H on Acceptance, Love and Self-Care: #AutismPositivity2015

Acceptance is
knowing people have your back.
Acceptance feels like
it is safe to be yourself.

Self-care is
fidgets in my pocket,
long baths before bed,
knowing when I need time alone,
knowing my limits,
welcoming my intense feelings,
hanging with friends,
and knowing my interests are important.

Love means so many things
I am accepted
Love holds me
Love lets me be me.

#WalkinRed Image description: H wearing a red shirt, chewing his stim necklace, sits relaxed and curled in a large armchair. Text reads: "Walk in RED, Relax in RED, Stim in RED, And be your own true self."

Image description: H wearing a red shirt, chewing his stim necklace, sits relaxed and curled in a large armchair. Text reads: “Walk in RED, Relax in RED, Stim in RED, And be your own true self.”


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, Flash Blog, flashblog, limits | Tagged , , , , , , , , , | 2 Comments

Holding Space as Acceptance, Love, and Self-care: #AutismPositivity2015

AutismPositivity2015button.jpgI think about self-care rather often it seems… though I’ll admit that if I were to define self-care as I thing I do, I don’t actually engage in it quite as regularly as I contemplate it…

I think though, in my typical-atypical-fashion, I might like to twist this topic a bit and try to think about it and explore self-care from another angle.

Perhaps self-care is not just about a thing we do – but it is also very much about the thing(s) we do not do – or do later – or do with support – or do differently… and the ability to do this (or to not) is intrinsically connected with love and acceptance.

Perhaps it is also connected to holding space… for ourselves and for others.

I love the metaphor of holding space. To be honest, I am somewhat mesmerized by what I see in the richness of possibility that exists in the multiple interpretations of this concept.

I am so powerfully drawn to the liminality that I can get quite lost in existential meanderings when I contemplate the idea(s) of holding space…

I suppose… H and I have been indirectly talking about holding space for others as we are processing the loss of my father, who died in early March. The past few months have been a time of intense loss filled with powerful emotions – but as our family is moving forward, I have been considering how we might honour this space that was filled by my father.

I have two other posts on my blog that are about my father (aka Papa). Interestingly, one is about acceptance and love, and the other is about limit setting, so I suppose it is natural for me to be considering him when I am writing of Acceptance, Love, and Self-care.

I think I miss my father so much in part because I miss being wrapped in that feeling of acceptance.  I feel badly for my children that the strength of his acceptance and love is now missing for them… and… I feel badly for myself.

But I am finding my way… and I am seeing how connected acceptance and love are to self-care… and how Papa shared that as such a gift for others in the way he also held space for others.

Holding space is a way of demonstrating acceptance and love – and it is crucial to building a positive sense of self, and self-understanding that is partnered with feeling deserving of self-care.

When we demonstrate that we value other people, they can more fully appreciate, understand, and value who they are… and then they are supported in extending care to themselves and beyond.

Perhaps this is the opposite of shame…

Harrison and Papa Smooch- B+W

Harrison and Papa Smooch

I think perhaps for me one of the most profound things has come to me in my efforts to support H. When we knew things weren’t going well for my father, H was in tears and said, “You know I am really going to miss Papa. You know there’s going to be a hole in my life – there’s going to be an empty space…”

And it was one of those moments when I paused… thinking please let the words come to me.

And I paused another beat…

And then I responded, “You know, H, you’re right – there is going to be a space there – a space where Papa was and now he wont be there – and that is going to leave an empty place in our lives and in our hearts.

But there is something about that space that is important. We have an opportunity to consider that spot – that place he held… and now it’s empty…

We get to decide what to put there.
And part of that is choosing something that will be honouring of Papa.
And when we put our energy into that place I think in that way he lives on.

If we do something that would make him proud or that would make the world a better place, then we use that energy that would have been there – and we make it into something that is good.

I think that is what a legacy is…”

When I think about my father, I am reminded of so many things, but I am perhaps most moved by the way he was deeply, deeply accepting of people… and welcomed us all to the table, or the comfy chair in his study – to just sit quietly, or to bounce around ideas or possibilities, or to argue the finer points of philosophy or politics or the education system… or to get a kick in the butt …or to just get some much-needed words of gentle guidance and encouragement.

He was someone who was completely willing to entertain lofty goals and outrageous dreams… and then help lay down a plan to make the almost impossible a reality.

I choose my steps and move forward in a way that I hope is honouring of my father… now the tables have turned and we are holding space for him.

