Friday, February 28, 2014

The power of "NO"

I'm still working on my last "violence" piece. There's been a lot going on, and frankly the topic is too hard to address all in one sitting. The only way for my mental health to not suffer is to spread it out over a few weeks to give me a chance to process the horrible things that I am thinking about when I write. So, in the meanwhile, I will resume my "regular" blogging. But I promise, it's fact, it's several thousands of words long already...


It might actually be the most underestimated word in the English language.

There is no single word that carries with it as much strength, authority, and determination.

Kids, usually around the ages of 12-18 months, typically learn this word. Usually, this happens in an abstract context, with them not really understanding what it means. They use it more repetitively than intentionally, and often in strange or unusual ways.

But as they age, they start to understand the aura, the mystery, the unabashed power of this word.  This word, that has been so long used to restrain them, starts to become a symbol of the very first attempts at self-determination.

The toddler says "NO!"

And all of a sudden, the parent's world is shaken to its core.

We call this period of self-discovery and empowerment the "terrible twos", as if autonomy is somehow considered a bad thing.

But what it is, in its very essence, is the very first step in verbalized self-advocacy and, in a world where words seem to be the only type of communication that matters, this word is like a sword of independence and a shield of self-defence.

Self-advocacy is inconvenient for parents.

Self-advocacy is inconvenient for the system.

So, from the get go, we attempt to "tame"this defiance streak right out of our kids.

Compliance is key.

But for me, as the mother of a previously fully non-verbal son who has only recently begun to explore the world of language with zeal and delight, there is NO sweeter sound to my ears than to hear him say "No," a feat that we discovered this morning he has accomplished.

Granted, right now, he is playing with the sound. He has yet to use it meaningfully. But I know that this will come, in its own time as well. And the possibilities bring me excitement, hope, and relief.

If Sammie only ever learns to use one word intentionally, I hope that it is "no".

Forget being able to name body parts. Forget using the right words for emotions, or vehicles, or utensils.


I hope that he learns to use no.

If he isn't hungry and someone tries to force him to eat an apple, I want him to say:


If he is bored in class and the teacher asks if he likes the movie they are watching, I want him to say:


When I misread his body as being agitated instead of tired, and I want to take him swimming to get the wiggles out, I want him to say:


When I send him to school, with a building full of strangers, and someone tries to tie his hands down to a chair to keep them from flapping, I want him to say:


When he is out playing at recess, and the other kids start to push him around because he is different, I want him to say:


When I try to force him to be a person that he isn't by creating situations that upset and/or disregulate him, I want him to say:


When I send him on his first overnight trip with scouts, or another club, and a man that is supposed to protect him, to care for him, tells him to take down his pants, I want him to say:


When he cries at the door as I try to send him to school, or camp, or a friends, house or otherwise, and I ask him "Do you want to go there?" or "Do you feel safe there?" or "Do you like it there?", I want him to say:


There is no word in the English language that commands as much attention as "no". There is no one word that provides as much insight into a person's state of mind, thoughts, feelings, fears, insecurities, needs, and wants (or rather "don't wants") than "no".

There is no word more important for a non-verbal child to focus on, and to find a way to communicate. 

Don't get me wrong. I also hope that Sammie learns to consent to things. I want him to tell me what he loves. I want him to shout "Yes" from the roof tops every time he is happy or excited about something. The ability to consent verbally is also an extremely powerful and important tool.

But let's face it: Consent means nothing unless you have the ability to dissent.

Consent, without dissent, is nothing more than empty compliance.

Dissention is the benchmark of self-determination.

And while my son has always been able to dissent by using his body and his behaviours, these forms of communication are simply not as validated in this world.

This is world that says "Quiet hands" and assumes that language is the most important indicator for identifying cognitive ability.

This is a world that routinely discriminates against those who don't speak the majority language, let alone those who don't utilize speech at all.

This is a world that dictates that words=communication.

So today, my son is saying no.

Over the next weeks and years, that word will define and refine itself into a mantra of self-advocacy, but for now, it is just a sound, an echo of the word he has heard me use in thousands of different contexts and a foreshadowing of the voice that is starting to emerge.

My son is saying no.

He is singing it, over and over and over, like it is the most beautiful song her has ever heard.

And to his Mama's ears, it very well might be.

Thursday, February 20, 2014

A Day In Our Beautiful Life

I get told, in some form or another, almost every day that Jason and I are "amazing parents" to Sam, "especially given everything…" 

This sentence left dangling, as if most people are afraid of the word "Autism".

For what it's worth, Autism isn't contagious. You can say it around your kids and not worry that they are going to suddenly start spinning in circles…that being said, fun is contagious, and spinning in circles can be a lot of fun. ;)

I think people have a bit of a distorted version of what our lives actually look like. Maybe they see too many blogs of parents who carefully schedule out their 'intervention therapies' or who have colour coded routines on their walls.

These strategies can be extremely effective for some kids- but that's not how Sam rolls. He's always been a bit of a mellow, go with the flow, independent little guy.  He would really struggle if I tried to force more onto him than he was willing to take in at any given point.

There's a philosophy on parenting that has always resonated with us: Free Range. If we had to narrow down our 'parenting style' into just one concept, it would probably be that one (though we also ascribe to most of the principles of Attachment Parenting and Slow Parenting as well).

Basically, you can sum up our approach like this:

When given all the tools and support they need to thrive, children are exceptional at setting their own direction, pacing, and outcomes.  Respectful and loving parenting means giving children the opportunity to self-direct their learning. By focusing our parental interventions on helping them learn to overcome obstacles on their own, we inspire a genuine desire for life-long learning. 

This statement is part of our family mission statement, and a core value in how we approach both of our children's learning.

This makes us a little unusual in the world of 'Autism parents' (a term that I have been told is offensive to some Autistics, and I use here only to refer to a specific subgroup that defines themselves this way).  We do not inundate ourselves with therapies or treatment programs.

We live and let Sam live.

It works for us.

I've been asked a lot about what a day in the life of Sam, who is a 3.5 year old, mostly non-speaking, fun loving preschooler, looks like. I figured I would share a little glimpse of how our world works on a typical day.

