"Autism Parent" and the Horrible Duplicity of the "Autism" Label

A few weeks after Sam was officially diagnosed with Autism, I was having a chat with another mom at an indoor children's play place. Young and impeccably dressed in her skinny jeans, immaculately coifed hair and super-trendy looking "Proud Autism Mom" t-shirt under a fake leather jacket, I could tell right away that she and I were not cut from the same cloth. After all, I'm not entirely sure I was wearing matching socks at the time, and the odds are pretty strong that the pair I was wearing actually belonged to Sam.

But I knew- deep inside my gut- that it was only a matter of time before she came up and said 'hi'. After all, 'Autism Parents' are a community. We are all automatically bonded...right?

Given Sam's propensity for 'happy flapping', I knew she would spot us almost instantaneously. And I was right.

 She approached me, with a big smile, and I braced myself for what I knew would be an extremely awkward conversation that would leave me feeling significantly more socially-defunct than Sam ever has been.

She was friendly enough, and immediately (predictably) launched into her 'Autism Mom' speech. Her daughter, whom she described (within ear shot of her) as an "extremely high-functioning Aspie who is so smart but is an emotional roller coaster and a total nightmare to parent" had been diagnosed at age two, almost three years ago. "It was a total shock", she said.

I didn't say much. I'm not really good with strangers.

"How about you?" she asked. "When did you know Sam had Autism?"

"Pretty much from the day he was born." was my seemingly unexpected response.

"Oh? Because he didn't make eye contact or want to be touched?" she pressed.

"Nope. He loved being snuggled and the eye contact thing comes and goes. But I just knew. When he looked at objects, he looked at them differently from other babies. He didn't just look at them, he experienced them and wanted to understand them from every angle. He was different- we always knew that. The question was whether or not Autism was the best explanation for those differences, which is why we had him diagnosed. But Sam was born Autistic."

{predicted, awkward pause}

"You mean, that he has Autism right?" {Awkward laugh.} "After all, he isn't defined by his disabilities."

And there it was. "Person-first language" in all its condescending glory.

Being relatively new to the person-first debate, I admit that I didn't say much. I nodded, agreed, and came up with some excuse to escape the situation as soon as possible.  Within minutes, her daughter became very upset and needed to be removed from the space. I felt horrible for her, but extremely relieved for me. But the whole experience left an extremely sour taste in my mouth for weeks to follow.

Most of us have heard it, in some form or another:

Image description: Image is of words on a white background. Quote says: "Labels go on soup cans. Autism is a diagnosis." Font is similar to child's hand writing, and word 'Autism' uses rainbow coloured font.

It can take on many forms, but it seems to always come down to the same message:

Image description: Image is of a silhouette of a human head on a gold back ground that appears to be radiating light from the head. At the centre of the head is a puzzle piece cut out shape. At the top of image is the following quote: "Autism may make my child HOW he is but it does not make him WHO he is." - Stuart Duncan" At the bottom of image are the words "Brain Balance of St Louis/Edwardville")

"My child is more than a diagnosis. He is a person. He has autism but he is NOT autistic."


We'll all heard these arguments before. Whether you are a disabled person or are the parent of a child with a disability, you've likely had someone explain to you the importance of "person first language". They will tell you that disability, in this case Autism, should not define the child. Instead, we should focus on what the child "can do, and not on what they can't do."

Many people much more capable than I have written on this topic extensively. I would recommend taking the time to read the following articles:

Identity and Hypocrisy: A Second Argument Against Person-First Language by Autistic Hoya

Why I dislike "person first" language- Jim Sinclair by Jim Sinclair

Disability first: autism is not an accessory by Illusions of competence

Remember autistic & person aren't mutually exclusive! Language, again. by Radical Neurodivergence Speaking.

As for me, I've been pretty black and white about my stance on this. Autism is not a set of behaviours, nor is it defined by the inability to perform tasks. Autism is a neurological difference, present at birth and scripted into genetic codes (for more on the definition of Autism that we use in our household, please see this fantastic post, What Is Autism?, by Nick Walker).

So when I say that Sam is Autistic, I am neither defining him by what he can do or what he can't do; I am describing him by how his brain (probably the most fundamental part of who he is as a human being) functions and by how this set of differences sets him apart from people who are not Autistic.

