On the Reformation of ABA

Back in December (2025), I encountered a content creator who appears to be a twenty-ish autistic advocate. Much like myself at their age, they're passionate about autism acceptance and various related topics. Unfortunately, one of those topics is ABA reform. To create a new, modern ABA that is helpful to autistic people. 

Over the years, I've encountered a few autistic advocates for ABA, who think that ABA helped them and/or that the ABA industry can be changed for the better and not be abusive. I don't know if I will change any minds, but I want them to read and think.

Let me put it plainly: I don't think it's possible to reform ABA or its industry. Even if there were any potential positives to ABA, I think that it's impossible to separate it from the harmful aspects. Other people have covered these topics more extensively that I possibly could, so I'm including some links that I hope are useful at the end of this post. 

But let me approach this differently: ABA is not backed by science. 

Yes, there are a lot of studies that argue that ABA works, but they do not meet the criteria to be considered gold standard science.

To summarize, to be considered good science, a study needs to have a clear research question, be designed appropriately with large enough sample size and control groups, and be reproduced by other scientists. It also needs to be transparent about any conflict of interests, sources of funding, methods used, the data, and be honest about the limitations of the study. It then needs to checked by peer review, in other words, be reviewed by other scientists not related to the study. 

Double-blind studies are often the best methods to reduce biased results in studies, but I do admit it is very hard to do in social sciences. It also takes a lot of time and resources (including money) to do good studies. 

So what I focus on is transparency, sample size, and limitations of study.  

There has been increased criticism to undisclosed conflicts of interest in pro-ABA research studies, as well as criticism over the ethics. I'm not going to go into these points, but it is not a good indication of reliability if researchers do not fully disclose their conflicts of interest. It gives doubt to their biases and to their results. If they are not being honest about their conflicts of interest, it is possible that they are not being honest about other things in their research.

My particular focus in on the sample size and limitations. From what I understand, a larger sample study gives better statistically significant results; in other words, it makes it less likely that the results are flukes. Currently, there are very little large scale studies that support ABA. In fact, the large study conducted by the U.S. Department of Defense reported that most participants saw no improvements over a year of ABA. 

Nevertheless, in order to have significant results, a study needs a large sample size and at least one control group. In other words, there needs to be a group that the study compares against. So if there is a group that receiving ABA instruction to complete a task, there needs to be a group that is receiving non-ABA instruction to complete the same task. 

In my idealized world, a study would, at least, have both autistic and non-autistic groups, divided into those receiving ABA instruction, and those not. So four study groups of participants and instructors. Instructors would be blind as to what group they are instructing and how they are instructing, and participants would be blind as to whether they are receiving ABA or not-ABA instruction. So it would be a double-blind study. This way the researchers running the study would not have their biases distort the data. (There are probably other factors concerning a large scale study that I'm not mentioning, this is just a simplified scenario.) 

I will admit, it is difficult to secure the funding to run such a large study, however necessary in order to have significantly reliable data. Still, from what I have seen of pro-ABA studies, very few of them have a large sample size, do not have a control group, and present very weak data to their efficiency. Most studies set out to prove that they can teach a skill or task using ABA.  

Which brings me to limitations. There's always going to be limitations in studies; there's only so much one can do with whatever funding secured. What often gets omitted is whether the task or skill being taught to participants is something they want or need to learn, whether they retain what they learn in the long term (in years, not months), and whether there are negative effects of the instruction they received. 

What good is a treatment or therapy if it causes more harm than good? The pro-ABA studies do not look at any future results, both good and bad. They do not study whether receiving the ABA instruction was beneficial or not for the participants. The only studies that do indicate that ABA causes PTSD in autistic people. 

Which, of course, I expect pro-ABA advocates to circle back and say that is why they want to reform the industry. But what good is reforming the industry when the practice itself is the harm? Especially when there is very weak data indicating that it does any good in the first place. 

I don't expect to completely change pro-ABA advocates' minds. But, if you truly believe that ABA is beneficial and the industry can be reformed, I ask for you to advocate for better studies. The current data is very weak and inconclusive, while the bad behaviour of researchers undermine their results. And while I don't believe ABA will ever be beneficial to anyone, I do think that autistic people deserve to have good science-based evidence to back their advocacy. So if you think that ABA is valuable, then having good scientific studies can only strengthen your advocacy. 

Personally, I think that it is more beneficial to focus on autistic led goals, such expanding healthcare coverage to things other than ABA and providing individual-directed support across the lifespan. To putting research into supports and services that do not cause harm, and instead seeks to repair harm done. 

Other References

The Troubled History of ABA Therapy

Amythest Schaber's ABA masterpost

America’s Most Popular Autism Therapy May Not Work — and May Seriously Harm Patients’ Mental Health

5 Important Reasons Even New ABA is Problematic

A4A Why We Oppose ABA in All Forms

Behavioural Modification Therapy Does Not Work

The Great Big ABA Opposition Resource List

Why No Autistic Child Should Be in ABA Therapy

Wibbly Wobbly Thoughts

I started writing this for ASDay 2021. I got mostly done and then lost my train of thought. Picking it again for ASDay 2022.

I keep trying to come up with something to write about, and I start down a good idea, and then get distracted or the inspiration fizzles out. Sometimes I feel despair, because a lot of the topics that come up are the same topics I've written about years ago. Sure, I could write about the exact circumstances of the issue, how it affects people. Use my hard-earned degree to form some sort of argument. But I also just want to write about other things. 

I started to write an open letter to my government about how the pandemic has impacted me, specifically financially. It was going to be an anecdote to support the argument for Universal Basic Income. I was going to compare my life before the pandemic, and now, with how instead of worrying about support coming in from different areas with amounts that adjust from week to week, I can make financial decisions and be confident about being able to afford basic needs and make financial decisions about repairing or replacing items, about being able to take time off work when sick or injured. Because I'm currently on unemployment, and that pays more than ODSP and my job. 

However, I also wanted to write about corsets, and history bounding. The other year, I wrote my thesis about accessibility at autism conferences, and then I went to a costuming convention where a lot of the attendees were disabled. 'If only I had known sooner,' I thought. 'Writing about disability in costuming would be fascinating!' 

I got into corsets from a friend I met at an autism conference; they were wearing a corset and describing how it felt like a calming hug. A personalized weighted blanket. Over the years, I explored mass-produced corsets available online, and determined I needed to make my own. It would also be handy to wear to the LARP I had joined. And so, I dived into the world of historical sewing. 