Bedtime Chat and Cuddles with my Father

Bedtime Chat and Cuddles with my Father

Recently I have been talking to H about holding space in another way…

We were meeting with friends and I asked ahead about how we might best support their son, who is also Autistic and is the same age as H. I wanted to support H and this other young man by understanding what we might need to know about how he communicates and how best to connect.

The response of this family was that they appreciated being asked and suggested that people always do better when they are met with an approach of holding space.

This modeling and these opportunities for H to be aware of and honour the support needs of others, also has embedded within it the powerful message that his own needs are valid. It is empowering to for H to understand ways that we respectfully honour limits and pay attention to self-care for ourselves and for our friends and loved ones.

We are honouring space… place… pace… with this message:

You matter and we acknowledge you and make space for you – we hold it – we make sure others see you there – we give you room to be involved at whatever level is working for you in the moment – and whatever that may be – we accept and encourage it…

And if it changes… if it is different later – if you need less – or if you find you are seeking more – we don’t hold what you needed before against you… and we don’t use it as a measure of what you might or might not need in the future.

The message is: I accept you in this moment exactly as you are…

You are welcomed…

I see you… you are whole…

You are enough…

I hold space for you…

I watched my son with this other young man. I witnessed his capacity for acceptance  – and for holding space in a way that seemed so like his Papa.

I think perhaps this is a bit of his legacy. My father, H’s Papa, would be proud.

Acceptance, Love, and Self-Care 6

Although acceptance and love provide self-care and other-care in and of themselves… their very existence sets the stage for the honouring of self. Acceptance and love hold space in a way that welcomes everyone to the table… at their own pace… in their own time… and in their own way… authentically honouring each person and their experience. When we demonstrate that we value other people, they can more fully appreciate, understand, and value who they are. Perhaps this is the opposite of shame…

Though his absence is deeply felt, my father’s default to love and acceptance helps me to now hold space for myself and H and others. Papa’s legacy is found in the way H and I move through life now, and holding space for him is a way of caring for others and for ourselves…

And I am grateful…


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, Autism Positivity, Autistic, Flash Blog, flashblog, Grief, letting go, limits, Love and Self-Care, relationships, self-advocacy | Tagged , , , , , , , , , , , , | 6 Comments

#AutismPositivity2015: Are you in???

Announcing The Fourth Annual Autism Positivity Flashblog

May 15 th, 2015

April 2015 has been a busy month. There are so many people creating new projects and participating in posAutive events, expressing or amplifying the important perspectives of Autistic people, and celebrating Autistic pride and culture. The #WalkinRed15 event now also extended to May 15th  is a wonderful example of this and is a meaningful actionAutismPositivity2015button.jpg for Autism Acceptance Month!

As fantastic as all of these events are, we understand the potential overwhelm of the demands during this time of year, and how the pressures and stresses of participating in many important Autism Acceptance events can be a drain upon resources.

Frankly – we were feeling it too… and were low on spoons… and so in consideration of this our team has shifted the date.

We think this – in itself – is a lovely metaphor that embodies self-care and acceptance and self-understanding and accommodation in all the best ways… for many of us…

Sometimes we can’t do all the things…

Sometimes this is beyond our control…

But in this instance – and with this event – we can totally break the time-space continuum and create the additional time so many of us need.

We can make an accommodation to suit the needs of our planning and moderation team – and we fully anticipate that this will suit others as well.

So this year the theme is:
“Acceptance, Love and Self-care: #AutismPositivity2015″

AutismPositivity2015button.jpgWe want to know what you are celebrating about yourself, your Autistic family, friend or loved one or what you want to celebrate about Autistic community – and we think it is empowering to share the posAutive ways that we respectfully honour limits and pay attention to self-care for ourselves and for our friends and loved ones.

Let’s start a “tsunami” of positivity to honor Autistic pride, acceptance and love!

Join us in celebrating Autism Acceptance and we will once again flood Google with positive messages about Autism. 

We will have more information detailing how to submit and grab the button over the next few days… so be sure to check back :)


For the last three years, hundreds of bloggers have come together in a show of support and solidarity in response to negative stigma. The posts that have flooded in from all over the world have been a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year again invite you to participate in an intentional celebration of posAutivity and Acceptance within our diverse communities.

We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and those who blog about autism to create a message of support, wisdom, hope, and pride to this year’s flashblog by posting to:


To participate:

1. Publish your post on May 15th in the following title format: “[Your Blog] Acceptance. Love, and Self-care: #AutismPositivity2015″

2. Share your post on Twitter, Facebook, and any other social media site using the hashtag #AutismPositivity2015

3. Add your link to the Autism Positivity website (submit here or above) and grab the badge from the page tab above.

4. Share/reblog this message to your blog, page, etc.


If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on:


Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/




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, Autism Positivity, Autistic, Flash Blog, flashblog, Space and Pace | Tagged , , , , , , , | 2 Comments

On assigning friendship…

You mission… should you choose to accept it… will be to be a friend to this other child in your class…

No – really…

This will be really great!

