feel accepted!”

And then… at the end of the day, Craig asked H how the presentation had gone.

And H had the best response of all:

“It was great! They didn’t just hear an impostor’s words. They found a person who is Autistic expressing themselves!”

Image of smiling relaxed looking H sitting cross-legged on a stump in the woods. Text reads:

Image of smiling relaxed looking H sitting cross-legged on a stump in the woods. Text reads: ” ‘It was great! They didn’t just hear an impostor’s words. They found a person who is Autistic expressing themselves!’ H” Watermarked: Thirty Days of Autism: Leah Kelley

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, Activist, advocate, Autism, Autistic, Boycott Autism Speaks | Tagged , , , , , , , , , , , , , | 6 Comments

H on Autistic Pride

H on Autistic Pride: “Be your own true self!”

Photos of H in a Novelty/Costume shop wearing a rainbow unicorn mask and an Adventure Time t-shirt. Text reads: Autistic Pride Day "Be your own true self" H (Water marked Thirty Days of Autism)

Photo of H in a Novelty/Costume shop wearing a rainbow unicorn mask and an Adventure Time t-shirt. Text reads: Autistic Pride “Be your own true self” H (Water marked Thirty Days of Autism)

 This image is a part of the 6th Annual Autistic Artistic Carnival… be sure to check out the other submissions on Jason Ross’ blog!


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 Autistic, Autistic Pride Day | Tagged , , , , , | Leave a comment

“Code” a Poem for H by N.I. Nicholson

A few seasons later… and I am still left breathless by the beauty of these words and images.

By N.I. Nicholson

Dear H: for those of us to whom words
sometimes do not easily run, saunter, or even
amble: we speak in code. We think in code. We
construct our languages painstakingly
like little Tolkiens, separated by time, distance, and space:
but the Hobbits and the Elves ain’t got
nothing on us. We have the dexterity
of pictures, objects, or even
moving film to send messages to world,

or even to our own selves. Like
ladybugs made of burnished cinnabar
inlaid with little obsidian gems, loud like volcanoes,
each careful crafted by a God hand
and set loose to fly away home: these
little three-dimensional living hieroglyphics
exist so that your neighbor Mrs. L
can hold her place in time and never collapse
or fold up inside forgetful darkness. Or like

little goldfish that represent your great grandmother
in your dialect: I see them, made of amber,
or made out of mother-of-pearl and then
lacquered in the gold resin usually reserved for
rebuilding the broken bodies of cracked-apart
teacups. And after the repairs, those teacups
are bequeathed with a new set of gilt, gleaming veins
in their skins.

I have heard some say that we are broken.
Busted up toys.
Dolls that do not speak when their strings are pulled
or even worse, that wax loquacious like
caffeinated rivers preaching single-subject gospels
to the world. Little toy cars that only drive
to a single destination. Action figures content to
line up their weapons according to size and function
when no one is looking. But no one ever looked closely
to see the veins of gold in our skins
that hold us together: I found mine when I was
thirty-four years old. And you, you are a
superconductor, transmitting plans for mechanical arms
made from K’nex and Lego iPod holders
from brain to fingers, manifesting
solid creations from invisibility. Just like
I manifest poems from the unseen code books
in my brain.

It is at best, ignorance, or at worst, arrogance,
to assume that a language unknown
or unable to be decoded
communicates or means nothing.
Maybe you have heard of the Navajo code talkers
of World War II: their modified dialect of code
was so sophisticated that even a captured Navajo soldier
who didn’t know the code told his interrogators
that the transmissions he heard sounded like
nonsense. Your symbols, my moving picture poems,
and the language of every other autistic,
are electrified with all kinds of color, and so
I offer a toast to you, my young friend:
let us keep speaking in code as long
as we walk this Earth. Our languages are not mistakes,
or broken syllables, or to be dismissed as mere
unintelligible nonsense. They simply need our translations
to be understood.