Which lead me to this convention and the realization that I don't really like modern clothing. The hems, the fabrics, the fit. It has been revolutionary for me to relearn sewing and attempt to sew my own clothing. Clothes should not feel like something to tolerate, but provide comfort and ease. If I must dress myself in clothing made from bed sheets in order to do so, then so be it.

And at the same time, I want to talk about stories. About how research can be used to tell stories. How research can be used to tell stories through data. There's a tendency to respond "well duh" to some studies, and I think that is a disservice to both the autistic community and researchers. Yes, we write stories and blog about issues. But studies take our stories and combine them. By combining our stories and codifying, it says "this isn't just a few people, this is a wider issue."

And I want to talk about my thesis, a learning experience I treasure. How it sparked for me an interest in research and the possibility of further studies. How I want to connect what I've spent all these years studying to my communities, as tools to our causes and needs.

I want to talk about my new kitten, Ezra, and the joy he gives me. Especially when he's being sweet and cuddly. 

I want to talk about the sudden loss of spoons, the desire to do something but being unable to start or complete the action. The need to write something, anything, only to feel the spark fizzle out at an empty screen. The despair as idea piles upon idea, building up to an aching pressure.

I want to talk about pain. The sharp stabs and the deep aches that become constant companions. The pains that are temporary, the pains that are chronic, and the pains that very slowly heal. 

And finally, I want to talk about perseverance. Whether through hope or spite, the importance of continuing on. To do what you can, when you can, however you do it. How I'm learning to forgive myself for taking time, as I forgive others. To recognize my own limits, as I recognize the same for others. To pause and rest when I need it, and to take my time recharging. To let myself fall apart. To let myself put myself back together at my own speed. 

To let myself enjoy things. 

And, when I'm ready, to write again. 

A Small Thing

Nothing stays the same. Everything changes. 

That's the opening for one of my attempts to write something today. It's a piece on depression. I got partway through trying to describe the deepest pits of despair and darkness, and then I realized I didn't really want to talk about that. 

Even taking out politics, I think we've all had enough of that this year. Heck, enough of that for the past four years. 

So, slight confession. I don't know exactly how anniversaries work and how they're calculated. I just know that on 15 October 2010, I wrote Real Communication Shutdown, which was followed by Autistics Speaking Day and Preparing to be Loud. 

It is now 2020, and 11 years later. And I'm not sure whether the 10th anniversary was last year or this year. I'm not very good at these sorts of things. But I counted the years on a piece of paper, and according to my count, it's been eleven years. 

It definitely doesn't feel like yesterday. This year alone has felt too much like forever for it to be yesterday. But I'm reminded of both the changes and the similarities, both the good and the bad. 

There are the obvious things: I live in a different location. I dress differently, my hair has grown and I dye it a different colour. 

Family drama has come and gone and most like will come again. 

I've learned that my body is not quite as reliant as I thought it was, and the gears of capitalism is wearing it down. 

And countless other things, the painful, the joyful, the sorrow, and the wonder. 

Including, the fact that this is the year that I am finally finishing my Disability Studies degree. As I type, I am in my last elective course: creative writing. One might think I can get by with minimum effort, and then pass. But they would be wrong. There are some frustrating aspects about the course; there are a lot of readings that show great misunderstandings and misjudgment towards genre fiction. It's a widespread attitude throughout academia that makes studying creative writing typically difficult. 

However, I'm making my own challenges for the class, taking the assignments as they're given and putting my own twist to them. And the result is that I'm finding myself more encouraged to write more.

The last few months, I've been making more things, sewing, embroidering and crafting. It's been a sliver of silver lining, and I wish I could just stay home and create.

I know that there are still troubles ahead of us, and I hold onto the fact that writing gives joy. That making things makes me happy and gives me reasons to start my day. It might be a small thing, sometimes, but sometimes a small thing is all a person needs to keep going. 

And sometimes, a small thing becomes a big thing, and lasts for years. 

Here's to making things. Here's to the small things. Here's to the big things. Here's to the things that just make us happy in these dark times. Let them keep us together. 

Open Letter: Autism Services and Direct Funding

Emailed this afternoon, Feb 6, 2019, to several members of Ontario government and two staff at The Star. Honoured members of Government, members of the Press, and to Those Whom This Concerns,

Recently, the Ford government announced the decision to overhaul Autism service provision in Ontario. One of the goals in the overhaul is to address the extremely long wait list for services implemented during a crucial window in a child’s development. As often pointed out in early education and development, what happens in the first six years of a child’s life has lasting effects on the rest of their lives.

However, myself and other autistic people across Ontario are concerned and would like to take the opportunity to address those concerns.

We are concerned that the currently announced amount of direct funding will not be enough to support services for all needs and supports throughout the year. We are concerned that there will be an age discrimination on the direct funding, that this will affect late diagnosed autistics such as older children, teenagers, adults and seniors, who are also deserving of support and services in Ontario and throughout their lives, in education, employment, health care, and daily living.

We have concerns about the resources that parents have in making decisions on spending their direct funding. We want to make sure that they know of all of the options available to them, that there are services and supports that are less stressful for themselves, their families and their children that are possibly more cost efficient, suit their child’s needs, and backed by scientific research.

Parents have a right to know that ABA is under scrutiny by current autism research for its possible contribution to the high rates of mental health issues in autistic people, and that studies arguing for its efficiency do not look at the long term effects. Parents have a right to know that alternatives exist, and we are concerned that there needs to be resources and information available for them to make those decisions.

The International Society For Autism Research is having its annual meeting in Montreal this May. I know that myself, researchers, and other attendees would appreciate if autism research regarding practical supports and services would be put into direct funding policy to positively affect the lives of autistic Ontarians. I have no position of authority to invite members of government, members of the press, parents, or any other interested persons to the annual meeting, but I highly recommend doing what myself and other autistic people do; talk with researchers and pay attention to what has been discovered in relation to the narratives of autistic adults and autism research.

I encourage politicians, parents, and all involved in these policies to pay attention to autistic adults who have been working with researchers for years. We wish to create better supports for all autistic people throughout our lifespan, from babe to old age, and support all of our needs and methods of communication, whether low or high, whether speaking, signing, texting, or AAC.

Thank you for reading,

Corina Lynn Becker

Autistic

[address]

For ASDay 2017 and Ever After

I didn't think I was going to write something this year.