It's Tuesday morning. Sam wakes up, usually on his own, around 7 and gets to jump on his bed for about 15 minutes before we go get him to get ready for school.  If he is still sleeping at 715am, we will wake him up so that he isn't late. We go through our toileting routine as needed.
He has two gluten-free/dairy-free waffles slathered in peanut butter waiting for him in the kitchen. He's been gfcf for over half a year now, and the improvement to his digestion, sleep, and overall quality of life has been remarkable. It definitely cured him…of a sore belly caused by allergies and intolerances. 
If Sam wants to eat in his high chair (which sometimes helps him calm his body enough to focus), we will lift him up into it. If he doesn't, we will not force him to. We will usually play a few youtube videos that make him smile to start his day of with a laugh or six. 
He eats as much or as little as he wants. He is also offered a juice box that has been "spiked" with vitamin supplements to address some deficiencies caused by his limited diet.  He is not forced to drink this juice either, but he usually does.  

After breakfast  
Sam engages himself in free play while I prepare his lunch and write in his communication book.  This usually happens upstairs. We try to limit basement play to after school hours, simply because he doesn't have enough time to fully engage in an activity down there and it can make transition more challenging. However, if Sam appears to need a sensory break, he is never denied access to his sensory room. 
Sam leaves for school at 830ish He is driven there by either my mom or I and dropped off for 9am.  At school, he does all the typical "school readiness" things: circle time, structured food time, structured play, work with the SLP, OT, PT, etc… He has specific school goals that he is working to achieve and we are extremely excited by his progress.  
I pick Sam up from school at 12pm.  He is often tired after a long morning of 'work', so we generally go straight home.  I have left out food for snack; Sam will eat when he wants, but he knows that snack stays in the kitchen. He almost always chooses to eat right away after school, but sometimes needs some extra transition time. 
We then engage in free play for the afternoon. If Sam wants to play with me, or with Charlie, he will usually stay upstairs, in the same space we are in.  If he would prefer to play alone, he will seek out a quiet place elsewhere in the house, often in his sensory room or his playroom. I understand his need for space and respect that he will let me know when he is ready to see me.  
Generally, there is no tv on during this time. However, sometimes Sam will request a Train Documentary/movie by picking one out and putting it into the dvd player. Unless there is a reason for saying no, I will almost always allow him to "watch" a movie during this time (though he spends very little time actually watching it…he seems to like the sounds the trains make as much as he likes watching them.)
There is no structured activity during this time unless I feel that Sam is in need of a particular sensory output (i.e.: water play, sensory bin, etc.) or we have a scheduled play date with a friend. This is Sam's time to just "be", and play as he sees fit. This is the time where the majority of Sam's real "learning" happens. He is kinaesthetic, and needs to "do" and "discover" things in order to learn them. This doesn't work as well if I am constantly directing his play. 
At 4pm or 5pm, Jason (Dad) will come home from work and we will serve dinner.
The real work begins after that. Following dinner time, we will often engage him in "full body immersion therapy" (also known as "swimming" at the "pool" ) and/or some "gross motor therapy" (also known as "running" at the "playground").  We try to make sure that Sam gets at least 2 hours of Physical Therapy ("physical activity") a day. We like when he engages appropriately in Occupational Therapy ("being a kid") every day.  During this time, we are actively engaged in Speech Language Therapy ("talking to our child") and encouraging him to participate in social communication and building social skills ("getting him out of the house and into the world with other kids his age"). 
As you can see, it is an extremely involved process that necessitates several professional interventionists (i.e.: zero) to make sure that Sam has a "quality of life" as closely equivalent to a neurotypical child as we can get (i.e.: "no one wants their lives to suck, not even kids with Autism").
If we couldn't go swimming because of errands or other planned activities, Sammie always comes with us. We engage in his 'therapy' on the road, in the car, and even at restaurants. He also takes a nice long bath to make up for his missed immersion therapy.  
Once we get home, it's snack time (once again, in front of his favourite videos…*gasp* for shame…) and then off to bed for around 730pm. Sam now sleeps through the night (for the most part), the biggest win of the gluten-free/dairy-free diet. 
You will note that there isn't a section dedicated to behavioural therapy.  Don't worry- we haven't forgotten about it.  Yes, there is seldom a day that goes by where angry cries and tears don't come ("temper tantrums").  This is just part and parcel of dealing with Sam's reality ("being a three year old") and we understand that intervention ("love, comfort, and respectful validation of his feelings") is needed on an ongoing basis. Sometimes, these even escalate into full blown meltdowns, at which time immediate action is required.  Most of the time, this means ensuring that Sam has a safe environment and is able to allow his body to physically manifest its overload as quickly and painlessly as possible. We provide him rules on how he is allowed to meltdown ("supports" to make sure that nothing aggravates the situation") and there are always consequences when they happen ("extra hugs/reaffirmation, and usually a juice box since having a meltdown makes him thirsty. He will also usually get extra alone time to bring himself back to baseline and we will make sure that he has access to a low-stimulation sensory environment like his sensory room.")

And that's basically it. Our schedule in a nutshell. Now, obviously, there are some deviations, but aside from school, we do not currently utilize any additional support services. We do not currently have respite (though that is one thing we are investigating) or have any additional specialized services at this time. Frankly, we haven't seen the need for it- not in a long time anyway.

Admittedly, things weren't always this easy. It took a long time to teach and train a routine like this ("to remember that 'special needs parenting' is really just 'parenting' with accommodations") and make sure that everyone ("Zita and Jason") really understood what needed to happen for their child to live a normal life ("thrive to the best of his abilities")

There were many days filled with anger and frustration in those early days. There were many disappointments, temper tantrums, and full-on meltdowns to navigate. ("Ours")  It required the patience  and understanding of a Saint, and an iron-clad willpower. ("His") But as we soon as we dried up our tears, stopped our whining, and put our adult pants on, we realized that this ("Being Sam's Parents") was exactly what we had signed up for.

That's when we all began to truly live...

And, my friends, it truly is a beautiful life. 