I will give you extrinsic rewards and reinforcements for being a good friend to this child and it will make me feel good as the teacher to know that this child is being included… and you will feel good for helping someone who needs it…

Nevermind that this is stigmatizing…

And… um… let’s just agree to overlook that it reinforces the underlying message that this other child should be pitied and doesn’t merit being included as they are – as our equal – as a human being  – but instead – as a project…

And… um… maybe we can also overlook that somewhere in there as your teacher I am reinforcing the message that this child with a disability is not worthy of your friendship without my meddling and your desire for my approval…

Seriously though…

When kids are assigned to other kids – it is not friendship.

The act of assignment runs counter to all the qualities that make a friendship a thing. It sends the message that this person isn’t worthy of friendship without the reward of extrinsic approval of being a mini helpery person or do-gooder. And that message is ableist and I think too, it can make it more difficult and interfere with the process of establishing authentic relationships.

It sets up the relationship as unbalanced and unequal right from the start, but there are ways to structure and model things in the classroom (and on the playground – and in our lives) to create opportunities for kids to develop authentic friendships and positive relationships without it being an assignment.

And too… it needs to be considered that pushing children to connect or to be social on our agenda and timeline – is not honouring – some children are not ready… and some might need a break… or…

In the early primary grades, H used to run up the slide as soon as he got on the playground (which was against the rules) so he would get ‘in trouble’ and then be sent to the Student Support room where he could relax building with Lego. He didn’t want to be in the throng and he needed a quiet break to regroup so he could be ready to again be in the classroom (which is a highly demanding and social environment). It would have been nice if a quiet place to renew was an option without needing to ‘break the rules’ and if educators could understand more widely and with greater depth that recess and the playground are not a break for many, many kids.

H and Fallon

H and his younger friend Fallon

Another thing to consider when thinking about the way H is developing friendships and interest in being increasingly social is that it is just fine if he gets on better with adults. If he doesn’t click with a lot of 16-year-olds – the reality is that he will only be 16 for a year, but he will be an adult for a long, long time.

At times, people can be limited in thinking about this and by the way this is framed with the pervasive bias that same age relationships are somehow superior. It seems many systems are stuck in this paradigm and feel they are doing right if they are forcing Autistic students (and students with other disabilities) to be squeezed into it.

My son is benefiting tremendously from connecting with adults and older teens – and also from cultivating friendships with much younger kids. Thinking about himself in a mentoring position is incredibly powerful for building an image of himself as giving and capable.

These friendships and connections are meaningful and REAL.

H and J in the Tower of Terror

It’s a Giraffe Party in the Tower of Terror

Related posts:
Judy Endow on Assigned Friends Outcome

10940534_335122800031800_8878179744566502263_nAnd while you’re at it… check out Giraffe Party on Facebook


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, Friends | Tagged , , | 5 Comments

Not on my wall… Boundaries and Entitlement

Hey You - getoffofmywallLately I have seen some parents suggesting that their “Lighting it up Blue” is different – because they have their own kind of family meaning or tradition for it and do not associate it at all with Autism Speaks.

When these people hear that #LIUB is uncomfortable, and that it is considered disrespectful by many Autistic people and those who support them, they seem to defend their position by saying things like: ‘It is okay – we don’t all have to agree… we are still working toward the same goals and I am supporting my child.’

The thing is… this is a little different from being ‘not in agreement…’

For one thing this is blatantly disregarding the voices and perspectives of many, many Autistic people. In fact, not one of my Autistic friends is in favour of “Lighting it up Blue.”

Think about it… this dismissive disregard is identical to the stance that Autism Speaks takes when they exclude the voices and perspectives of Autistic adults.

So saying things like, ‘We are all entitled to our opinions and this is simply a difference…’ or  ‘I am doing this my way because _____’  is actually ignoring and, through this action, even silencing the voices of Autistic people.

I have even seen some parents come into the space of an Autistic person, someone with lived experience – and when it has been explained that “Light it up Blue” and “Puzzle Pieces” and “Awareness” are offensive and even triggering, these same people have continued to defend their position.

What if instead of insisting their right to their opinion – they leaned into the discomfort of perhaps being wrong. It would be interesting to see what would happen if they tried to understand the impact of negative rhetoric and how this is embodied in blue lights and puzzles as a metaphor for this hateful cure mentality.