I have two works in progress waiting for me to finish, after all. A piece on how jokes can be harmful, especially when IEPs and disability are thrown in, and an open letter to Simon Baron-Cohen about how he's completely ignorant on neurodiversity when he tried to write about it in a recent article.

These are pieces that are so close to being completed. And like a lot of my work, I'm not sure how to conclude them. How do I tell when something is finally done? How do I wrap it up?

It's a problem I have with my writing, it's a problem I have with a lot of projects. I wonder if it's going to be a problem I'll have with ASDay. I hope one day I'll be able to say "okay, it's been a good run. We did what we set out to do. We're no longer needed," and pack it all up.

And while I think 2017 has been a bit of a slow year, for various reasons, I don't think this is the year that happens.

It may be the year I spent the night before hanging out with a friend having a mental health crisis. It may be the year I spent the evening beforehand at work on a retail shift wearing inappropriate shoes because I was in costume and totally regret it (always, ALWAYS wear appropriate work shoes, even if it doesn't go with your costume). It may be the year I only got 5 hours sleep and dashed out the door to a doctor's appointment.

It may be the year my doctor told me to stop doing everything that I love, to stop typing, to stop writing, to stop all my hobbies and restrict all my leisure pursuits. It may be the year that I promptly ignored my doctor's advice and spent over twelve hours on the internet, doing what I love.

Because ASDay is still needed. Because someone sent in a 20-page essay on neurodiversity as philosophy theory. Because we're still fighting for AAC to be considered a language in its own right. Because I can't count how many people send in self-discovery stories. Because autistic people are still demanding our rights, demanding to be heard.

And we're not going away.

So, for this ASDay, and the next one, and as many as it takes, here I am.

To Temple Grandin, an Open Letter

To Temple Grandin,

You need to stop now. Stop talking about autism, about autistic people. Stop pretending to know about people whom you don't even interact with, whom you have shown nothing but disdain for.

When you started going to autism conferences and doing the talks, it was a big thing. I'll give you that. You were part of the beginning of autistic voices demanding to be heard, to be taken seriously by professionals and researchers and parents. It feels good to be making a difference, doesn't it?

But you're no longer making a difference; now you're harming people with what you're saying. So you need to stop.

What have you said? You've said that autistic people need to "get [our] butts out of the house and get a job." You've only deigned to pay attention to "high functioning" people who not only have jobs, but "careers." This ignores the fact that for many autistic people, there are systematic and environmental barriers in place that prevents us from getting jobs, never mind leaving the house. This ignores the fact that even if autistic people had the training and skills to look for work, the economies in many countries make it increasingly difficult for disabled people of many types to look and gain employment. This ignores the huge amount of depression and PTSD present in the autistic population, which does impact whether someone can work. 

This ignores that someone's worth isn't based on whether one can work. On whether someone can talk, on what skills or talents a person has. 

In other words, Temple Grandin, you are being ableist, to other autistic people and other disabilities. You speak from a place of unchecked white privilege, without knowing about the lives or truly interacting with other autistic people, yet you try to speak for us. Your words are taken on as gospel by parents and professionals, but in truth, you know nothing about us. And you need to stop, right now. 

Signed, 
~Corina Becker 

Lindt and Autism Speaks No More

I heard through Tumblr and Twitter that Lindt doesn't support Autism $peaks anymore. So last Wednesday and Thursday, I messaged the Lindt Facebook account to confirmation.

These are the screencaps from that conversation:

The conversation went like this:

Me "Hi, I was wondering whether you support Autism Speaks or Autism Speaks Canada?
either through the sale of the bunnies or as a corporate sponsor?"

Lindt "Hi Corina, Lindt Canada does not currently support Autism Speaks."

Me "What about Lindt USA? Does it support Autism Speaks USA? Thank you for your response early"

Lindt "Hi Corina, Lindt USA is not partnering with Autism Speaks USA."

Me "Okay, thank you. Then you should know that Autism Speaks USA still list Lindt as a corporate sponsor. Lindt is not a corporate sponsor?"

Lindt "Hi Corina, Thank you very much for letting us know that our logo is still on their site. We've advised our USA team to get in touch to have our logo removed since they are not a corporate sponsor.

Me "okay, thank you and you're welcome"

An October Day

A piece of creative non-fiction, as well as some photos, as a submission for ASDay. 


There are dishes piling up in the sink, a folding crate full of recycling by the door. In my room, a laundry basket overflows as it waits for me to take it to my parents for washing. I've just taken down a large garbage bag to be thrown out on my way out the door. I spent $20 of my last $35 on cat food; payday is another week away, but I think I can get by on instant noodles and frozen veggies. There's some meat in the freezer, but I might have to spend my last ten dollars to buy meat for a few days.

I was going to do chores yesterday, was going to paint yesterday, work on an assignment. However, I woke up with rain outside my window and pain pounding at my temples. A can of cola and a fist of painkillers later, the pain receded, but I was left woozy and scatterbrained. My main focus last night was to get actual food in me, which I more or less succeeded.

Right now, it's still raining, but my head isn't aching. Sleepily, I had contacted my workplace to double check on my schedule for tonight, only to be told I'm off for the weekend.

I hear children racing down the hall. I only hear my neighbours when I'm in the hall, or when they drop something overhead, or if the windows are open.  Or if one of their dogs is barking and barking and barking. I generally don't worry about the sounds I make, only when it's 3 AM and I wonder about the volume on my TV. It's peacefully quiet right now. No sounds above, below or from the sides, only the drizzle from window. That's not even a lot, since it's too cold to have it open more than a crack.

What I do hear is the elevator running, the hum of my refrigerator, the kettle on my stove. I pour myself a cup of tea and let it seep, wearily eyeing my cupboards. It's after 4 PM, and I've gotten out of bed some hours ago, but haven't eaten anything yet. I've had a shower, and haven't eaten yet.  Putting on gloves, I wash a bowl and peel a potato. Usually I just scrub the potato, but the skin makes it crispy. As the potato cooks in the microwave, I stir sugar and milk into my tea.

Maybe later tonight, I'll have some of the fish in my freezer, make a bit of pasta, microwave the leftover veggies in my fridge. But right now, I'm having a potato with a bit of butter and a cup of tea. Last night, in bed, I drafted out some of what I wanted to write. It was too late to pick up my tablet or the pad of paper on my night-stand; I was curled up with my cat, huddled together as I try to cover her with my blanket against the cold. I'm still hesitant to turn on the heater, even though it's almost November. So I lay there and dreamt up words for when I woke.