Thursday, February 13, 2014

Violence And Autism: The Moral Justification of Violence

(This essay constitutes the second part of a three part series on Violence and Austism. Part one, a prologue to the series can be found here. Trigger warning: This post will contain discussions on violent crime, with references to filicide)

“Dehumanization, although a concrete historical fact, is not a given destiny but the result of an unjust order that engenders violence in the oppressors, which in turn dehumanizes the oppressed” 

I want to jump out of "Autism Mama" mode and into one that I haven't taken on in a very long time... Zita, "Sociology Geek" mode.

I have something to talk about, and it's not a pretty subject, but it is one that desperately feel needs to be addressed. I need to talk about violence. Specifically, violence towards Autistic children at the hands of their parents.

I don't want to talk about "why" it happens, at last not in the specific sense, or even how to prevent it right now- we will talk about those in my next post.

Instead, I want to talk about "how" this happens. How does a seemingly 'normal' parent go from "love" to "violence"? And, of equal importance, "how" do we, as a society, find a way to justify it, ignore it, and pretend that it is not happening?  

I want to talk about a word that is often tossed around in these dialogues, but seldom really explored as a concept:

"Dehumanization: The act or process of reducing people to objects that do not deserve the treatment accorded to humans."

Dehumanization is usually an ongoing process as opposed to a single act, and is a central theme in many violent crimes. It is most usually associated with war-time actions, as its characteristics are very clearly evidenced in highly militarized context, but it actually occurs in every day life on a variety of different social platforms. Dehumanization happens every day; it happens all around us...

When a woman is called a "fat cow", she is dehumanized. 

When a child is called a "wild animal", she is dehumanized. 

When a Cree man is called a "savage beast", he is dehumanized.

My son is being a "bear".... My sister is a "bitch"....

All of these terms, often deeply ingrained in the social subconscious, serve to minimize the human experience of the other, thereby creating a psychological distance between "them" (the subject) and "us" (the authors). 

The process of dehumanization is generally considered to take on two separate and distinct forms. The first is animalistic, and refers to the act of drawing a distinct parallel between the human being or sub-group in question and an animal, thus denying the human being's moral scope, intelligence, ability to self-control/self-regulate/self-determine, etc. Each of my examples above are examples of animalistic dehumanization patterns that occur in our every day language.  

The second form, mechanistic dehumanization, "occurs when the features of human nature (e.g. cognitive flexibility, warmth, agency) are denied to targets. Targets of mechanistic dehumanization are seen as cold, rigid, interchangeable, lacking agency, and likened to machines or objects."

One needn't work too hard to draw the parallels between the models of dehumanization and both the medical and social jargon used to describe Autism Spectrum Disorder, a neurological difference that is characterized by "difficulties in communicating and forming relationships with other people and in using language and abstract concepts." Of course, socially speaking, that definition is often reduced down to the epitome of dehumanizing phrases: that those with Autism have had their "soul stolen" away from them.

After all, can there really be any quality more human than to possess a soul. As James Allen put it,  "A man sooner or later discovers that he is the master-gardener of his soul, the director of his life."  Within this context of 'soul' is housed our autonomy, our moral character and our capacity for reason. 

Who are we without our 'souls'

Many bloggers, much more prolific and better able to speak on the Autistic experience than ever could, have tackled the subject of the dehumanization of Autism and why it's wrong. I'm going to let these advocates speak for themselves and encourage you to read at least the following blog posts to get you started:

"Dehumanizing" - Emma's Hope Book

"Non-Speaking Autistic Activist Responds to Suzanne Right of Autism Speaks" - Amy Sequenzia

But, as I mentioned earlier, I want to talk about the "how"- the actual process of dehumanization, and how it seeps so deeply into thesocial  subconscious that we hardly notice it happening. 

As such, I would like to introduce two additional concepts that are deeply connected to the dehumanization process and that are, in many ways, equally responsible for the violence against our Autistic children.

Infra-humanization and Demonization

Coined in the early 2000s by Jacques Phillipe Leyens, Infra-humanization refers to the "tacitly held belief that one's ingroup is more human than the outgroup." This is known as "ingroup bias". Beyond simply seeing the ingroup as being superior, infrahumanization actually moves towards the denial of human qualities, specifically love, empathy, cognition, functionality (Ha. Yup.) and consciousness. In short, infrahumanization values their experience of the human essence as being superior (if not exclusive) to any other human experience.

(See where I'm going with this...?)

What is particularly interesting about the concept of infra-humanization is that studies indicate that the more the 'outgroup' attemps to prove its humanity, the harder the 'ingroup' will rally against it and the more distinctly the lines between the two will be drawn.

In fact, this division can grow so significant as to lead to a third branch of the dehumanization process: demonification of the victim (or the 'outgroup'). The victim is seen not only as deserving of their punishment, but actually becomes perceived as the aggressor. Any action taken to protect and/or defend themselves is seen as an overt and deliberate attack on the ingroup. The victim becomes the enemy.

In their article "Dehumanization, demonization, and morality shifting: Paths to moral certainty in extremist violence", psychology researchers R.S Giner-Sorolla, B. Leinder, and E. Castano (1) outline how "moral uncertainty surrounding violent acts can be reduced, encouraging direct and indirect support for violence, before and after the fact" in extremist violence situations. They outline three specific pathways that can allow for moral reconciliation of violence:
  1. By dehumanization or depersonalizing victims, removing them from moral consideration.
  2. By demonizing victim: both removing them from moral consideration, and making it a moral duty to punish them.
  3. By morally shifting: moving the focus of judgment from harm and fairness to moral concerns favoring the ingroup. (1)
And through these three mechanisms, the ingroup is not only able to further justify the actions that have been taken (which, under any other context would be deemed heinous), they become actively engaged in implicitly or explicitly condoning further acts of aggression in the same vein. 

Now, many of you may already be making the logical leaps between what I have just discussed and the growing crisis of murders/attempted murders being perpetuated against our Autistic children, but for those who haven't, let me break it down a little bit for you.