Because no matter what… these blue lights cannot be separated from Autism Speaks in the eyes of someone like my 16-year-old son… and no matter what a non Autistic person may think or feel about this… the perspective of the Autistic person should freakin’ trump it all.

Autism Speaks markets the light bulbs, and they profit from them – just as they profit from saying my son is a tragedy that burdens his family and desperately needs to be cured of his neurology.

Those blue lights are a huge advertizing campaign for Autism Speaks, and they are the embodiment of fear and stigma, wrapped in the hateful blue cloak of awareness.

They are disheartening to see… a beacon of shining blue that proclaims to Autistic people – we are aware of you and you are not enoughyou need to be fixed… but your humanity is so lacking we won’t even include you in the conversation.

This is not about me – or other parents… it is simply about listening and being responsive to what Autistic people are saying about what is best for them. Perhaps I can consider it like this… if someone in another culture told me something I was doing was offensive to them – I would stop. I would not try to justify my position; this is pretty much the same situation.

I listen to Autistic adults because they are living the experience of being Autistic, and they have understanding and insights that are far more useful than any book or program I have seen created by one of my professional colleagues.

I listen to Autistic adults because they are the best guides for me in supporting my actions with my son and in helping him to grow up into a proud and well-adjusted Autistic man.

I listen to and then amplify the voices and perspectives of Autistic people to support the roar of their disdain, not just because it is the right thing to do… but because this is how we will create the world as it should be.

Get off my wall


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, being wrong, Boycott Autism Speaks | Tagged , , , | 12 Comments

Pathologizing Kitty…

Pathologizing KittyI’ve been considering that we don’t impose the dog paradigm of communication, where tail wagging means ‘I am happy or excited’ and ‘please give me more…’ on the cats we know and love…

It is interesting that we realize the difference and read the cat’s message of intent in this same physical response as, ‘STAHP that or else!!’ rather than pathologizing the kittyism as poorly executed dog communication…

Perhaps this observation could be teased out with the logical progression of deductive reasoning; the assumption or inference would be that humans possess the ability to learn to understand and interpret communication that presents in a wide variety of ways.

I wonder why we so often fail to apply that understanding to other humans…
It seems unnatural…



Suspiciously eyes social constructs…

Non-existent tail swishes air in warning…


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, Communicate, language | Tagged , , , | 8 Comments

Autism and Processing Grief: Feelings Change

This post is a follow-up to https://30daysofautism.wordpress.com/2011/12/29/ladybugs-autism-empathy-and-processing-grief/  and also a very late response to a comment left there. It was started long ago… but due to some things we are dealing with as a family now… it has become relevant to post…

I know now that H feels things more deeply and intensely than many people seem to do – so I have sometimes wondered if he needs to almost shut down or close off the feelings when they become too much.

I have observed that his feelings can be as strong as, and almost seem like an extension of, his heightened sensory system. When he listens to music – he can hear all the sounds at the same time. When he gets a new Lego set – he opens all of the little bags with the sorted pieces – and spreads all of them on the table. I’ve seen him do this. When he creates with his Lego – he can see all of the pieces at once and doesn’t need to search for a piece the way I would.

He sees differently.

He hears differently.

It seems his feelings are just as powerful – and I imagine that can be scary at times.  H needs support so that he knows we are there to help him handle those difficult and intense emotions, and that it is safe to feel those strong feelings. We have also worked hard to support him in learning and experiencing that feelings change – so that in the middle of an emotional storm – he has some understanding that these feelings will not last forever.

When our neighbour Mrs. L died, I took H to her memorial. Craig and I thought it was very important that he have the opportunity to attend and be a part of her ending of life ceremony. It was good for him to see that others were feeling the same way he was – and he also had the opportunity to give her family a copy of the story, Mrs. L and the Ladybug, that I had written to support him in understanding and processing this loss.

It just so happens that this same day – the new Star Trek movie was to premier. I told H that we would be going – but I need to explain here that we did not do this to ‘cheer him up’.

Our intent was different.

As those of you who are regular readers will know,  H is a big fan of sci-fi fantasy, like me (right now we are both counting the days until the new Star Wars film premiers in December 2015), so he was really, REALLY looking forward to the Star Trek movie.

Taking in the movie was fun and exciting – and this happened on the same day that something sad and difficult happened. H asked if he could go dressed as Captain Kirk – complete with TOS phaser replica… and of course I agreed. He held his own with the other fans in the pre-movie line trivia testing that spontaneously became a thing – and – to be honest – his TOS knowledge raised a few impressed eyebrows.