And now, with warmth in my belly and in my hands, I sit down to write.

~~~

 

  

  

Words are Words

To Autism Speaks,

I've noticed you've made some words changes on your mission statement lately. You've replaced "cure" with "solutions" and included "acceptance".  Some people are calling this a big shift for your organization, myself and many other autistic people don't think so.

While I have no doubt that you aim to stop the autistic people boycotting you and your sponsors, this is not the only change that needs to happen. For us to accept that you truly are changing, there needs to be more than just words.  There needs to be actions as well.

There needs to be systematic changes to how your organization is structured, how it is run, in the decisions it makes, in how it spends its money.

In short, these are just words; what do your actions say?

How I can believe that you're making changes, when you still support ABA as a treatment? When you support research looking into autism and immune systems? When your organization still doesn't have autistic people in decision making positions? When you've pretty much not made any other changes?  When you haven't apologized for the way you've demonized us, treat us as tragedies, cite inaccurate statistics about us? When I still see first-person language used, I can still see medicalization in your information about us, despite so many of us demanding that you do otherwise? When you otherwise ignore autistic people and fail in so many ways to support us?

You want to change? Show us you can actually change.  Until then, we're not falling for your superficial gloss over, your charade.  You're not actually supporting us, you're not actually listening to us, and until there is fundamental changes, you never will.

Toronto Star Interview on ABA/IBI

Back in April, I was approached by a colleague of mine on Twitter about being interviewed by a reporter for the Toronto Star.  The story was about the recent changes to Ontario funding to ABA/IBI. If you aren't aware, Ontario just stopped direct funding for ABA/IBI for over the age of 5 years old, with something of a hazy declaration for more funding to other therapies and supports.

Which, pro-ABA/IBI people don't like, cause the parents have been told that this is the only thing that works, and the professionals, well, they have an industry, even if they mean well, it's an industry that causes harm.

Anyways, the reporter of the article was looking for autistic points of view, and found me.  I prefer email interviews, which has upsides and downsides. Downside, no nice sound-clips to put on the radio.  Upside, despite only having a couple of my sentences actually used in the article, I have the entire email interview to post.

I understand that the reporter may not have had complete control of the editing process; pictures and stories of children sure are more appealing than those of a 31-year old autistic woman, after all.  But I like being fully represented, signed no documents to keep the interview quiet, and so I retain my rights to publicize my side of the interview.

So.  Here is the article that was published by the Toronto Star. 

And here is the complete interview that I gave them:

 You wrote that autistic narratives and issues are being completely overlooked in the  discussion. Can you elaborate on what is being left out that most concerns you?

1) In Canada, there has been a silencing of autistic narratives.  It’s subtle, but it’s there.  It can be seen with how there are barely any services for autistic adults, for autistic women. It can be felt with our absence in discussions about our lives, our past, present, and future. But autistic people notice it acutely, as this absence affects our lives, in the supports we receive, in how organizations and support staff treat us.  And the only real cure for this is for us to a part of those discussions, part of the decisions made by support organizations and provincial committees, to have our voices and narratives be included in all the ways that affect our lives.  To put it simply, I am a Canadian citizen, myself and other autistic people want to be part of the process in shaping our futures in our nation.

Do you have an opinion about ABA principles or IBI, and the belief expressed by many parents that their children's futures depend on intensive behavioural intervention? 

 

2) There are two problems with ABA and IBI; that it is the best chance for an autistic person’s future, despite a lack of scientific and ethically sound evidence, and that ABA/IBI principles are based on wrong assumptions regarding behaviour and autistic people. ABA/IBI is based on behaviourism, which states that if you change a person’s outward behaviour, you change how a person thinks.  It was this same premise that created gay conversion therapy, also by the creator of ABA/IBI, Ivar Lovaas. We no longer think of autism as a mental illness, knowing that it is neurological wiring, how our brains work, but the premise of behavourism still remains in ABA/IBI.  Thus, ABA/IBI doesn’t really teach life skills, or offers the best hope for an autistic person’s future, but teaches that our behaviour, our way of thinking and acting, is wrong and must be eliminated, often with a lot of traumatic stress. The accounts of autistic survivors account for a large percent of PTSD caused by ABA/IBI therapy throughout their lives, and the fact that these narratives are ignored does a huge injustice for the survivors, present autistic children, and future autistic people.

But autistic children are given poor prognosis, with claims that ABA/IBI is the only chance they have, when, quite frankly, this just isn’t true. So the decision about ABA/IBI in Ontario has mixed results; a decrease in focus on ABA/IBI, and some encouragement to look into other supports and approaches for autistic people.

 

What are your thoughts on what the provincial government's priority should be when it comes to meeting the needs of children with autism and their families? Can you talk about your own experiences -- what supports you think were most important as a child, and what would have helped that you didn't receive?

3) (tying in a little from above) What the provincial government’s priority, and all service providers, need to do is look into services beyond ABA/IBI.  It does not help that a lot of current research is into what causes autism, and few little is researching what helps us throughout our lives.  Listening to what autistic adults say about what services we need as adults is one of the steps to providing supports for autistic teens, children, and elders.  I would like to see more supports for non-verbal communication, in conjunction with mental health and emergency services, as well as dealing with issues about racism, violence against women, and poverty, as a start. Ideally, the supports we receive as children should transition with us into adolescence, adulthood, and into old age. Yet, there are hardly if any services for adults, and they do not support the full range of abilities and impairments that autistic people have.

Do you have suggestions on how to better include the voices of Ontario people with autism on this particular topic and in media stories? When we're talking about the specifics of IBI this can be challenging, as older teens and young adults who have experienced the therapy aren't always able to recall the experience or express how it affected them

 

4) When talking about autism, parents and professionals are usually the ones taking the stage right now. However, I think there is a huge disservice by not including the voices of autistic people, in government decisions.  Parents, professionals, and other caregivers want what’s best for their children, whether age they might be, but it is autistic adults who can say “this was harmful for me, these other supports are more appropriate” or “making these changes to a classroom would have helped me”, because we’re the ones with direct experience.  It just makes sense to ask willing autistic people for advice on what needs to change in policy and practices. And for this to happen, people also need to be open to various styles in which someone’s narrative is expressed, not so much dependency on speaking, but valuing other methods of communication. 