1- TREAT THEM AS LESS THAN HUMAN: The world is told (by parents, practitioners, and even- in some cases- Autistic people themselves that Autistic people aren't really like human beings because they don't behave in the way that we have outlined as the parameters for 'human behaviour'. From the medical/practitioner point of view, this includes- among other things- labelling Autistics in terms of cognitive and adaptive functioning (low/high), describing them in terms of animalistic and mechanistic labels which trivialize their humanity, forcing them into prescriptive "treatment" programs that are fundamentally hinged on 're-wiring' their brains and/or on obtaining compliance based results.

From the legal point of view, it includes stripping Autistics of their rights to bodily integrity and self-determination, including but not limited to administering onto them body interventions otherwise applicable only to animals: (such a de-teething, de-barking) or, even more terrifying, invasive, untested treatments that can lead to illness or death.

Society- for their part- shuns, abandons and prays for a cure. At best, Autism therapies and treatments are mostly focused on 'normalizing' this outgroup population so that they are less obviously "Autistic". At worst, some people advocate euthanasia.

2- DEMONIZE THE VICTIM: It is extremely difficult to justify such extreme positions on a population largely comprised of young children. It upsets our frail sense of justice and ethics. So, to help the ingroup sleep better at night, we invent a monster. We take all the most challenging, most mysterious (ie: scary), and most different (ie: "inhuman") elements of the neurology and we create a superbeast poster child for Autism.

"THIS IS AUTISM" we scream. "BE AFRAID".  It will come and "steal your child".

And the lies begin. The lies about how Autism will destroy your home, your bank account, your other children, you marriage (myth vs fact)...The lies about how all Autistic children are violent and aggressive, and how you need to fix them before it's too late.

And all of a sudden, "Autism" has taken on something different than how it is defined. All of a sudden, it is no longer about a child's (or an adult's) brain. It is an entity completely enemy to be combatted.

We write posts about how hard it is to live with Autism (despite the fact that those writing these posts seldom actually "live with Autism" and are more living with someone who lives with Autism). We martyr ourselves on the alter of "Autism Parenting" (this, despite the fact, that children parents of Autistic children are far from the only ones who have to face the financial and social implications of parenting a child with severe disabilities.)

We post videos of children in meltdowns (oftentimes brought on by extremely contentious therapeutic practices), and make comments about how they are "wild" and "savage" and "dangerous". We show these to the world saying "Look at what we deal with. We need to stop Autism now."

This enemy that we have socially constructed must be stopped. The child must be saved. 

And all of a sudden, all of these invasive tactics seem so much more justifiable to the ingroup. There is a monster to be battled against, by any means necessary.  The person becomes secondary to the condition (ironically, since this is usually about the time that we would also start seeing pushes towards "person first identity", further distancing the child from the 'beast'). Combatting the enemy, by any means necessary, becomes the primary focus.

And what of those in the outgroup who aren't so keen on seeing their neurology demonized? What of those who are uncomfortable with the incessant attacks on their humanity?

First, we try to convince them that they are broken. First, we try to recruit them into self-loathing by propagating myths designed to perpetuate the culture of fear. We tell them that we can not love them, not for who they are any way. That we love the idea of who they could have been, but not who they are as they are.

When that fails, we attempt to discount them by saying that they are imposters in the outgroup, not really affected at all. That they can not speak for Autism as a whole because their cognitive abilities, language, daily and executive functioning levels are simply too high to be representative of the group. In essence, they are too 'human'

And when that approach fails, and they outgroup persists in insisting upon their rights?

Well, they become the enemy too.

All of a sudden, conversations like this one are allowed to take place: The Femininst Breeder Will Educate Autistic People About Autism.

And when the Autistics themselves, as anyone under attack is prone to doing, they will be further demonized.

Slowly, but steadily, the ingroup convinces itself that it is the victim.  That the outgroup are the real oppressors because they risk upheaving the perfectly laid out world order.


Having managed to convince itself that the outgroup is part of the enemy, and that the ingroup is at a very real risk of being further victimzed by them, it is a small but steady leap towards "justifiable" violence.

After all, at this point the ingroup has already determined that:
  1. Autism is the enemy.
  2. People with Autism are 'absent', 'stolen', 'soulless' and otherwise subhuman. 
  3. Autism makes people dangerous. 
  4. Anyone with Autism who denies that Autism is the enemy is also the enemy. 
  5. Autism can "get you", any time, any where, any one- it must be stopped.
  6. Autism must be eradicated, by any means necessary. 
And, in its twisted logic, the conclusion is clear: the life of a person with Autism is not equivalent to the life of a person who does not have it.  How, then, is it difficult for them to conclude that: 

     6. Violence towards those with Autism, in the efforts of eradicating Autism, is justifiable.  

And just like that, the moral paradigm has shifted, and what would have been considered horrific under any other circumstance is considered completely "understandable".

So, when something truly horrific like what happened to Issy Stapleton happens, our social subconscious has already been shifted towards justification.

"She did it out of love..."

"She needed more supports..." (a phrase that I will tackle in part 2)

"I understand her pain..."

"Maybe she thought that Issy would be better off..."

She is supported, emotionally and financially, because she is a member of the ingroup. We ignore the rage of those who are part of the outgroup. They are the enemy.

And the cycle continues.

Sure, society grieves. It is sad when children are hurt. It is sad when they are in pain.

But it not sadder than when they have Autism. Nothing is sadder than a child with Autism. 

And just like that, an entire society becomes complicit in the attempted murder of a child.

So who is responsible for tragedies like what happened to Issy?

I guess that's the point of this entire heavy-handed post...

We all are.

(In part two of the series, I will examine in more detail at implicit cognition, and its impact on violence justification. I will also address the question of  how to prevent these types of acts of violence in the future.)

References, not in hyperlinks:

Castano, Emanuele; Giner-Sorolla, Roger (2006), Not quite human: Infrahumanization in response to collective responsibility for intergroup killing. Journal of Personality and Social Psychology, Vol 90(5), 804-818.

Kelman, H. G. (1973), Violence without Moral Restraint: Reflections on the Dehumanization of Victims and Victimizers. Journal of Social Issues, 29: 25–61. doi: 10.1111/j.1540-4560.1973.tb00102.x

Bandura, A., Barbaranelli, C., Caprara, G. V., Pastorelli, C. (1996). Mechanisms of moral disengagement in the exercise of moral agency. Journal of Personality and Social Psychology, 71,364-374.