Written 12/14/12
© 2012. N.I. Nicholson. All Rights Reserved.
(Reprinted with permission)

This poem, originally published at Raven’s Wing Poetry, was inspired by a post at Thirty Days of Autism in which the author speaks of empathy and how her son uses physical objects to represent people in his life who have passed away, so that he may remember them. Because the nature of autism and how it manifests can be so specific to each person, it made me think of how each of us can have our own codes — or languages, if you will — to express ourselves. The post struck me so much that I felt the need to write this poem.  ~ N.I. Nicholson


Dear N.I. Nicholson,

H and I are both honoured by your poem, Code. I read it to him tonight. He thought it was beautiful and gave you a rather unpoetic-14-year-old thumbs-up and the full-faced squinty smile that silently speaks his pride and appreciation. He stood taller at the final lines… and was clearly moved to feel so understood, and further, he was amazed at the mystery that you understood him with such depth.

Thank you for this…
for reaching out…
for making the connection…
and for your gift of words that resonate so powerfully…

I will carry this with me…
as will H
this generous gift…
of text illuminated with soul and heart and treasured gold



Hello Leah:

I’m glad to hear that I was able to reach out to H and you in a meaningful way. I am a semi-regular reader (and lurker) at 30 Days of Autism, and a while back the post about ladybugs and grief stuck in my mind. I knew I wanted to honor his empathy and emotional intelligence with a poem, since the misconception still abounds that we autistics do not have it. Also, what stood out in particular to me was your description of how H uses symbols to represent people he wishes to remember. I believe that each of us has a unique language and lexicon in how we communicate and transmit ideas to ourselves and the world. I tend to think in pictures and moving film, and have unique associations of songs with people or short phrases with concepts (for example, “computer mind and glass shatter heart” to represent what Asperger’s is like for me). Thirdly, I read the post “Inventiveness and Visual/Spacial Thinking” and was happy to read the descriptions of his inventiveness, and some of that informed my poem as well. I was pretty industrious as a child and am gladdened when I observe that in a child or teenager.

Meaning by the speaker and understanding by the receiver are two different things — but it is always a good thing when the two connect. I’m glad this connection was made. H is fortunate to have you as a parent and advocate. I grew up knowing I was “different” and not knowing why. It wasn’t until age 34 that I received my Asperger diagnosis and I spent a lot of time muddling through things myself before then — and as a child and teenager, I found myself wondering what I was doing “wrong”, why I was being bullied, and wondering how I could understand human behavior and overcome my social ineptness. At 36, it is still a journey of self-discovery and I know it will be this way as long as I live — and I welcome such discovery, as is evident that H does through your postings.

In our journeys, it is my hope and prayer that we and others continue to raise awareness and promote understanding of autism. Best of wishes to you.

– N.I. Nicholson


I really must confess – that I tear up each time I read Ian’s poem and our letters to one another. The support that has been offered to me and to H from amazing Autistic adults in the autism community has changed me to my core. My child is embraced and welcomed for who he is in the moment. This lovely exchange between Ian and myself – is just one example of the incredible sensitivity and care that have been extended toward me and my family.

Thank you so much Ian… for reaching out… for making the connection… and for your gift of words that resonate so powerfully…

Please also note: N.I. Nicholson’s beautiful poem and our correspondence are reprinted here with  permission. I encourage you to check out more of his writing and perspectives on Raven’s Wing Poetry.

Screen Shot 2015-06-13 at 10.44.39 AMRelated Posts:
Ladybugs: Autism, Empathy, and Processing Grief
Inventing and visual/spacial thinking: Got Milk??


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, (2013, revised 2015)

Posted in acceptance, Aspergers, Autism, Autistic, Communicate, connections, empathy, poem, poetry | Tagged , , , , , , , , , , , , , , , , , , , , | 2 Comments

Shades of Slander: A Guest Post from Alanna Rose Whitney

The following is a guest post by ASAN Vancouver Chapter Leader, Alanna Rose Whitney.