Experiencing these two events close together supported H in understanding that feelings change – even very intense feelings. I wanted to nurture this idea to help to build safety for the pain and intensity when he is in the middle of it all, and to strengthen his understanding that feelings are things that we move through.


This is a slide from H’s Dear Teacher presentation. Black text on a green background reads: “Sometimes feelings can really get me down especially when a loved one passes away. The feelings I have are as strong as my listening. I feel things very deeply. I need a teacher to know that I need extra support with my feelings because they are so strong they can be scary. I need it to be safe to feel those strong things and know that people will help me.” Written by H.

I am certain that there is absolutely nothing wrong with the intensity that this young man experiences with his emotions, but it is an intensity that can be frightening. So giving him the tools to deepen his understanding about his own processing is something I want to do as a parent.

I want him to welcome his tears – and to feel things to his soul – and to know that he is safe and supported in feeling those deep things… and that there is a way through. I want him to understand that whether easy or difficult… a feeling is something he can safely and intensely experience…

And just like he will encounter other emotions, he will encounter his sadness again… as he continues to process loss or grief…

It comes and goes… and that is okay…


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, Grief | Tagged , , , , , , , , | 9 Comments

“No More”: ASAN Vancouver Disability Day of Mourning

2015 Day of Mourning. Emma Van der Klift reading a poem by Mel Baggs

2015 Day of Mourning. Emma Van der Klift reading a poem by Mel Baggs

The following is a guest post, composed of the speech written by Norman Kunc and Emma Van der Klift, and spoken by Norman Kunc,  for the ASAN 2015 Disability Day of Mourning. The vigil was held in the Woodlands Memorial Gardens in New Westminster, BC (see link below). Thank you, Norm and Emma, for generously allowing your powerful words to be shared to a wider audience.


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.

“We are here today, not just to remember the lives that have been lost, but to remind the world of the value of these lives. And, in coming here today, we are called upon to bear witness to those lives.

A witness is, of course, someone who attests that something actually did happen and in some cases, like the situation we see in our society today, attests that something is continuing to happen. Today, in sync with many others in many other places worldwide, we come together in this vigil to remember and mourn the more than 75 disabled children and adults that have been murdered in the last 5 years, murdered simply because they were disabled.

We mourn the unthinkable tragedy and unconscionable betrayal that these disabled persons were murdered not by some random criminal or stranger, but by a parent or caregiver, the very people who were supposed to love and protect them. Many of these murders were rationalized by their perpetrators with protestations of love.

Our society seems to take a lighter view on the culpability of those who murder with so-called altruistic motives. Our court systems also take a lighter view, and this is evidenced in the reduced sentences that those caregivers who kill disabled people receive. Perhaps this is unsurprising, given the way disabled lives are generally devalued. There is a pervasive sense that life with a disability is not worth living.

We are here today as witnesses to contradict that view.

Disabled lives are valuable – not only to the person who has the disability, but to society itself. We are capable of making contributions and we do not view our lives as lesser or tragic. In 1994, on the day that Tracy Latimer was murdered by her father, and in the ensuing months as I listened to the media and an endless round of water-cooler conversations on the topic, I was struck with the overwhelming recognition that in the eyes of the public, my life was viewed as less valuable. Tragic, even. I am here to say that these murders are the real tragedy.

My life is not tragic.

Does disability involve frustration and difficulty? Yes. Are some of those difficulties and frustrations because of the effects of disability? Yes. But the most difficult and frustrating aspects of being disabled are actually the attitudes and actions of so many non-disabled people.

Every person we honour here today was a real, living human being. Not an abstraction or a statistic. These were children with interests and joys and sorrows. They were human beings in the fullest sense of the world. None of them deserved the betrayal of death at the very hands of the people they believed were there to protect and love them. Make no mistake – even though you may have been told that these murders were acts of love, many of these individuals were murdered in vicious and cruel ways.

And even though you may have been told that these murders were the fault of a service system that offered inadequate support for families, many of these families had actually refused support. Is it true that families should receive good and adequate support from the service system? Of course. I spend much of my time advocating for those supports. However, when we conflate lack of support and murder, we effectively create both the rationale for these murders, and set the stage for more of them.When society says that the murders of disabled people is an understandable response to lack of service, when society says that we must not judge unless we have walked a mile in the shoes of the murdering parent, we inadvertently condone these acts. And we implicitly agree that disabled people are intolerable burdens and by default, that the world would be better without us.