Waytz, A. & Epley, E. (2012). Social connection enables dehumanization. Journal of Experimental Social Psychology, 48, 70-76.

Wednesday, February 12, 2014

The "other" kind of expert

(This post is an introduction to a series that I will be doing on Autism and Dehumanization. Some of these posts may contain triggers for certain people as some of the topics will touch very sensitive material. These will be clearly outlined at the beginning of each post.)

Over the years, I have been fortunate to have many great learning opportunities.

I've studied singing with internationally acclaimed opera superstars.

I've studied political science and sociology from some of the finest academic minds in our country.

I've studied business management and best practices from some of the most innovative entrepreneurs in their industry.

You see, when one wants to learn about something, they go to the source.

As interesting as someone's first person account of a lecture on an archaeological trek might be, I'm the kind of person would rather talk to the actual archeologist who led the expedition. Assuming, of course, that there was no way for me to tag along and see the whole thing first hand.

Yesterday, I was ranty and ravey about parents not being the experts on their children. I've had the chance to have some really good dialogue on this post, and while I stand by my original statement, one reader made an excellent point: Experts don't always know EVERYTHING. But they know more than anyone else in the room. 

That is a fair statement. In some ways, parents know more than anyone else in the room about their kiddos, particularly when those kiddos are very young and are unable to really understand themselves or their own motivations. However, I would contend that- as soon as humanly possible- parents should be prepared to hand over the proverbial reigns and acknowledge that only their child can truly be the expert on themselves. Our goal, as parents, isn't to be the one who knows everything. It is to give our children (who are the real experts) the opportunity to advocate for themselves.  This is as true for typically developing children as it is for those with exceptionalities: in order to achieve sense of personal independence, all children must one day learn the skills to "speak" for themselves.

At this point in time, Sammie doesn't 'speak'. He communicates, but he doesn't speak. I am not sure he ever will, as he appears clearly more interested in alternative methods of communication than he is in using words...time will tell, and I will respect whatever voice he chooses to use.

So yes, given the definition above, I can accept that- at least at some point in our children's lives- we are as close to experts on them as we can get.

But, expertise itself is an interesting thing.

I remember one of my professors scoffed at being referred to as a sociology expert. He claimed that the field of sociology was so vast that no one could ever claim an expertise on it. Rather, most professors specialize in one of the hundreds of different areas within the discipline, and- from there- will even further refine their knowledge into a few very specific topics.

So, using his example, one would not be an "expert" on women studies.

One would be a student of women studies, who specialized in political theories of feminism, and has an expertise in Marxist/Materialist Feminism.

I always really liked that example as it implied that we are all lifelong students, even once we have achieved a level of expertise in our chosen field.

Bringing this back to our conversations on our Autistic children, it strikes me that this example applies just as easily to the entire Autism Community.  Within it, there are various levels of experts and specialists, each able to contribute very precise and valuable information to the picture, but not one being able to claim any sort of expertise on the condition as a whole.

We see this play out in the medical/therapeutic community by the different branches of specialists that interact with our children: Occupational Therapists, Speech Therapists, Physical Therapists, Behavioural Therapists, Pediatricians, Neurologists, Psychologists...the list is seemingly endless. Each of these individuals bring a unique and valuable insight into their specialized field of learning.

They are "experts". And we treat them as such.

But, by the definition offered above, expertise isn't necessarily something you learn in school. Otherwise, no parent could claim expertise on any area of child's life. There must be an element of lived experience that comes into play.

Surely, most of us could claim at least a certain level of expertise at our career. Or at our favourite hobby. Or in our favourite topic.

In our every day lives, we specialize all the time on the things that are important to us or that impact our lives in more tangible ways.

For my part, I've become a bit of an encyclopedia of Autism-related research. I have a gift for retaining information, particularly complex, scientific data, and am able to recall even the most subtle details of almost anything I read.

When we were getting Sammie diagnosed, I got into a passionate conversation with one of his diagnosticians about current trends in Autism research and was even able to send her several links on new articles that supported my positions. Her answer was "I've learned more about my own profession from you in one hour than I have in the past year."

(In case you're wondering, yeah- I was pretty proud of that one...)

So while I may be an "autism rookie" when it comes to parenting, I'm comfortable acknowledging that I am gaining considerable expertise in the area of "trends in Autism research", at least as far as a non-professional goes.

This lived experience model is the only employed by parents and professionals when it comes to parents being the experts on their children. Since parents spend the most time with their children, and see the biggest variety of behaviours and reactions, they are in the best position to advocate for their needs (again, until the child is able to advocate for themselves).

So professionals can be "experts."
And researchers can be "experts."
And parents can be "experts."

And we have no issues accepting any of those statements as being true.

But there appears to be a tremendous amount of resistance to the fourth kind of 'Autism expert'.  They are the ones we hardly see creeping up in research or being pointed to by professionals as sources. They are the ones that are mocked for attempting to forward their own unique lived experience. They are the people living with Autism, in the most literal sense of the phrase.

They are the Autistics.

Being those how are actually born with neurologies that are unquestionably similar to those my son has, it strikes me as incredibly odd that their point of view is so often rejected in conversations surrounding Autism.  From an academic standpoint, their information should be seen as invaluable qualitative knowledge that can shed light on countless phenomenons that we are only begin to uncover with conventional research methodology.

From the parenting perspective, I fail to understand how anyone would not benefit from a little 'insider' knowledge on what their child might be living.  After all, many of them are living similar things. This should make them excellent sources of information and opinion.

And yet, the resounding answer that seems to come from the medical and research community is 'we don't need your information' or 'you have nothing of value to contribute'.  Far too many Autistic minds are involved on the ground floor of research and awareness spreading campaigns. In fact, many of these campaigns seem to hinge on pretending that this community doesn't exist.

