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]

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

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. 

Expanding Spoons

The original Spoon Theory was created by Christine Miserandino to explain living with Lupus to her friends.  Since then, many people have picked up the metaphor and applied it not only to diseases, but to various disabilities as well.  I know many people in the Autism communities who use the metaphor as an expression.  I myself have attempted to merge Spoon Theory with my own metaphors of Batteries, and use the expressions in my regular life, with spoons being used more frequently than batteries 

Lately, I have found myself and my friends being creative with the metaphor. For example, "my spoons are too big for that", "my spoons are too small" and "I don't have the right type of spoon for that".

As my friends and I have discovered, people can have different size spoons and spoons that do different things.  Take a look around a kitchen.  There are measuring spoons, teaspoons, tablespoons, serving spoons, soup spoons, stirring spoons, salad spoons (okay, those are tongs, but they look rather like spoons to me).  There are spoons designed for certain tasks and certain uses, and there are general, all-purpose spoons. 

In the world of spoons, there is a great diversity that can be used to expand the use of Spoon Theory from being a metaphor to being an expression, a key wording to expain why someone is withdrawing or leaving ("I need to get more spoons") or as a short form for why someone cannot currently do something that they might have been able to do before ("I don't have that spoon right now"). 

Spoons are the tools, abilities to access and take our energy (batteries, as I've previously called it) to do things.  Sometimes I've had spoons that are totally not right for the task I'm supposed to do.  Sometimes I have spoons that can't access the energy I know I still have to do something.  Sometimes my spoons are too small for a job.  Sometimes they're too big.  Sometimes I can use what I've got to do things, even if it's not the right spoon, and sometimes I just can't.

My friends say that their spoons are too big if it's tough.  As in, it takes more energy-brain power-ability to do something.   If it's a small spoon job, then it's a pretty easy task, maybe one that can be done without thinking too hard about it.  We joke about each of us having different spoons as our "regular" spoons, some of us using teaspoons, while others use ladles. 

Sometimes I have too many spoons, sometimes I have too many and have left overs at the end of the day.  I wake up each morning never too many spoons I have, because sometimes I don't actually know, like they're hidden and only revealed to me throughout the day.  So I ration spoons carefully, because it might be one of those days where I'm in danger of coming up short in the end.  Because if there's anything that I've learned, it's that I can never totally forget that it costs me to be a part of the world, and that I always could use a few more spoons.

Crisis with the Help Lines

You know those crisis help phone lines?  The woman's shelter lines, the pregnancy lines, the talk help, kids help lines, and mental health crisis lines?  Those.  It has occurred to me that those help lines are kinda ableist.

Think about it.  They all require people call them over the telephone and speak to them.

In a time when you can get customer service over an internet live chat, where are the help lines for people who are non-verbal, people who communicate better in written or typed word, or who are so into crisis mode that they lose all verbal capabilities?  Or people whom English is not their first language or whom aren't fluent in English?  Or who have sensory problems and have difficulties using a telephone? Or are in a situation where they cannot seek assistance through their caregivers to communicate the crisis?

Also, when in crisis, it can be very hard to verbalize the pain and what going through, even if one does retain verbal capabilities. Failure to address the needs of the non-verbal population means that there are people who are not being supported or have access to community resources and accommodations.  This leads people further into crisis, with no where to turn for help. 

So when someone goes into crisis mode, they also go into survival mode, a state where someone purposely or subconsciously shuts down skills in order to cope.  This is dangerous, because now the person have further difficulty in  accessing community help and services, cannot communicate, and is more vulnerable to further crisis, including escalation into self-harm coping strategies.  The longer in this state, the pain caused by the crisis can lead to extreme measures of self-harm, eventually leading to suicidal behaviour. 

At this stage, there are more than one crisis; the initial crisis and the mental health crisis.  The results of care then become dependent not only on the structure of support for that person, but also the preparation of local mental health services in dealing with complicated crisis situations. 

Now, there are online resources available for mental health crisis, such as the list provided by Boggle, including a Forum and live-chat online services.  However, there needs to be access to non-verbal crisis support across the global, and a connection to local mental health services.  With many service providers, crisis support phone lines already exist, and they maintain a team to respond to calls.  What if there was also a way to text into the crisis line?  What about maintaining a Twitter and/or Facebook account, where it's possible to private message the operator? Monitoring Twitter and Facebook messages can be done while monitoring a phone line.  There is also the option of a Forum, where there can be group support and private messaging options for daily support as well as crisis support. 

Non-verbal accessibility is possible, and is incredibly valuable to a wide population, not just non-verbal Autistic people.  It has the possibility of connecting mental health services to the online communities, to people who cannot otherwise access much needed support.  Yes, it does require making adjustments, getting people to write code, retraining employees, and other costly changes.  But this is an area of need within the disability and mental health communities that is not being adequately met, resulting in the isolation and despair of many.  It also sends out a negative message to people, that their needs are not deemed worth to be addressed, that their crisis, their methods of communication, are not significant. 

In my opinion, it is the obligation of mental health services to develop ways to make their services accessible to all.  Otherwise, they are failing to help the people that they are suppose to support, a failure that can have drastic and fatal results.  Yet, it is possible to correct this, to make crisis and other types of support accessible, if service providers are able to embrace alternative, online and text-based methods of communication.  Then truly they will be able to reach those who need their services.