I am not 'defining' Sam by his diagnosis. I am not defining Sam by anything.

Sam is a human being who has the right to define himself.

(Warning: I'm about to put on my 'sociology hat again'. Proceed at your own caution)

You see, the thing about labelling theory is that human beings have a tendency to want to classify, categorize and define everything. We like to create order out of apparent chaos. We label instinctively, usually subconsciously, and we do this to socially-control behaviour.

Labels can be grouped into two major categories: Normal (or 'abiding by social norms') and Deviant (or 'deviating from social norms')

In labelling theory, the idea is that people conform to their labels. So, generally speaking, if someone (or something) is describe in negative ways, people become stigmatized by their label and 'othered' by society. This can lead to a reenforcement of the deviant behaviour as it can be extremely difficult to reintegrate into the social world once one has been stigmatized and excluded from it.

So, you can see why we would want to be very careful about 'labelling' people in ways that promote stigma.

Unfortunately, in many cases, the zealous movement of 'person first language' actually reenforces that which it is trying to combat. By stating repeatedly that Autism is a (implied 'negative') label and should not "define" our children, what is inherently being done is underscoring the idea that Autism is something that should be perceived as 'deviant', as opposed to a naturally occurring divergence from normal.

What we are inevitably doing is highlighting the deviancy of disabilities, and reenforcing the very principles that lead to stigmatization.

This is why we don't say things like "Jane Doe is a person who has homosexuality". (Well, at least we don't anymore...up until 1974, we would have said "Zita is a person has Homosexuality Disorder." because it was classified as a mental illness, using the exact same criteria and diagnostic manual as we use for ASD. Read more about that rarely talked about tidbit here.) The normalization movement within the homosexual community (see Cass Identity Model, specifically "Identity Pride" and "Identity Synthesis") demanded that normalization happen on a global-scale and not only within the LGTBQ community.

In many ways, the process of identity formation of the Autistic community parallels that of the LGTBQ movement, and it is exciting to see how Acceptance, Pride and Synthesis are being promoted throughout massive platforms. It will take time, but the message is spreading and the norms are changing. I suspect that within Sam's lifetime, we will see a massive change in the language surrounding Autism, both in the medical field and socially. And, I suspect that I will fall on the 'right side of history'.

All of that was a really, really long winded description to get to my point.

I'm all about identity-based language.

But what I am not all about is identity-appropriation. 

If you go back to my original story (assuming you can remember that far), the parent who chided me for my poor language choices was wearing an Autism t-shirt. A "Proud Autism Parent" t-shirt, to be exact.

This is a phrase you will see a LOT in the Autism community. Autism, despite being a diagnostic descriptor, is presented as being something that the entire family lives 'with'.

Not 'is affected by' or 'impacted by'.

Lives with.

Think I'm exaggerating? Think again.

Image description: Top half of Image is of a black and human eye, with tears streaming down. The pupil and iris are coloured puzzle pieces, interlocked. The bottom half of the image has the following quote in white words over a black background: "Autism causes stress, anxiety, depression, isolation, money, marital and family problems. Autism is a constant worry & is the unknwon. What can we do to change this? Be strong, tay positive, stick together, support each other,  love each other & fight for what we believe in...Our children. X Spectrum Superstars.

In the meme above, Autism is described in entirely negative terms and the "children" are treated almost as an afterthought. Moreover, there is no indication whatsoever that these children grow up to become adults who are still Autistic. The "Autism" experience is described entirely from the perspective of the parent, with the Autistic person's experience not being considered at all.

Image description: Image is of black words on a white background with two puzzle-piece ribbon symbols framing the title "Autism". Quote reads: "In what can feel like a lonely world at times, sometimes all it takes is another Autism Parent to hold out their hand and say "I understand"...for we speak the same language, the language of Autism, and we keep each other strong, we are Proud Autism Parents, and together the world is no longer a lonely place. Looking In/Looking Out - Our Autism and ADHD Family.

 In this case, the Autistic child's experience isn't even acknowledge. Once again, the entire focus is on the experience of the parent and of their 'loneliness'. The parent is the one who 'speaks' Autism, and they are the ones who build the community.

I could pull out another fifty or more examples of this, but I think you get the point.