And so, here we are. Witnesses. With and without disabilities. Here to say No More. To join together, with our allies, to state strongly, fiercely, loudly that the lives of disabled people have value and that no one has the right to take that life, regardless of the stated rationale.”

2015 Day of Mourning. Norman Kunc, reading his speech.

2015 Day of Mourning. Norman Kunc, reading the above speech.



On H’s visit to Woodlands Memorial Garden in 2012 with links to some of its horrific history: https://30daysofautism.wordpress.com/2012/04/02/ghosts-of-the-asylum-in-spring-a-look-back-at-exclusion-and-abuse/

Amythest Schaber’s Day of Mourning speech (video): https://www.youtube.com/watch?v=XZgg43OiYGw

ASAN Vancouver on facebook: https://www.facebook.com/asanvan

ASAN Chapter Leader, Alanna Rose Whitneys, Day of Mourning speech and reading of the names of the Victims (trigger warning – for age of victim and how they were murdered) (video): https://www.youtube.com/watch?v=wCP3Kq31P3U  And an accounting of the day with photos and text on Tumblr: http://alannarosewhitney.tumblr.com/post/113290787019/disability-day-of-mourning-2015-remembering


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, ASAN, Autism, Death, Norman Kunc | Tagged , , , , , , , , , , , , , , | Leave a comment

Crossing the line: The Danger of Compliance

As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”


The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.

It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.

She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some of their behaviors were deemed “weird.” But there is a complexity to the issues that are relevant here and that seem to arise at the intersection of ableism, racism and poverty.  Bernice shared, “Because we are poor, brown, and my children are autistic it was presumed that we were incompetent and unable to make the best decisions for our children.”

In response her husband and boys moved back to Idaho where they had a better system and support, while Bernice remained behind to finish her education. Although her university program has supported her in spending as much time as possible with her family, she and her family have been forced to endure a heart wrenching separation. In March, Bernice will be returning to Nebraska for the final haul. She expects it will be a full year, maybe 14 mo. It’s been a rough two years…

Bernice’s allegorical tale below, is a beautiful illustration which provides a nuanced insight into the very real concerns and threats she and her family are facing, because of the overreaching and inaccurate assumptions that are made about the appropriateness of ABA and compliance based training. There are other options to the so-called evidence based intervention that has been pushed upon this family: options that honour the child and what their behaviour and reactions reveal about their experience  – options that build trust and connections and relationship – options that accept a child fully at the very place they are at, and then build upon their strengths in natural and healthy developmentally appropriate ways of learning for any child. When a family chooses these less pathologizing methods to support and nurture their child – they should not be faced with the decisions that this family has had to make.


The further adventures of Danger Baby and Destructo Boy

By Bernice Olivas

Introducing the Normalizer!

After Danger Baby and Destructo Boy defeated the evil corporate babies who were hell bent on baby proofing the world they looked forward to a break or maybe a vacation. Alas, that was not to be!

Little did they know that the CPSO (Child Protection System overlords) was plotting against them; CPSO goal was to “fix” our awesomely autistic duo through I-BITE (Intensive Behavior intervention torture enforcement). They decided that it was not okay for the Duo to get naked, or not wear socks in the winter, or be too loud, or too autistically awesome. Instead, they must conform to the standards set by CPSO. They must wear clothes ALL the time, and learn to speak like “normal” people. They must think, act, and feel just like everyone else all the time.

Our duo was in greatest danger ever so they told the Momlady and Daddyman about their secret identity as superheroes and the whole family vowed to fight CPSO together. Momlady tried to thwart them with paperwork and the power of education and Daddyman did everything he could to scare them away. Alas the CPSO was too strong and they have agents working everywhere; the park, the school, and even the grocery store. Whenever the duo behaved “un-normal” CPSO was called and even though they could find no reason to find fault with the family they used the calls as a reason to call in the Normalizer. Outwardly the Normalizer looked like a twenty-something “case manager” on one of her very first cases but she had all the powers of the system overlords at her fingertips and she was out to get the autistic duo. No child would ever be happily naked on her watch!

The Normalizer: “You WILL take our HELP or we will take the awesomely Autistic Duo away and “reeducate” them. if these behaviors continue then the system will take them away forever.”

MomLady: “And if we refuse”

The Normalizer: “The act of refusing our help puts you on our “at risk” list and we no longer need your permission.”

Momlady: “What can we do to make you happy?”