Shades of Slander
By Alanna Rose Whitney

Okay, so, the Autism Spectrum is legitimately a thing and there are a lot of people out there who just don’t seem to get it.

Some equate the word “spectrum” with the concept of a scale, which is not what that word means. I guess they’re thinking of a line that runs the gamut of shades from red through to violet. Thing is, hearing the word spectrum should instead be conjuring an image of a colour wheel…

ID: Image shows six icons; the apple pinwheel, the adobe colour wheel, red-green-blue and magenta-yellow-cyan Venn diagrams, the ASAN logo and a colour spectrum.

The whole point of using “spectrum” is that it’s an alternative to the out-dated practice of ranking autistics on a line from high to low functioning, verbal to non-verbal, or any other irrelevant criteria.

The very idea of the “Autistic Spectrum” is that our neurotype can’t be defined by a one-dimensional range from black to white with grey in the middle – there are a vast multitude of hues where any given autistic person can be situated on any given day. Much like the wavelengths of light and colour which we all see differently, each autistic person is a variation of the same theme, always in flux, constantly changing and evolving, every individual experience bringing new depth to the chromatic masterpiece that is Autism.

ID: Image shows a rainbow cloud composed of handfuls gulal, or multi-coloured powder dyes that have been thrown into the air by a large group of people who are celebrating Holi (glimpses of these people are visible within the flying colours). Photo credit to ‘White Massif,’ an event management company in Bangalore.

Some fail to grasp the importance of a spectrum that unites us all because they are blinded by a sense of belonging (and simple stubbornness); there are many who don’t want to let go of an identity they finally fit into perfectly. I get that, and anyone is totally free to identify however they want – on their own time…It’s really not cool to dismiss those of us who find functioning labels hurtful.

Anyone who is aware of the harm caused by the negative connotations associated with such language shouldn’t propagate the use of terminology that segregates their own people and promotes ableist ideals.

The following links are good perspectives on why functioning labels are bad:

So, basically, it would be really helpful towards achieving equality, acceptance and equal rights if the entire Autistic Community could agree to ditch the old labels and settle on a new term that’s prismatically, kaleidoscopically inclusive.

That’s the spectrum.

ID: Image shows two circular spectrums. The first is split into eight sections of different colours with the saturation on a gradient towards white in the centre. The second shows the word ‘spectrum’ fit into the aforementioned sections of the same circle. Instead of a gradient, the second image has the letters each in one of eight colours and the space behind them in the opposite colour.

If we separate ourselves into different classifications of autistic, whether that’s using functioning labels or adamantly sticking with “Asperger’s,” it is guaranteed to encourage the kind of ableist behaviour that will allow others to use our differences to maintain a caste system based on their own arbitrary values.

Like I said, people should call themselves whatever they want on their own time, be whoever they want to be… but please, everyone – stop condoning practices which help to put the rest of us into boxes we’ve had no hand in creating and have no desire to be trapped by.

Yes, everyone is entitled to their own identity, but no; being autistic does not give any one person a free pass to trivialize the discrimination that others have experienced. And, F.Y.I., that’s exactly what many are doing when they insist on using functioning labels or person-first language.

ID: This diagram shows the same circular spectrum as in the first of the pair of colour wheels in the previous image. Added to it around the outside of the spectrum in blocky lettering are eight section titles and within each slice of the circle is text that indicates a sliding scale from one state to another (two words or terms with an arrow between them).

The eight sections are as follows:

Emotional Sensitivities = empathetic > stoic

Physical Sensitivities = sensitive > stalwart

Physical Conditions = tough > tender

Motor Skills = dynamic > static

Disability = prolific > expendable

Neurological Conditions = impulsive > compulsive

Communication = articulate > expressive

Filtering & Processing = perceptive > perplexed

Note: The above image is a visual representation of how different hues can be related to different types of autistic qualities. It displays only eight categories with a straightforward scale attached to each which by no means covers every autistic experience. The idea is that any person can simultaneously be in many places within the spectrum and that each point of reference is constantly fluctuating. This is just an example of how the spectrum can be seen.