There is hardly a self-advocacy related thread that doesn't culminate in a mass response of "but you aren't like MY KID."  Parents, clinging desperately to archaic categorization labels like "high" and "low" functioning, claim that because Autism presents differently for some of the self-advocates (ie: they are verbal, and/or able to communicate, they appear to have higher cognitive abilities, etc.), that their lived experience is completely irrelevant when it comes to talking about the entire Autistic experience. Parents renounce the self-advocate pleas for identity-first language, claiming that only they can decide their child's identity, and ignore their appeals for inclusive language, including abandoning the focus on 'curing' Autism and instead re-enforcing the need for additional supports and long-term planning.

The pervasive mentality seems to be that because they are different from our children, that their information is completely irrelevant, a position that is completely untenable when you accept that every single person on the planet is different and unique. The entirety of human knowledge is based on the cumulative accounts of every individual experience, taken as a whole. Just because we have not directly experienced something doesn't mean that we are unable to accept or comment on its presence. I never took physics, but I can still tell you the formula for the theory of relativity...

Why are we ignoring this incredible source of untapped knowledge.  I have learned more about my son's sensory challenges in one conversation with another SPD Autistic adult than I have from reading dozens of books.  They explained to me that it was possible that what I was interpreting as a need for deep pressure was actually a need for vestibular imput. They were bang on. A little bit of balance integration added into his sensory diet has been tremendously helpful in helping him regulate himself this week.

It hardly seems responsible to our Autistic children to discount lived experience expertise that could help them based only on the fact that Autism is a spectrum disorder that presents different for every individual.  Surely we are able to glean insights on the things that are relevant and discount the things that wouldn't be relevant for every individual case?

For my part, I feel like I have no choice but to open my ears and listen.  Just as I am seeking out as much information from the medical community as I can to offer my son all the supports that he needs to enhance his quality of life, so must I be prepared to seek out information from other sources. Sometimes, those sources are other parents who have lived the same experiences I am living. Sometimes, those sources are other parents whose children don't have ASD, but who are still able to offer me valuable insight on child development in general.

And yes, sometimes, those sources are the adults with Autism who open my mind and my eyes to know clues about my son's life every day.  In fact, as days go by, it is becoming increasingly evident to me that they very might be the most important source of information available, to me and to the entire Autism community.

So why isn't anyone listening?

That very well may be the most important question facing the Autism community today.


Tuesday, February 11, 2014

You are NOT an expert on your child

This is going to be a short post. Actually, probably more of a vent. No, scratch that: it's definitely a rage-style rant (which means "Zita's friends list is about to drop off by 10%")

Parents (of ASD children or otherwise):  YOU ARE NOT THE EXPERT ON YOUR CHILD.

I don't care how often you say this yourself.

I don't care how good it makes you feel at night to wrap yourself up in the idea that you know exactly what is best because you are the "expert".

I don't care what the teachers, the doctors, the therapists, or your puppy says.

I'm going to repeat this again:


No one can be an expert on another human being except THAT human being.

Which means that, at best, YOUR CHILD is the expert on HIM/HERSELF. 

Let me ask you this:

If I were to call up your mother today and ask her to describe your personality in exact detail, would that description match how you would describe yourself? How would she describe your face? How would she define your job? What would she see as being your major triggers, the topics that make you angry? What does she think your learning style is? 

My mom and I are basically best friends. We lived together as adults and co-parented (along with my amazing husband) Sammie for the first two ish years of his life. Now, we live separately but still turn to each other on most things. She is my number one source of advice.

But is she an expert on me? Hells no.

Not on me the adult, and DEFINITELY not on me the child.

There is TONS about me that she doesn't know. There is TONS about me that I kept hidden and she only found out about years later.

Want a clear cut example? She didn't find out that I was raped at 15 until I was 19. Four years, she watched her daughter struggle with depression, food issues, anxiety disorders, self-harm, horribly abusive relationships...And how did she find out? I left a e-diary entry open on the computer in which I mentioned it in passing.

Four years later.

That's a long time in parenting years.

And this is despite the fact that she and I were very close. I didn't tell her. I didn't really tell anybody.

We all have secrets, and these are part of who we are and how we tick. Usually a big part of it, actually.

Beyond that, I spend hours and hours every day talking to my husband. I fell in love with him when I was just a young, naive university kid and grow more adoring of him every day. He is my perfect match, the ying to my yang, and the reason why everything in my life is possible.

And every single day I learn something new about him.

Yup. Over 3000 days into our relationship, after almost 5000 days of knowing each other, and I am only beginning to scratch the surface of what makes him the amazing person that he is.

I know more about him than any other person on the planet...but I am NOT an expert.

My son Sammie doesn't speak with his voice. He communicates with his facial expressions, his body, his behaviour, his touch, his eye gaze, and every other instrument available to him...but he doesn't speak.

So I spend an awful lot of my time trying to read between the lines of his behaviour and his signals. And have the time, I get them crossed. At least 10% of my day is spent wondering what is happening inside that beautiful little head of his.

How-- HOW???--- could I ever claim to be an expert on someone who has only said a handful of words to me in the totality of his life? When I spend half my day wondering why he took his socks off, or where the tablet went, or why he suddenly seems to be into Charlie The Train instead of James.

Even when your child does have words, if they are under the age of 6 or 7, they are only just beginning to understand how to put those thoughts, feelings, and opinions into them.  They are only starting to create a worldview for themselves, to understand their own value system and to become their own actualized person.

Most of us, whether we are young children or grown adults, can't even claim to be experts on ourselves?

So why -- WHY??? --- do we keep perpetuating this myth? Why do we create this unachievable standard by which our parenting should be judged?

After all, if we are experts, we should be able to give you a detailed account of why every meltdown happened. Right?

We should be able to explain every single food aversion, including why some are a matter of preference and others are sensory issues. Right?

We should be able to decipher exactly when our child is on the brink of sensory overload, and accommodate the space accordingly. Right?

No. Of course not. Because while we may be the most knowledgeable on our child, while we may be the people who spend the most time with them, and while we may even be the people who understand them the best, NO ONE CAN BE AN EXPERT ON ANOTHER HUMAN BEING.

You only get what they show you, and usually that's only a tiny glimpse of the big picture.