And if you don't, let me spell it out for you clearly:

The vast majority of the dialogue regarding the experience of Autism is being had by people who do not 'have Autism' (are not Autistic). 

You see, while being "Autistic" is socially perceived as deviant and a negative label, being an 'Autism Parent' is socially perceived as an admirable and positive quality (which I wrote about yesterday). So while we shun the 'Autistic' label, we freely apply and even encourage the label of 'Autism Parent' and revere those who proudly wear it.

Therein lies the horrible irony of the Autism label.

The very same people who would chastise you not to define their child by their disability define themselves by it. This, despite the fact, that they are only vicariously affected by it.

It is extremely difficult for me to put into words how not okay this is, but I'm going to try.

To do this, I need to introduce yet another concept: Cultural appropriation.

(Note to self: Maybe this should have a been a blog series instead of one colossal post? Duly noted for future reference.)

Put simply, cultural appropriation is the act of inappropriately taking and using cultural artifacts/ideas/symbols etc. from one culture (usually in a minority setting) and using them inappropriately in your own culture (usually by the majority stakeholder).

There's been a lot of writing about this lately, from Miley Cyrus and 'ratchet culture' to the hipster headdress trend.

Suffice it to say that the things that define a culture hold an important and semi-sacred value in their traditions, customs, language and history. It is not ok to use these elements without an acknowledgment and respect for their importance, nor is it ok to devalue them by negating their cultural importance.

In short, unless something belongs to you and is part of your experiential heritage, don't claim it as your own. 

So, what does this have to do with Autism? Well, everything actually.

Culture is often only thought of in terms of race and ethnicity. But the truth is that, in the anthropological and sociological sense of the word, culture extends far beyond that and refers to the subcategorization of people into groups that are dictated by common phenomena beyond their physical characteristics.

Image is of a chart defining culture. At the top of the chart is the word 'culture' and extending from it are the words Tradition, Custom, Language, Ethnicity/Race. *I will be seeking assistance in how to describe this graph accurate, so please be patient with me as I attempt to do so.

The concept of Disability Culture is a relatively new concept, likely due to the fact that, up until recently, people with disabilities were not considered 'human beings' by medicine, the law, and society. However, today- as evolutions in technology have allowed for disabled people to have more access to self-advocacy and as laws/practices are starting to evolve away from dehumanization (far too slow, but that's another blog post topic), the world is beginning to recognize that there is, in fact, an entire culture surrounding the experience of being disabled. This culture is being explored through art, music, writings (political and apolitical), clothing, technology and the development of social language.

This culture is not only valuable for its numerous contributions to society. It is valuable in that it is acting as a catalyst of empowerment and change for people with disabilities of all types and severity. 

However, not all cultural elements are reaching social-acceptance at the same rate. While society is leaning more and more towards acknowledging that physical impairments do not limit one's humanity (as evidence by the massive shift towards mobility-friendly access in public spaces), many forms of disability (particularly social, mental, and cognitive impairments) are still incessantly dehumanized and those within those subgroups are continuously the subject of stigmatization. 

So while it would be seen as completely inappropriate for a mother of a quadriplegic child to say that "they" (referring to the family as a whole) are paralyzed, we do not bat an eye at the idea of an "Autism Parent" saying that the entire family "lives" Autism. 

In fact, in the 'Autism Parent' community, it is not at all uncommon for parents of Autistic children to actually claim a better knowledge and understanding of Autism than Autistic adults, a trend that is deeply terrifying. 

So, not only are they taking away the cultural artifacts of Autistic people (including self-identifying language), they are actually attempting to minimize their experience and kick them out of their own sub-culture. 

What they are attempting is cultural genocide.  (Which pairs nicely with the actual genocide-based advocacy of 'cure' based groups like Autism Speaks)

When the "Autism Parent" claims that title as their own while simultaneously stripping their children of the right to self-identify, they are saying, beyond the shadow of a doubt, that the Autistic person does not have the right to their Autistic experience. They are saying that Autism is about the parent, not the Autistic child. And they attempting a mass exodus of the Autistic experience within the Autism culture and community. 

What this boils down to is simple: If they can not rid the world of Autism, they can disempower it enough that it can not fight back against the stigma and will remain marginalized. In this way, the conversation will remain focused on the needs of the parent and the families, and not on the needs of the Autistic person. This contributes to the further stigmatization of the Autistic person, as well as the continued elevation of the "Autism Parent", thus perpetuating the cycle of oppression.  