Autism is neurological. It’s irreversible and immutable.

We are autistic; we are autism.

It’s not possible to separate a person from the essential aspects of their being and personality. Yes, autism can be hard and disabling, but it also has a myriad of multi-faceted benefits. Those two sides of it cannot be separated either.

No one is with their autism anymore than they are with homosexuality or heterosexuality. No one is with their autism anymore than they are with their gender or nationality or religion or political beliefs.

I am an agnostic living with astigmatism. Note the difference.

ID: The last image shows a line of circles that each contain a small section of one of six abstract paintings. Each one is different but all of them show a spectrum of colour.

Everyone is entitled to their own opinion. I can’t disagree with that, but this is about more than how we all take our eggs in the morning; it’s not a debate between scrambled and sunny-side-up (or nothing at all because eggs are sensory minefields) – it’s about a whole diverse group of people who have been oppressed and pigeonholed for centuries.

This is about human rights. This is about respect.

Don’t let prejudice lead to violence. Read and share the #DDoM2015 list of names. Understand why we, as a community, must concur on a palette which encompasses all of our needs.

Together we can shift the winds of change towards acceptance and understanding, and away from analyzing and evaluating the functionality and worth of other human beings like we’re specimens in a lab.

Instead of examining and ranking each person by the potential for remuneration, let’s opt to value each other for the uniquely colourful creatures we are. Humanity is a spectrum, our planet is a spectrum, the whole universe is a spectrum; autism is a spectrum.

Let’s embrace the rainbow.


Alanna’s original post can be found on her Tumblr:


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, Aspergers, Autism, Autistic | Tagged , , , , , , , , , , , , , , , , , , | 6 Comments

The pathologization of interest and curiosity

As I am increasingly connected with people in Disabilities and Autistic communities, I am finding that there were things that in the past sat quite comfortably with me – that now – looking back – make me uncomfortable.

I sometimes feel like I would love to delete a whole bunch of posts, or at the very least reword them. I resist this, because I think it is important to be able to look back and be reminded of the shifts I have made. Almost invariably, those shifts have come from my friendships and connections with Autistic adults and from reading their work (which you can check out on my blog roll to the right ➜).

So ya… I am a work in progress…

One of the things that has been occupying my thoughts for the last while is the idea of intense interests or special interests. I have written about these before here and here and here.

I have stated that the potential for skill development embedded within a self-directed special-interest project is enormous.

I said:

When special interests are supported with opportunity…

…innovation, problem-solving, and positive development are inevitable!

                                               ~L. Kelley~

So… please… bear with me and I promise I will try to pull together the threads of my current thinking on this, because some of it has shifted.

It is important to support H’s interests and I believe that these are the foundational to so much of his development and also the satisfaction he finds in being who he is meant to be.

His interests renew him and soothe him and support his growth.

Deliberately and by design, we give H tonnes of time to spend exploring and pursuing his interests and to talk about them. We are interested and excited and share the excitement of his journey, and I find that I end up learning much about his current passions. Thus, I have an immense and detailed knowledge of things like Star Wars, Star Trek, retro pop culture, horror b films, and Zombies (to name but a few) that I might not otherwise have, and I am currently being schooled in Blacksmithing (and I am not being sarcastic).

H is at ease and is fueled by his interests, which is a part of the reason he is home-schooled, via a distance ed program. We believe it is important to protect his time and resources and to ensure he has the space and pace to delve into his interests and be as self-directed with these as possible. He is more communicative around his interests (as are we all) and his social interactions in the domains where these can be found (ie: skulking in a thrift shop) are relaxed and confident.

I also resist the tendency to formalize the teaching or training around his current interests, as this sort of meddling seems to squelch them. I want him to be at the helm. I would suspect that a typically developing non Autistic teen, who is showing an aptitude with building or making movies or learning to work with metal, might be enrolled in some sort of more formalized instruction. This is not useful at this time for H, though I’m not saying it wont be at some later point.