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Today We Fight

Taking a look at my archives , I've been blogging for quite a while.  I started this blog in what, 2009? And I know that I had been lurking around the autism web since 2005.  I remember having conversations with people about whether or not to blog under an alias or a real name.  The short form is that while an alias provides more privacy, a real name grants more authenticity and authority.

Which is nonsense. This, and the practice of having to write up disclaimers saying, basically, "this is just our own individual opinions" is utter nonsense.  As if what we have to say, as individuals, has to be pointed out.  For any majority group, this would be assumed, with the language we use, with the fact that it's not an organization's official blog, any of that.  It is an attack on minority groups, on protesting activism groups, to demand that autistic people disclaim own words.  It is telling us that we are not like their children, we couldn't possibly relate to their children, so even our opinions can be ignored because they just represent us. 

It is a subtle attack of violence and oppression.  It is a pin-prick compared to the slaps and stabs that it foreshadows, cummulating in the mass acceptances that our lives are not worth living, that we cannot have a say in even if we live and whether we are better off dead. 

I have been doing this blogging thing for a while.  I have seen a lot of the same stuff come by, over and over. It can be wearing, trying to respond to it all, as if it were fresh and new.  Saying the same things, again and again.  

We have made some progress. I believe we have.  It has not been perfect progress, it is not enough.  There just has been some progress made. 

It doesn't feel like much, sometimes. Especially when March 1st comes around and we read off the ever growing lists of our dead, murdered.  Our progress was not enough to save them.  Each of their deaths is a slap, a reminder that it could have been any of us. 

But they haven't killed us yet.  So we remembered our dead, so that one day, there will be no more names to add to the list.  Today, during April and beyond, we fight like hell for the living. 

We fight for our right to represent ourselves, to make decisions in our own lives.
We fight for our right to affordable housing, for the right and access to jobs that make more than sub-minimal wage, to make a living and pay for our own rent, our bills, without living in poverty.
We fight for the right to live our lives, to communicate however we can, to live at any and all abilities and limitations.
We fight for support systems across the lifespan, for mental health series that access meet our needs, for non-verbal crisis support, for accessible shelters from abuse and violence.

We fight for the simple right to be human, to be included in human rights.

We don't need to prove anything to exist. We are enough as we are. Any changes in our lives, from the smallest detail to the largest of decisions, is our choice, our say. We exist, we are human. 

It seems like common sense, but it's something that apparently we have to continue saying.  And I'm not just saying this for myself, but for all of my autistic siblings, of all ages, of all abilities, wherever in the world they might be. For autistic people currently living, and those whose lives are yet to start.

We are not alone, and together, we will fight.

The following is a list of posts I've made over the years.  They aren't all perfect; I've grown and learned over that time. Some of the wording, particular phrases, that I've used before, are not what I would write now.  However, I think that these articles, from the past, in the present, and towards the future, communicate a lot of what autistic people this month have been fighting for.

Where are the autistics? (2012)
What's the Point of World Autism Awareness? (2013)
25 Things I Know as an Autistic Person (2010)

What I Want People to Know (2010)
Why "Retard" is a Hate Crime (2011)
Blogging as Communication (2009)
On Neurodiversity (2009)

Static Bubbles: The Myth of Functioning Labels (2011)
-- Functioning Labels and Meaning (2011)

Spoons, Batteries and Autism (2009)
-- Expanding Spoons (2012)
-- Expanding the Battery Levels (2013)

Video series from 2009
Real Autism Awareness
Speaking is not Communication
Let's Talk Neurodiversity


#REDinstead

ASA Keynote 2016

It was a few years ago that I attended the ASA national conference as a presenter. For me, it was an interesting experience to meet people I had met online, to really get a feeling for the state of things.  I came home a little queasy. 

Yes, there were social badges, yes there was a sensory room.  But only a few of the vendors understood what it meant, and the sensory room was kinda far away from the rest of the conference. Sure, you want to make sure there's quiet for the room, but when I'm spending what little resources I have just to get there and back, it's not really worth it.  

Even as my autistic peers and I passed around curebie bingo cards and filled them in rather quickly, I was optimistic; it had to be better than it used to be, right? It's not the huge sweeping changes we want, but these things take time, right? Surely they're working to be better.  

Alas, I fear I was hopelessly optimistic.  Yesterday, as the autistic and disability communities were observing the Disability Day of Mourning, ASA sent out emails about the upcoming conference, announcing their keynote speaker.  

This is not how a community, how an organization moves forward to include and respect autistic people.  It shows not only in decisions regarding treating individual situations, but also widespread decisions on who you honour as major speakers, who you give a platform to.  

Instead of choosing any number of qualifying autistic people, ASA decided to have the writers of In A Different Key as keynote speaker.  

Given the way these writers fail to do basic fact checking for their book, the harmful attitudes towards autistic people, the sympathizing with murderers and abusers of autistic people, I really do not see how this can be seen as anything but representative of how ASA views actually autistic people. 

It's disgraceful and hurtful for an organization that is so prominent to highlight and uphold violence against the people they are supposed to be supporting.  It is damaging and it is endangering autistic lives. 

No more. 

Stop killing us!!!

Social Assistance, Poverty, and the Cost of Living

I've written about Disability and poverty before.  And now we're getting in to the election season here in Canada again, so it's a topic that's coming up.

My friend Katrina Sauvé, has written the following and given me permission to repost it here:

In Response To: http://notable.ca/breakdown-this-is-the-minimum-amount-of…/…

as someone who has lived on OW/ODSP:

housing: geared to income shared housing is the ONLY thing you're going to be able to afford on the under $500/month that these programs give you

yes, that does not work with some people's mental needs, sucks to be them (and if I had enough money to change that, I would)

Transportation: $141/month? so not happening.

if you're not working, you probably can limit your bus trips to once/week and budget accordingly. yes, if you're disabled but the government hasn't admitted it yet, you're kind of screwed 'cause you won't be able to get your laundry AND groceries AND appointments all in that day

if working, you probably want to get a discounted bus pass (yes, Kingston, and hopefully other cities do give a discounted monthly bus pass to low-income persons. I advise you/your workers look into this)

Groceries: I manage to get groceries for about $200/month (or at least I spent $200.14 on all food in the month of May 2015)