As long as we continue to allow for dialogue regarding services, needs, supports, and what it is like to "live with" Autism to be dictated by us, the parents, and not by the Autistic people themselves, Autistic people will never be able to achieve social normative status and live in a world where they are not dehumanized and demonized. 

So please, don't call me an "Autism Parent'.

And please, stop calling yourself one too. Especially if you are not in full support of the Autistic self-identity movement or use 'person first language'. 

And, unless you are Autistic, do not say that you 'live with Autism'. 

If you want to support your child/sister/aunt/friend and all Autistic people in the world, start by respecting their culture, respecting their right to self-identification, respecting their right to self-autonomy and respecting the fact that it is time for parents to take a massive back seat in the conversation.

Unless you have Autism, you do not know Autism. 

You are not an "Autism Parent". You are your child's parent, and that is all. 

End of story. 

Rant: On "Autism Parents" and Superheroes

I’ve always felt a little on the ‘outside’ in my life.

I’ve generally never had a hard time making friends, and have typically been readily accepted in most social circles, so this feeling hasn’t necessarily been due to any external forces.

But I’ve always known that, on many levels, my mind works differently than many of my peers. I process information very rapidly. I process emotions very (very) slowly. I experience the world more through sounds than I do through any other sense, and often operate a bit on autopilot when things get too overwhelming.

And, for better of for worse, I have a tendency to reach very different conclusions from my peers when presented with the same set of information.

Being a person who approaches things pragmatically, forging a community- in the ideological sense- has not been something that has come easily to me. There is no one personal philosophy that defines me enough that I feel like I can connect to others through it on a global scale.

While I breastfeed, co-sleep, baby wear, and follow the vast majority of the principles of “Attachment Parenting”, it’s never been a label I have related to. I have always considered myself to be a bit of a hybrid between an anthropological parent (ie: parenting in ways that help society function at its fullest, with practices that change and evolve as society changes and evolves) and a scientific parent (ie: parenting in ways that are dictated by healthy biological development, no different really from our animal counterparts), and my research in both of these areas has fuelled the decisions that Jason and I have made regarding our children’s early rearing.

Now, don’t get me wrong. I love my “AP Parents”. They are some of the most beautiful and deeply connected people I have had the pleasure of meeting. But I have not generally applied the term to describe myself.  I always considered our parenting to be too complex to be summarized by a set of doctrines and practices.

I don’t “AP” parent.

I just parent.

And, for the most part, that lovely community has always responded with kindness and understanding: We are here for you regardless of how you define yourself. We are your tribe.

Now, as my children are growing older and their distinct personalities are emerging, I am finding myself once again wandering within a community, feeling like an outsider in a bit of a foreign land.

You see, I’m not convinced that there is any “community” more defined, more proud, and more present than the “Autism Parents”, at least not in my own particular neck of the parenting world.

I know some amazing parents of Autistic children. Truly I do. And I would consider some of them to be friends that have provided me guidance, support, and friendship in way that has not often been paralleled in my life.

But I am not an “Autism Parent”.

And every day this distinction becomes more and more apparent to me.

Unlike the ‘Attachment Parent’ label, my reaction to ‘Autism Parent’ is a much more negative one. Not only is this not a term I relate to- it is a term that I reject outright. It is a term that I find offensive on multiple levels, not the least of which being the fact that Charlie does not, at this time, show any indication whatsoever of being Autistic and how I define my parenting experience should probably not completely exclude her from the dialogue.  She is my child, as much as Sammie. She is not an after-thought.

(I also have massive issues with the double-think required to use this type of terminology, but that’s a story for another post.)

(Come to think of it, there are a whole lot of things that I hate about the “Autism Parent” culture and I suspect that I will have an entire series of posts dedicated to just this topic…)

(But, for now, one thing at a time...)

One of the things that really gets to me about the ‘Autism Parent’ movement is the idea that somehow being the parent of an Autistic child has made me “more special” than other parents. And not only more “special”, but “better”- more powerful, more engaged, more dedicated, more patient, more, more, more, more, more.  

The memes abound. There’s a new article about it every day.