The Normalizer: “You must go to a support group and listen to other parents talk about their autistic kids as if autism is an alien who snatched their baby. You have a rotten attitude about all of this, what kind of parents let their kids be so different! And this Daddyman at home thing, it is weird—fix it! Mommies should stay at home. When Daddy’s do it it’s just too different. And stop being so brown and poor. We don’t like that. And the boys will submit to I-BITE. Mwahahahah!”

Momlady: “But that will change the awesomely autistic duo into completely different people and teach them to feel bad about being different!”

The Normalizer: “EXACTLY!”

Momlady: “But that’s so wrong.”

The Normalizer: “Normal is never wrong! It’s always right just because it is normal!”

Momlady: “Okay. We’ll do what you want.”

Bur secretly the family devised Operation Houdini. Daddyman would fly home to Idaho where CPSO was powerless in the face of the fSS (family support system) and the Momlady would stay behind and learn the secret ways of the CPSO and continue to work on mastering the power of the PhD so that the awesomely autistic duo would never be in danger again!

Phase one of Operation Houdini complete… to be continued.


And finally there is Bernice’s gut wrenching essay, which quite took my breath away, and left me weeping and struggling to relax the tell-tale lump of emotion in my throat. Bernice’s essay examines the pressure for compliance on multiple levels and shines a light on threats and dangers that arise when systems do not support the needs of those they propose to serve. This essay is a compelling work, though due to its length is not printed in its entirety. (A PFD of the entire essay is linked below.)


I don’t want to miss you

By Bernice Olivas

“But I don’t want to miss my Mommy,” My son Gareth says. He just turned eight this year. His eyes are wide and his mini Mohawk has begun to grow out. He looked like such a big boy when he got the Mohawk, he doesn’t look like a big boy anymore. He looks like a baby. He is crying and grasping my fingers. “No Idaho, please. Want mommy.”

“I’m sorry baby, but we are all done with Nebraska. It is time to go home to Idaho. I wish I could go with you but I have to stay here. Mommy will see you in June. Mommy loves you so much.”

“But it doesn’t make any sense!” He is angry now and I can’t breathe because if I breathe I’ll cry, and I can’t cry. I can’t cry. “No baby, it doesn’t.” I hold him tight one last time and then his father takes him from me. Our eyes meet and he reaches out to me with this other hand, we brush fingertips but do not hold on. We can’t hold on now, not if we’re going to do this thing,

They leave. I still don’t cry, not when they pull out of the drive, not when I can’t see them anymore, not as I tick off the miles in my head. I clean and pack and make plans and in my head I am keeping time. They are an hour away, three hours, and then six hours. It is February 18th, coincidently the day before I turn 32, and I am keeping time in my head until my children cross the state line. Once they are out of Nebraska I can feel safe. When they are somewhere in Wyoming I sit on the bathroom floor, lights off, and in a time honored tradition of women and mothers everywhere I shove a towel into my face and wail. I let it catch the tears and the keening noise I am making, because even alone I cannot unlearn that this kind pain should remain hidden.


What I don’t tell my sons and what they must never know is this


You are not safe in Nebraska my beautiful, autistic boys. Your autism baffles teachers, disturbs neighbors—your autism is too noisy, too messy, and often too naked. The way you flap and spin, the way you react to too much or too little sensory stimulus and your unrestrained, unexpected laughter are read as “unacceptable behaviors” here. Our CPS case manager does not speak body. She cannot hear I love you in a gentle head-butt, or decipher what you really mean when you repeat back commercials or movie scripts. She doesn’t understand and she thinks that your “behavior” is an indication of my neglect or abuse. She thinks that because I don’t make you wear socks with your shoes, not even on snow days, that I am neglecting you. She will not hear me when I try to explain that socks makes you itch and ache and fret and want to be free of the weight on your skin. All she sees is you misbehaving, getting undressed, not speaking when spoken to. That, my beautiful son, is not OKAY here. You are not okay here. So I must send you somewhere safe. Somewhere you will be okay.

It is so not-okay that total strangers accused us of neglect when they saw you get undressed at the park and when they see you undressed on our balcony. It’s so not-okay, that people at your school accuse us of neglect for not forcing you to wear socks even though they have witnessed the way socks make you scream, scream, scream and make you tear them off or scrabble madly at your shoes until you hyperventilate and curl into a baby ball and keen. It is so not-okay that our case manager, even though she herself has admitted that there is no evidence that we are bad parents, bad people, has said, “You need to take our help because if these behaviors do not stop your kids will end up in the system.”