No, we are not experts. And we should not be expected to be. No parent is an expert on their child. No parent has this all figured out. No parent can predict the behaviour or outcome of every situation their child find themselves in.

We are all flying blind.

Because human beings are not static things. They grow. They evolve. They change. They are unpredictable. They are amazing. They can not be defined by their past or boxed into a specific future.

They are far too complex a subject for anyone to ever claim an expertise.

And assuming that you are an expert authority on another human being can be extremely dangerous. It can lead you to miss signals and signs that might have otherwise been picked up on. You may think that they are just being "moody" when it fact they are deeply depressed and need help. You may think that your child has a "wonderful relationship" with that trusted family friend, only to learn that it was quite the opposite...What you may assume is a social deficit might actually be a sensory overload. What you think they love to eat might actually be what is making them sick.

Pretending that you ALWAYS KNOW, means actually HAVING TO KNOW.

That's a lot of pressure for a parent.

So, I am releasing myself from the "expert" myth.

I am NOT an expert on my child. Half the time, I am just making guesses based on what I've seen in the past and hoping that I don't screw him (and I) up too badly along the way.

And there are LOTS of people out there who may understand certain things about him better than I do. Spending time with someone is not necessarily an indicator of understanding them.

So I'm going to ask everyone I can, everywhere I find them, to help me decipher the clues.

I may not be an expert- but I'm one hell of a researcher, and I'm going to make damn sure that my "guesses" are as educated as they can be.

Monday, February 10, 2014

This blog is not for you

"If you had known that your son would have autism, would you still have had him?" they ask me.

Sometimes, late at night, thoughts that I work so hard at pushing away during the day time creep out of my subconscious and plant themselves so firmly in my brain that there is no way for me to ignore them.

I lie awake, my head spinning, with these thoughts taunting at me- like shadows dancing on the walls of a candlelit room.

It is often in these dark hours that my brain finds fleeting moments of clarity, of epiphanies.

Sometimes, a sleepless night can change my entire world…

I've had a few of those nights lately. And I know that I now faced with a few choices to make.

Sammie is Autistic. This is something I understand and accept, with no difficulty and no reservations.

It is his identity. It always has been.

He life hasn't changed from one day to the next.

But mine has.

Somewhere in this journey, I have become an "Autism Parent".

It's not a title I would have chosen for myself. It's not a community I expected to join. It's not an identity that I was born with.

And yet, somehow, it is what it is.

Does this mean that my entire life will revolve around Autism?

Ha ha.

It already does. ;)

But it all seriousness, what does this mean? Where do I fit in? There are clear camps in this "autism community"…do I really belong to any of them?

There is a lot of division and anger between the Autistic Self-Advocates and the Autism Parents. In many ways, I can understand why. Autism, while beautiful, can also be complex, challenging, and downright difficult to manage. It creates very unique life challenges for all who are touched by it, Autistics and family and friends alike.

Yes, Autism Parenting is deeply impactful. It is a life altering change- one that is completely out of your control.

Change can be terrifying, even when it is change for the better.

Yes, it's true. Some days are hard. Some days take the wind out of you. I am not going to sit here and pretend that there are not moments of weakness where I ask myself "How did I find myself here…???"
There are days were I feel trapped.

There are days where I feel alone.

And so we find ways to cope as well as we can. And for many of us, that means sharing our thoughts through writing and building ourselves a community of people who understand us and to whom we can relate.

It's human nature to want to not feel alone.

And my experience, as an Autism parent, is an important one. It is one that should be validated and treated with whatever amount of respect one treats human beings who are doing their best.

Whether I like it or not, I am part of the Autism Parenting Community.

But there is another community within the world of Autism: The Autistics.

This is their world.  They are the ones feeling the meltdowns and the euphoric joys that can come from a ray of light reflecting on a mirror. They are the ones who live the social interplay, all too often as outsiders being told "look what you could have if you only tried hard enough." They are the ones trying to make their way through a world that is designed to make it difficult for them.

They are the only ones living the Autistic experience.

 This is their world, and I am but a tourist. 

Apparently, understanding this makes me controversial. I've gotten a fair amount of emails/messages sending me gentle warnings about not 'aligning myself with the self-advocates'. I can feel walls going up around me. People who were once so friendly and warm, suddenly looking at me as if I were now sleeping with the enemy.

Because why? Because I have said that I value their experience and input on my son? Because I have said that I believe that Autistic minds have always be here and that they have a great deal of good to offer the world? Because I would not change my son in any way that he didn't want changing?

Because I know my place in the Autistic community is to be supporter, not the person holding the bullhorn?

I have no idea how to navigate the vitriol and hatred that I have encountered in the past few days. I have no emotion means of justifying the abuses that I have witness. I have no ability to pretend it didn't happen, or to say that somehow it is ok because I had a hard day, or year…

As I watched these self-advocates getting attacked, all I could think of was this:

My god, what if someone was saying this to Sam? 

Because, in a sense, they were. They just didn't know it.

These people who claim to be the defenders of "low functioning and non-verbal children with autism" everywhere, they were saying these things to other human beings who were desperately pleading for their right to live.

Pleading for my son's right to live.

I don't know how to reconcile what I witnessed these past few days, but I will say this:

If that is what Autism parent advocacy looks like, I want nothing to do with it. 

And yet, I'm not Autistic.

So where does this leave me.

Should I even bother continuing to write? Who would I be writing for anyway?


I write for Sam.

He's the only person I owe any loyalty to.  And one day, he will grow up and he will read my journey. And when he does, I hope he's proud of how his Mama talk about him and how she talked to and treated others.

"If you had known that your son would have autism, would you still have had him?"

Unquestionably. Undeniably. Without any reservation.

If you even have to ask that question, then this blog is not for you.

Saturday, February 8, 2014

I'm no heroine

It's been a bit of a surreal week. 

I have so much to write about that I don't even know where to start, so I'll give you some coles notes. 

1- On Thursday of this week, we were finally able to drop the "or something" from Sammie's pseudo-diagnosis. He has Autism. He is Autistic. The doctors told me. My answer: "Duh." I will write more on this later...

