All opinions and views stated on this site belong solely to Corina Lynn Becker, and do not represent or reflects the views and opinions of any organizations, unless otherwise specified.

Wednesday, February 6, 2019

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

Thursday, November 2, 2017

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.

Saturday, April 15, 2017

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. 

~Corina Becker 

Tuesday, April 4, 2017

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"

Monday, October 31, 2016

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.





Friday, October 14, 2016

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.

Tuesday, June 28, 2016

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.