tips: things like the Good Food Box Kingston are your friend; cooking big batches and and freezing the leftovers is your friend; lentils, beans, pork and potatoes are your friends; pasta and rice are your friends; buying in bulk as much as possible is your friend; if you will eat sausages/baloney/hot dogs/liver/tongue etc, they are your friend; dairy, fresh/frozen fish, high quality cheese, chocolate/candy and soda pop are your enemies, buy as few as possible of those (though do get yourself some single serving yogurts and either sour cream/ice cream/cheap cheese so you aren't missing out on calcium etc), also avoid any beverages but water, tea/coffee, water w/ flavouring

if you are on OW, you CANNOT afford to eat out unless it is at a soup kitchen, you will NEED a soup kitchen (and yes it sucks), and you may need the food bank. If you do not take advantage of these services, YOU WILL GO INTO DEBT. You do not have enough money to AFFORD to go into debt. USE THE FRICKEN SOUP KITCHENS/FOOD BANK.

Entertainment and Dining Out:

if you are on OW: FREE THINGS. do ALL OF THE FREE THINGS. let yourself have about $10 (aka ONE film/cheap eating out) PER MONTH to keep yourself from going crazy

yes, you will go into debt that way. do it anyway

ODSP: you can eat out two or three times a month if you keep it at or under $12 per time... you are allowed to substitute a film or show for one or more of these. if you are careful, you can do ONE convention/holiday where you pool money w/ others/stay w/ friends PER YEAR. Choose wisely, set your budget ahead and save $20/month ish towards that.

Drinks: Alcolhol is not worth it on either OW or ODSP. it is far to expensive for the joy it gives you. If a friend is buying you alcolhol that is ok, don't buy it yourself.

Health and Fitness: the gym is not worth it for the money you have, especially since you can do things like walk every day, run, bicycle (buy a SECOND-HAND bike for $40 ish at a police auction), skate (Play It Again Sports is your friend for reasonably priced skates, find outdoor/free rinks in winter or even cheap skates through local rinks) or swim (yes, A half-decent swimsuit, cheap towel/bag are worth the investment, as is the cheapest swimming place in town)

if you are on OW: depending on if there is water nearby, you may be able to swim w/ friends for free, if there are no ponds/rivers/lakes, consider any funds you spend on swimming/skating as part of your ~ $10/month entertainment fund

parks often have skating rinks set up for free in the winter

Walking/running/biking are your friends

does all of this seem unreasonably hard?

IT IS.

THAT IS THE POINT OF THIS WRITING.

If you have the energy, GET INVOLVED IN POLITICS and lobby for HIGHER tax rates for corporations, LESS of a wage gap and MORE money for those on ODSP/OW (or even a GUARANTEED MINIMUM INCOME that will let someone survive, if slightly uncomfortably).

I spend $5/year on NDP* membership, because, from what I can tell, they most support those of us who are low/no income.

Greens and Liberals aren't bad choices either.

*NDP, for those outside of Canada, is it New Democratic Party.  See, we don't just have one Liberal/Democratic party... we have at least two.... Three if you count the Green Party. 

Me? I'm looking at the article and wondering how they're making their estimates.  Cause yeah, if you go out for drinks and shit, stuff is going to cost. ($18 for an alcoholic drink????) 

But apparently, that's all we young people are doing these days, lounging around our excellent downtown apartments, cooking all the meals, taking each other out on dates, and drinking in excess.  

Right... I'm sorry, isn't there a recession going on? Isn't there something like only a 5% job growth for most parts of our country? Don't our older generation complain that we're living at home and not doing anything?  Maybe cause we don't have jobs and don't have money to do any of this shit???? 

Oh, and of course, how many of us are on ODSP/OW? You know, living below the poverty line? 

Yeah, fuck this shit, let's all get out there and vote.  

NeuroTribes Review

A couple of months back, I was sent an email asking whether I wanted a free copy of Steve Silberman's NeuroTribes.  Being something of a book hoarder, I really couldn't refuse.  I've been looking forward to reading this book since I've heard of it coming out, and offered to write a review.  So, for the sake of transparency, all I've gotten out of this is a free book and a voluntary obligation to write a review.

Cause I want to talk about this book. I really want to talk about this book.  This book deserves to be talked about.

I got my copy, oh, a week or so back, I think. Early August. (Yeah, I'm bad on time)  It took me some time to work up the nerve to open it, and then it took me longer than I expected to read it.  It is a subtly and surprisingly packed narrative written in and around various mini-biographies, following a single thread throughout history: the diagnosis of Autism as we know it.

I feel like there was a lot of material that Silberman has been working through, and chose his words with care to say the most, to show instead of tell.  It is a rich weaving of history, some of it painful and dark, and does not shy away from that.  Some of this I knew about beforehand, as part of my own experiences researching and being a part of Autism history, and some of it I could only guess.  I know that for those who are not prepared, it can be very disturbing.  Even prepared, the stories shared in NeuroTribes can be disturbing.

Silberman covers a lot in the pages, including treatments used on us, the theories prescribed about us, and how there is this fight to recognize autistic people, all autistic people, as autistic.  Complete with how such things like a diagnosis impacts individuals, and a glimpse into the beginnings of autistic culture, both before and after the advent of the Internet.

But this is our history.  And this is probably not the last book on Autism history, but is only a part of our past.  No, as I'm sure many of my community will agree with me, it is not complete.  This is a slice of where we've been, condensed into a nearly 500-page book (the epilogue ends at page 477).  That couldn't have been easy.  Especially since I know there is a lot more material that Silberman has from writing NeuroTribes, waiting to written and shared with the world.

Most importantly, there are parts that I didn't know about, new information about our history, indications and answers to that ever so annoying question "where are the autistic adults?" As Silberman shows, we have always been here, in the past, in the present, and in the future.  After all, some of those incomplete chapters, aren't we still writing those?

Let's go make the next volume of Autism history!

Hair Autonomy

Recently, I've started to cut my hair.  Doesn't sound all that impressive, does it?  Well, at first it was just trimming the back of my neck, doing my own bangs, you know, little touch ups here and there.  The bangs thing was fairly regular enough that I bought my own pair of sheers because I found that hair dressers, no matter how nice, and they make awesome efforts at this, never quite get what I'm trying to describe how I want my hair.

And repeat visits, yeah, it might try to clear up what I want, but it's expensive, both in terms of money, time, and social resources. So I took matters into my own hands.  

Some of the results were more successful than others; I'm not exactly trained at this.  But I got a bunch of good feedback from numerous sources, including people who generally I expect them not to give an opinion either way, and friends who give honest feedback.  I figure, the only way to get better at something is to practice, so I continued on.  

And then I got the idea to cut my hair not only really short, but shave it.  For a number of different reasons, ranging from comfort while I sleep with my CPAP, to cosplay dedication, to why the heck not?