Autism Parents are different from all other parents.  They simply ‘love’ their kids more.

Now, I’ve met a fair amount of parents of all walks of life. And I have one thing to say about that:

Bull shit.

Let’s put one thing to rest once and for all:

There is NO prerequisite training, test or other screening process for having an Autistic kid.

This is genetics, people. It’s the combination of DNAs, all interplaying with each other over the course of generations.

NO. God did not hand-pick ‘special people’ to have ‘special kids’, and if he did, I would sure like to have a word with him about the fact that thousands of disabled children are abused at the hands of their ‘special parents’ every single day.

“Autism Parents” are no more empowered to be exceptional parents than any other parent on the planet.

Are there some parents of Autistic kids who are absolutely amazing and make us all sit there thinking “Man, they have this shit nailed?”

Yes.

Just as there are some parents of “typical” kids who are absolutely amazing and make us do the same.

Don’t get me wrong- parenting an Autistic child can be a vastly different experience from parenting a neurotypical one (or so has been my experience from parenting my two diverse kids). Yes, there are different challenges and different struggles. I’m not going to deny that for a second.

But how we deal with that is an entirely personal decision.

There is no “Autism Parent Gene” that gets activated and turns you into a super hero the second your Neurologist hands you a piece of paper to sign.

And no, raising an Autistic child does not necessarily make you a better parent or a better person.  No more or less than raising a typically developing child would.

Parenting is an experience that absolutely transforms you from the inside out, sometimes for the better and sometimes for the worse. Which side of that fence you fall on is- quite frankly- entirely up to you.

So call me a cynic, but when I see crap like this:

All I can think of are articles like this. And this. And this. And this.

And the hundreds, upon hundreds, upon hundreds of different stories we have of “Autism Parents” abusing, neglecting, traumatizing, and even killing their children.

Autism is a neurological difference, not a flowing red cape. It is a part of the identity of the person who is Autistic, not the person who is raising them. 

And having an Autistic kid doesn’t make you a super hero. Nor does it make you a better parent than anybody else.

You aren’t a super hero* for raising your kid, neuro-diverse or otherwise, with love, empathy, support, compassion and respect. 

These are parenting fundamentals, and doing them is the bare minimum of basic human decency.

So, enough with the self-adulation.

edit note: Original text read "You aren't a hero for raising your kid", an unintentional omission brought to my attention by Liam in comments. People can indeed be 'heroes' for being good human beings who share love, respect, support and compassion with their children and with the world. But they are not "super heroes", which implies an ability beyond that of a normal human being, which is the point I was trying to get at in the post. 

Day 3 and already a throwaway post

So, following yesterday's post about my broken tooth, today's post was going to be a deep reflection about the importance of self care.

BUT in doing my self care, I went and got my painful tooth pulled. Finally. After almost two years of on again, off again hell.

And so now I am in serious amounts of pain (freezing doesn't do much for me and even T3s aren't putting much a dent in this one). And I can't really think straight. And I've been sleeping on and off since I got home.

So yeah, I'm going back to bed and hoping that I don't choke on my bloody gauze pad and that the pain has begun to subside by morning.

Goodnight, y'all.

Broken Tooth

I have a broken tooth.

I have had it for six months.  It's a wisdom tooth and I keep meaning to make an appointment to get it dealt with but my life never seems to allow me any time to do so.

Healing from dental surgery is more "free time" than I can afford right now. I don't know how or when  to fit it in, nor can I figure out the logistics of how to do it with Jason's work schedule and my work schedule and kids and all the things that seem so much more important than my damn tooth.

But now,  I think it has an abscess.  And it hurts like hell.

So I suppose I don't have much of a choice anymore.

And once again, my plate is so full that the food keeps sliding off.

There is no baseline for me lately. There are only the fleeting moments where I kick up hard enough to catch one big breath of air before falling under it all again.

So that's my blog for tonight, because my head is throbbing and I can't think about anything else.

Anything except the three hours of cooking and cleaning I still have left to do before Monday hits.

Sigh.  Sometimes it can be hard.

They say self care is one of the most important things parents can do for themselves.

Unfortunately,  they don't tell you how to fit it in.