BerniceOlivas4.jpgAnd what she meant, my sons, is that I need to allow them to send an analyst to our home and your school to observe you, to find the problems with you, and then create a program to “fix you”. The state wants to teach you to comply. They will give you a treat (a reinforcer) when you are good and physically walk you through the motions of obedience when you say no. Your right to say “NO” will be trained out of you. It does not occur to them how naked and vulnerable a person is without their “NO”. Wars have been fought for the right to say “NO”. But I am supposed to give yours away, let them train it out of you for the sake of my convenience, for the sake of “good days” at school, and so that complete strangers are not made uncomfortable by your “strangeness”. NO! No! No! You are both wonderful just the way you are. But if we do not comply “voluntarily”, if I refuse their help we will be relabeled as “at risk” and I will no longer have the right to refuse their help. The threat is clear, what she meant was, if we didn’t comply she would take you away from us.

It is also not okay that we are poor and that your father is the stay at home parent. Our case manager keeps calling your daddy “unemployed” and says to me that he is the problem. He is too aggressive, to over protective, his attitude is too negative. Daddy calls her out for talking down to you. Daddy steps between you and her when she ignores your boundaries. Daddy scares her. She says he needs to go back to work. If he does the state will pay for daycare. When I push back, ask her to consider the fact that she might be overstepping some lines, she says that “everything happens for a reason” we should be more open to learning from her and the situation. She is in her early twenties, we are her second or third case and by her own admission she’s “never worked with an autistic family” and “doesn’t know anything about autism” but she assures us that she’ll “Google” it. In Nebraska your life is in the hands of a person who has spent less than three hours in your company, who has no training in autism. In Nebraska, the case managers, the anonymous callers, the school social workers are all considered the experts and the parents are treated like the enemy if we don’t comply.

So if I don’t let you go, right now, with no explanation, without saying goodbye to your friends and your teachers I could lose you. I could lose you to a system that sees you as a broken unit to be fixed or replaced, a system with a vile history of taking children out of their homes and losing them, as if they were mittens, or pen caps, or old receipts, or rubber bands.

I can’t tell you any of this because I cannot stomach the thought that you might hear, your fault, this is your fault. I know I will answer to this later when you are almost-men and you call me to account for my mistakes, as all children do. I hope you understand. I hope you don’t see my sending you away as cowardice. I hope you don’t see my staying behind to finish my PhD as abandonment. I hope you understand why all I can say is, “I don’t want to miss Gareth and Osiris either, but we are all done with Nebraska, it’s time to go home to Idaho.”


At some point after they are gone I fall asleep in the couch, clutching their comforter. The next day I go school. I am a Doctoral student at UNL, a member of the English department. I teach college students and work in the writing center. I hold a Master’s degree. According to the 2012 U.S. census just over 10.3% of the population holds a comparable degree. Only 4.1% percent of Latinos hold the same degree. Those numbers get smaller as my gender and Native heritage are taken into account. I am first in my family, on either side, to obtain a college degree, the first to obtain the Masters, the first to be accepted into a doctoral program. My Master’s Thesis was on the subject of Autism. One of the guiding Professors in my research was an expert in the area of Severe Disabilities and Autism Spectrum Disorders at the Barkley Memorial Center, University of Nebraska. My education does not protect my children. A case manager in Nebraska is required to hold a B.A but not required to specialize in social work, family services, or education. No one I interact with in child protection services specializes in Severe Disabilities or Autism Spectrum Disorders or special education. That day I teach, I run office hours, and I smile. I come home to an empty house and wonder again how all of this happened, and why…

Please read Bernice’s complete essay, available as a PDF here: I Don’t Want to Miss You – Bernice Olivas


Related Links:

This is what compliance training looks like:

Here are some concerns about compliance training:

And here is what happens when compliance training goes terribly terrible wrong:



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 ABA, ableism, Autism, Behaviour, Compliance, family, Intervention, Parent | Tagged , , , , , , , , | 22 Comments

And Then You Cry ‘Victim’

When Autistic adults are ignored or gaslighted or tone policed and told they “shouldn’t be so angry” or they are “not like my child,” then the opportunity to learn from the real autism experts is missed.

It may not be comfortable to lean in – but do it anyway – because the change we want to see in the world begins within… <3


When you’re told by those
you claim to be advocating for
that you’re doing it wrong
and then you cry ‘victim’
you’re not listening…

When you talk of acceptance
and why this is what you want
for your Autistic child
and then you don’t extend that
to others who share their neurology
you’re missing the point…

When you say that you want
to change the world
but turn away in discomfort
from the things YOU could do differently
opportunity is lost…

L. Kelley, February 15, 2015


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, Advocacy, advocate, Autism, listening, poem, poetry | Tagged , , , , , , , , , , , | 4 Comments