I thought about it for a while, even looked up shaving techniques and shaving for cancer fundraising campaigns.  I even tried talking to my parents about it.  Their response was... mixed.  "Oh, you don't want to shave. Go to [hairdresser] and get it cut short."  It felt really uncomfortable to talk about this to them, and I walked away from it trying to figure out why.  

Why is shaving one's head such a thing?  I asked myself this and started getting the itch to cut more.  

Not self-harm cut.  Since I was a kid, when I was angry or upset, or maybe even just frustrated, I'd cut things.  My mom's lunch bag, my brother's shirt, I'd even grab chunks of my hair and cut.  When I did that to my hair, Mom would whisk me away to the hairdresser to get it "fixed". Even with limited access to safety scissors, I went to the hairdresser a lot. I think it speaks a lot about how my mom views my decisions about my hair that years later, it took a family counsellor to convince her that as an adult, I don't need her permission to dye my hair and the remarks she'd say were very inappropriate, not to mention hurtful.  

I thought about that as I started cutting my hair the shortest it's ever been.  As I cut, I also posted pictures on my Facbook to document my transition.

   

The pictures of my hair like this, got comments about it being art.  Which I suppose is a way of looking at it I haven't considered.  But the more I think about it, the more I like the idea of my photographs as an art.  After all, it's documenting my journey, and various learning about cutting one's own hair, towards self-expression.  

I don't really see it as any different than when I compose and post images of my medications for the day, my dermatillomania scars, my migraine updates; I see it as sharing not only who I am, but my life and what I go through, and how I share, with friends, family, and yes, the public. As long as I am willing, and I control the lens, I don't see the problem with it. 

Except that art can be political and/or a form of activism.  I live in a situation where I can express myself through art freely, not only in my country, but also in terms of my personal intersectionality. I am a white woman, most of the time seemingly abled in public, who maintains privilege from a middle-class background, including my wardrobe.  

Two things come to mind when I'm cutting my hair.  

One, I think about how a lot of the questions I get when meeting casual acquaintances is centered on "why"; they want to know why I cut my hair in such a style.  The most negative comments (from family, I might add) expresses concern that I'll be judged badly, or that I'll regret it (it's hair, it'll grow back), or that it'll be ugly. 

I usually don't care about physical appearances too much, but I can't help but think that their concerns and negative attitudes is based on a rather limited view of beauty.  And an ugly view on society too.  So far, I've yet to be treated badly for my hair.  Could it be that people see my hair as only a small apart of my appearance?  There is the possibility that people have made assumptions about my lack of hair and my health, or that my various intersections of privilege has shielded me.  But why can't this be beauty?  

Second, I think about how many possible ways in my country where someone like me not be able to cut their own hair, in the way that they want.  For self-expression of their gender, or beauty ideals, or just to style their hair their way! In a different situation, it might be difficult for someone to style their hair because they live in an environment where they have no control over those decisions, whether by relatives or care staff, coercively or outright deciding for them.  

Or they must appease the people they live with, living in at least a faintly toxic environment or situation.  Or it's just not safe for them to do so.   I think about how in activism, we push for things like body autonomy, freedom of choice, freedom of expression; how much can be taken for granted with being able to cut and style one's hair?  

With both thoughts, the act of hair cutting becomes a rebellion, a defiance.  To go against perceived notions of physical beauty, to redefine beauty, but also acting for one's own body autonomy.  The freedom of the self. 

Autistics Speaking Day 2014

Originally posted on the Autistics Speaking Day blog

I know I'm late running for ASDay 2014, but I have most things in order!

For one, the submission form is now open and ready to take submissions.  And the Facebook event page is online.

And as always, I do advise people to review our FAQs and our Content Filter List.

I know it's only about a week until Nov 1st, but let's have a great day!!

Citizen Autistic

I unfortunately missed the great crowd sourcing campaign for the documentary "Citizen Autistic" (William Davenport, 2014), released this month.  However, I was just contacted by Cinema Libre Studio with their press release and a chance for an early online viewing to review.  How could I say no? 

Now, my review isn't going to be unbiased. I'm an autistic activist who works alongside and has met a good number of the people interviewed in the film. I sort of have a vested interest, even though I'm in Canada and most of the specifics take place in the United States.  However, I do believe that there is an international effect to greater disability rights, and to Autistic rights, and so this film is part of that dialogue.  

Onward to the film!

At about 60 minutes long, "Citizen Autistic" is rather brief, and of course, not going to cover in complete detail every and all issues in the Autistic rights movement.  It does cover some of the current contenders.  

It opens appropriately with the National Day of Mourning in Washington, D.C., and goes on to cover the Judge Rotenberg Center, Autism Speaks, and the discourse between parents and autistic adults in advocacy work.  

Some points are also brought up are the similarities between the autism rights movement and gay rights movement, as well as bringing our rights into the greater disability rights movement, as well as how the Autistic community could possibly look towards Deaf culture and community as a model of operations.   I liked how autistic people interviewed presented different views, various perspectives regarding the rights models, but otherwise pretty much agreeing that this is an issue of human rights. 

Points about parents and autistic adults were covered with AASCEND, which was a very interesting piece to watch, and definitely frames the question of how the so-called conflict and division as very much a question of government funding, as well as a matter of being allies without taking over the movement. 

Lastly, in some of the final comments, Ari mentions using one tenth of research funding to fund AAC devices, for communication that'll improve quality of life.  That's just one tenth from research, diverted to practical applications that affect autistic lives. 

So those are the main points that really stood out to me.  It's a short film, as I've mentioned before, but I think it does a really good job covering various perspectives in the time frame that it has.  Are there more perspectives in our community? Are there more issues that affect us?  Of course, and this shouldn't be the one documentary about autism advocacy that gets made; why not make more?

But I watch this, and I nod along, because I see my community, I see my fellows represented, I see our voices represented, and I have hope.  I have hope that this is just the start of our representation.

And I'm so going to go order a couple copies of the DVD now.

2014 ASDay and AWN PoC Anthology

[Originally posted on Autistics Speaking Day Blog Sept 12, 2014]

Hi all!

I know I have a few submissions from 2013 I need to post.  Sorry for the delay, I got delayed for too long.  But I am going to post them.  Just as soon as I finish this post.  

I'm getting ready for ASDay 2014.  It's on a Saturday this year, and I wanted to let people prepare in advance, to think about what they're going to do.  