His learning seems to happen more organically – and holistically – through a total immersion in his current interest.

He is an inventor.

He is a blacksmith…

or a Jedi..

or a Hobbit…

absolutely and completely…

It is beautiful really.

Throughout his childhood, and as he is transitioning to adulthood, I have been unfaltering in my support of my son’s interests (even though at times I’m admittedly in quite over my head). However, it as I am considering this in the context of ableism, that it seems I may have missed something here… and it is dawning on me that this may be something big!

Screen shot 2014-08-25 at 7.09.06 PM

Image Description: Wooden fence with peeling paint frames a large speech bubble. Test reads: ” ‘I am wary of the ableism and ignorance that is present in the pathologization of interest and curiosity. When curiosity and adaptive learning are framed as perseveration or obsession, opportunities for development and fulfillment are inevitably lost.’ Leah Kelley – Thirty Days of Autism”

I have long considered that there is ableism and ignorance in the pathologization of interest and curiosity, when it is framed as perseveration or obsession, and I rejected this stance even before I could talk about it in such terms.

However, I am now seeing an aspect that I hadn’t considered. I am understanding with more depth that I must be wary of less obvious (to me at least) language that pathologizes strengths, such as curiosity and adaptive learning, by framing these in a way that potentially reinforces stigma.

So many times I have unquestioningly adopted language that is prevalent and commonly used to describe the interests of Autistic people – like my son – and I am now wondering if there are elements (once again) that I need to question as potentially disrespectful and problematic.

So here’s the thing… I am considering/reconsidering the use of the word ‘special’ when referring to interests, because I am wondering if that is dismissive and diminutive for this young man who is very rapidly approaching adulthood.

It feels uncomfortable to me… or perhaps more it makes me uneasy. Though I am not certain that term captures what I want to say, uneasy may be the best word I have at this time, though I would like a word that also layers in curiosity and a reluctance to come to a definitive conclusion. An uneasy wondering perhaps… because, if I would not describe the interests of non-Autistic person in such a way… then this is something I feel I need to question.

When I asked H how he felt about the use of the term special interest, he said: “I would rather it just be an interest. I don’t like the way people use the word ‘special’ in all sorts of ways to mean I am different. I think special is another way of saying you’re less than.”

Then before he went back to his current project he added, “That’s all I’ve got.”

Of course, this is personal; it is specific to our situation and reflective of my process and of my son’s response to my wondering. In a way, this is also a microcosm of something bigger: a glimpse into my own continuous journey of letting go and of supporting this wonderful young man on the next part of his development. I am willing to own this, but also want to clarify that I am by no means suggesting that the word ‘special‘ in relation to interest should not be quite comfortably used by others if that suits them. Neither am I suggesting that ‘special’ be added to a list of ableist language that has to be the same for everyone…  but in this context – for my son – and for me – this is clearly the case.

I will continue to support H’s development and the beauty of the intensity of his interests and curiosity that drives his self-directed learning, and to celebrate his explorations and his inventiveness, but I will no longer be referring to these as ‘special‘… at least not until we refer to everybody’s favourite topics, interests, or activities that way, and/or he indicates a shift in his own feelings about this.

I expect I will continue with my uneasy wonderings about things I haven’t closely examined when I have to opportunity to see from a different angle… because so often I discover something I’ve missed, and I have much to learn.


“Blacksmith Joy” Image of H wearing jeans and a Don’t Get Bit zombie t-shirt in a garage strewn with projects and tools. He is holding a 3 lb cross peen hammer and is about to strike the blade of a metal broadsword that is he is holding with his other hand against a work bench. He is looking downward at the project with concentration and confidence.

Please check out this beautiful related post:
Self Care Looks Like “Special Interests”  By Michelle Sutton _________________________________________________

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, Autistic, inventing, language, self-directed learning | Tagged , , , , , , , , , , , , , | 26 Comments