2- The process, despite having a completely predictable and happy end result, was horrible. Horrific. There are few things in life worse than watching your kiddo get treated like a lab rat…except, of course, being the kiddo who is being treated like a lab rat. Sammie was AMAZING through it all- that kid has an iron-will and is just so incredibly awesome that everyone he ran into fell in love with him. But it was not easy. Not for him, and not for us.  I will write more on this later too…

3- On Friday night, 30 ish of our closest friends and family members came over for our "Sammie Is Autistic! Let's Have a Party" neurodiversity celebration.  In our group were friends that we have known for over a decade. There were families who also have special kiddos of their own, and who are walking down similar paths. There were even a few special guests who have been like guide posts in this sometimes overwhelming journey.  The love and celebration of Sam was the most amazing thing I have  ever witnessed. I am moved to tears at the way his loved ones have accepted and uplifted him. And yes, I will write more on this later…

4- I took part in my first major online Autism Advocacy debate. For a long time I have been a lurker, feeling a little bit like an imposter since we didn't have a diagnosis for Sammie yet. But as I watched a self-proclaimed social-justice crusader tear apart the community that my son (and, vicariously, myself) now belongs to, I could no longer keep quiet. It was like a force inside me calling me to action. For the first time, I feel like I am involved in a social movement from the ground floor. I am part of a revolution in how people talk about, think about, and treat the Autistic community. I will not allow this world to mistreat my son. Oh yes, the mama bear claws came out. And, oh yes, I will write about this later. Probably next post. Cause, two days later, I'm still all riled up...

5- This thread connected me to an amazing group of self-advocates, many of whom I have been following from afar for quite some time. Through the past two days, I feel like I am finally "at home" in this Autism world. I have found those who think like me and who love my son for who he is. I have found those who are even better translators than I am. I have people to whom I can turn when I have questions. I have found people who aren't only on the group floor of the movement; they are the movement. These people have stood up and proudly said that they refuse to be discounted. They refuse to be rejected. They refuse to be ignored. They are proud of who they are and of what they have to offer the world. I am sure that I will write about this a lot. These people have joined Sammie in forming my community of Autistic muses….

6. And amazingly enough, these heroes think I am a hero. They think I am amazing. These people, who should be celebrated at every opportunity, celebrated me. In some ways, it seemed like they were even surprised that people like me existed. 

And that's what I am going to write about tonight. 

"I'm no heroine."

Ani Difranco, in all her wisdom, wrote these words many years ago about her struggles as a feminist. 

"I'm no heroine
at least, not last time I checked
I'm too easy to roll over
I'm too easy to wreck
I just write about
what I should have done
I just sing
what I wish I could say
and hope somewhere
some woman hears my music
and it helps her through her day" 

I never understood these words as a kid. I remember thinking to myself, "Of course you're a heroine! You are the voice of my generation!" I remember wondering if it was just false humility. 

Now, 20 years later, I wonder if I don't kind of get what she was saying. Or, at the very least, her words have taken on a bit of a bigger meaning to me. 

I'm no heroine. I am not a super parent, expert mama, mighty advocate doing extraordinary, amazing things. I am not special. 

I'm just Sammie's mom. 

He's the special one, trust me. 

Loving this kid for who he is is quite possibly the most natural and easy thing in the world. 
Accepting that he is different, not less, and celebrating what makes him unique feels like common sense.
Assuming that there is nothing he can no do is fundamental to the core of my being. 
Believing in the language of his body, reading every movement, seeking the meaning in every cry, is part of my essence. 

I am his mother. 

Isn't that what this gig is supposed to be about?

How have we come to be so disconnected from each other as to fear the unknown and to rally against those who are different, coming at them in hoards like predators circling their prey?

Is this what social skills look like? 

How have we come to reject people based on their difference- even those differences that present as deficits- instead of embracing them for who they are and what they can do?

Is this what empathy looks like?

How have we resorted to needing infantile labels to describe and categorize everyone based on a subset of personality differences, codifying these into manuals and replacing names with numbers?

Is this what Executive Function looks like?

How have we come to reject jumping, spinning, flapping or rocking as being completely unusual and unacceptable patterns of behaviour, but seem to elevate fixations on electronic devices, televisions, alcohol, and so on?

Is this what self-regulation looks like?

How have we reached the stage where we can look into the faces of children and see nothing but impairments instead of beauty and mystery?

Is this what facial recognition looks like?

How have we reached the place where we can arrogantly claim authority over another person's neurology, another person's identity?

Is that really what being allistic should be?

The sad fact of the matter is that I am completely lost right now. Because there is absolutely nothing that I have done in the past week that should fall outside the parameters of what loving, engaged, connected parenting should look like. I accepted my son. I accepted his peers. I listened to their stories. I validated their right to exist. And I promised to treat my Autistic child the way that I would treat his sister or any other child in my life: with compassion, caring, integrity and respect.

Love. It really isn't complicated.

And it shouldn't be inversely proportional to the amount of medical acronyms that proceed your name.

I am not a heroine. At least I hope not. Instead, I hope that I am pioneer. That there will be hundreds, thousands even, who come after me, and out do me.  I hope that, one day, the way I parent my son will be seen as outdated and archaic- prehistoric attempts at acceptance. I hope I am a beginning…not an end. 

I am no heroine. I'm just writing a story. The real heroes are the ones who are living it. 

Tuesday, February 4, 2014

Twas The Night Before Diagnosis

Twas the night before diagnosis
And lying in bed
Was a mama bear stressing,
Wild thoughts in her head.
Will he show them his smile?
Will he look in their eyes?
Will they see that he's special,
That he's my perfect little guy?
Will they treat him with kindess?
Are they more than lab coats?
When he gets his diagnosis,
Will they make us feel hope?
Yes, they say nothing changes
When those letters, they add
But I know in my heart
Things will change, just a tad
Things will start to get clearer
We will gather more clues
And his voice will join others
Who are Autistics too
He belongs to a community
I can now start to see
These are more than just letters
They're an identity
So, dear doctors, I beseech you
As you take your dictations
See the competent child
Who can surpass expectations
See a child who is gifted
See a child who is bright
See a future unhindered
And we'll all be alright ;)