At the same time, there is something I think that is important that may or may not appeal to participants.  But this is really important.  I know that ASDay matters to a lot of you because it gathers many voices in a large event, as well as other reasons, but I'd like to take the opportunity to address another opportunity coming up soon that people may want to concentrate working on. 

I'm going to have to disclose, of course, as I am Vice-President of the Autism Women's Network.  But AWN is working to publish an anthology on Autism and Race, and is looking for submissions, due November 14, 2014.  If you are autistic, and a person of colour, racialized, or non-white, I encourage you to look at the AWN submission guide and consider submitting something. 

This is a project lead by Lydia Brown, aka Autistic Hoya, who I don't know about you, but is one of the people I'd immediately ask "how much do you want me to write, and when do you want it?" if not go scrambling to look for something I've already written.  

But this is your choice.  I understand either way.  

What matters is you expressing yourself, your story, what you want to say about yourself as an autistic person and your life, what you want to tell other people, what you want to change about the world.  This is about you communicating and gaining power through that, about providing an outlet, a starting point.  

ASDay has been described as a blogging carnival, a festival of our "voices", our passions and dreams. It is a celebration of who we are, a memorial of our scars, a scream of our struggles, a rallying cry to continue on for our rights. Because of the most powerful words "I am not alone". 

Intersectionality is how different aspects of our identities affect our experiences, sometimes in different ways in different situations.  Like being a woman can be a privilege in one situation, or be a barrier in another, or being a person of colour, or being disabled, rich or poor, and so on. 

The anthology matters because for too long has books and Autism materials about us been dominated by parents, professionals, and white people who do not represent all experiences of autistic people.  I see it every time I walk into an Autism conference center and look at the book displays.  How can we be "Nothing About Us, Without Us" without all of us being published, without all of us being represented?

 It cannot happen. 

Not without projects like the Autism and Race anthology.  

Either way, I look forward to seeing your work!!  

Autism and Grief

Yesterday I put to rest my childhood cat, Nibbles. Amongst many things, it has me thinking about grief, and the mourning process.

Now, one of the most hurtful things I have come across when I learned about being autistic was the concept that autistic people don't feel the same level of grief for people or pets, because we don't show the same reactions that non-autistic do.  And this is reason to believe we don't have the same feelings as other people, and all that nonsense. 

When, in reality, it's more of a difference in grieving expression and process.  Like all new rhetoric regarding autistic emotions and expressions, this includes grief and mourning.   Now, obviously, each person is going to have their own process; what works for me might not work the same way for someone else.  However, the stages of grief more or less are the same, and what is the same for everyone is that we all need time and space to process our grief, whether alone or with other people.  

What is important for family members to know, for autistic people to know, is when to offer help, when to let people be to mourn by themselves, and ask for help. 

As someone who has lived through the death of three grandparents, a baby goddaughter, and now three beloved cats, I am no stranger to grief.  It does get easier each time to go through the process, although the pain is still just as deep, just as terrible, for each one.  It is the sudden deaths that adds shock, denial, and dismay to the grieving process and makes it so much harder.  Knowing that a grandparent is old and sickly for a long time does give one time to prepare ahead of time, as for an elderly cat.  

I have found that I do two types of crying, to go along with two modes of my mourning process, my private and public modes, that I'll move back and forth during my grieving.  

I do most of my crying in private, I prefer to be alone to cry and be silent.  Emotions, especially strong emotions like grief can be overwhelming raw, and way too much to be shared.  So I prefer to be alone when expressing my deepest pain and sorrow, unless I have no choice or it's too big to be held back.  

When in public, sorrow will slip out, whether I've pulled myself together enough to talk about it, or it just slips out a bit.  I know that there are some days where I'll be crying off and on without prompting.  And then talking about it, cause I need to get it out.  I call this my public mode, cause it's grieving sort of publicly.  It helps to be with trusted people, but I've been known to just start talking to anyone to get it out.  

If I do public mode too much, I can sometimes get overwhelmed and need to retreat into private grieving.  Emotions are raw during mourning.  Things are sensitive.  I know I move more slowly, I'm unable to do some of the things I used to be able to do before, especially social things.  I do try to keep my schedule, keep to a routine, cause it helps keep myself from completely falling apart mentally.  But I forgive myself for not being able to keep up with social events, for mental health things.  And I do what I can to make sure I'm taking care of myself physically, like going on walks, eating and taking meds. 

I know that the issue of when to offer supports, and when to look for supports comes up, since when does grieving become depression.  It's a bit different for everyone, and everyone takes different amounts of time to process and go through the mourning process.  First, I would offer being there for the person in mourning, or bear in mind that there is help if you need it.  But don't push.  

Grief becomes problematic when it starts to negatively impact your life, even if it doesn't become depression.  Don't expect to overcome grief in a few days, or even a week.  It may take quite a while.  But if it is having some major impact in your life, you might think about seeking help.  Remember that while seeking help, you are in control, you are a client, a consumer.  

The best list I have found for when to seek help comes from Jim Koeneman of New Life Grief Counseling, and is the following: 

1. Have you lost the ability to enjoy things that used to provide you personal  satisfaction?
2. Do you find yourself not wanting to be around your family and friends because you believe you would “put a damper on the party”?
3. Do you find yourself constantly thinking of your loved one after several months after his or her death?
4. Are you afraid of becoming close to new people or even with existing family and friends because you fear of losing them at some point?
5. Do you try to keep yourself constantly busy so that you won’t think about your loss?
6. Do you feel numb to your normal emotions?
7. Are you unable or unwilling to express your true feelings about various aspects of your life that used to be very important to you?
8. Do you feel stuck in your grief, unable to move on, even though it has been quite some time since the death of your loved one?

The best way to find a therapist I find is to meet with them, get a good feel on whether you can easily talk to them, can work with them.

But it's never a good idea to force someone to meet with a therapist; it has to be them willing to go, them willing to talk and to take those steps for the healing to happen.  

We may express our grief privately, and we'll be, well, not exactly okay, because we've lost a loved one, but mourning is natural and normal.  It's healthy.  It's exhausting, but it's healthy.