Edited to add: Got my tooth pulled today in an emergency surgery. It took less than two hours total. And so my entire argument of "no time" was a very powerful lie to myself. I'm glad I can be transparent about that in this space and promise to write a better post about it this month.

Rainbow Coloured Walls

Like most parents of Autistic children, I field a lot of the “What is it like?” question.

It’s a particularly obnoxious one since, up until Charlie was born, I didn’t know any other type of parenting. And, even now, the only thing I really know is what it is like to parent my own children. There isn’t really a universal parenting experience- no more for parents of Autistic children than for parents neurotypical ones.

But, I suppose, there are some things about our lives that do distinguish parenting a child with disabilities from the experience of those that don’t. There are some things that we encounter that most of  my friends will never quite have to worry about, consider, or mitigate.

Consider, for a moment, that you are house shopping and you come upon a Magic Genie realtor. He tells you that he can give you your perfect home. It will be exactly the right lay out, exactly the right size, exactly the right location, and in a completely affordable price point…Perfect in every way and exactly the home you have always dreamt of owning.

Sounds like a pretty good deal, right?

But of course, as is often the case with genies (and with realtors), there’s a catch: Your walls can never be painted. They must always be the colour that they are now.

Now, the rookie shopper will tell you: No problem! I can work with whatever.

And they’d be right.  You can make just about any colour work in most spaces, particularly when you can control things like lighting and decorations.

But a more seasoned shopper knows that the colour of the walls is actually kind of a big deal. Not a deal break- again, this is the perfect house- but a big deal, nonetheless.

On top of that, Magic Genie tells you that you don’t get to know the colour of the walls before moving in. And once you are there, you can never move away.

If you can’t agree to these terms, you must walk away from the home completely.

It’s the perfect home, and you are committed to the long-term picture, so you agree.

And in your mind, you start to ask yourself: What will my walls look like?

You think to yourself: Maybe you’ve lucked out and they will be white! White, while not exactly an exciting colour, does kind of go with every thing. There’s an awful lot you can do with white.

In your mind, you start to decorate your white walls.

And you feel secure in knowing that you can work with what you will be given.

But, life isn’t always that easy.

See, there’s the catch: No one gets white.

Every single magic house has a colour of its own, and white is not among them.

Some houses have very pale blue walls. Others have pale sage walls. Others still are pale taupe.

Some are bolder: a vibrant green, a cool lilac, or a serene gray.

Each of these walls has its own personality, and its own flavour. And, despite your best hopes, they will not match perfectly the white décor you had envisoned in your dreams.

But, for the most part, the colour is flexible. After all, there are a wide variety of different colour schemes that work with a butter yellow wall. While you do need to put in a bit of thought and work with the hue that you have been given, you can walk into most department stores and rest assured that you will find a wealth of different options to accessorize and decorate your space.

And, whatever it is, it is a beautiful colour.

***

Now, imagine that your house has a bright red focus wall.

Like it’s more muted and uniformed counterparts, this red wall is beautiful. But it is also extremely powerful. It is extremely present. It is dominant.

And it doesn’t necessary work with as wide a variety of colour schemes.

You will need to think more intensely about how to decorate your space. You will need to consider the particular decorating needs that accompany a strong focus wall.

 Red requires a different amount of mental work to coordinate. It also requires a different amount of mental processing to become accustomed to. It may not be as easy for every one to adapt to a red wall. For some, it may be really jarring and they may try to find ways to minimize the impact of the wall. However, as we all know, a focus wall is called a focus wall for a reason: it’s the focus. Most efforts to minimize the impact will be in vain, and it is generally best to let the wall dictate the tone of the space.

You will want to pick your décor carefully. It will take time to plan out how to best use the space. You may need to seek out specialized shops to find the perfect picture frames and furniture.

But you will find them. But it takes more time, more energy, more thought, and- often- more investment to get the room exactly the way you want it. But you will get there. 

***

Some of us however,  whether through fate or fortune, walk into our new houses surprised to find them painted in extremely unconventional colours.

Lime Green. Aquamarine. Bright Orange. Fluorescent Pink.

And that’s a whole other ball game.

They don’t make a lot of home decorating catalogues dedicated to teaching you how to work with fluorescent pink walls.

Decorating a fluorescent pink space is a challenge like none you’ve ever undertaken in the history of your decorating life. And, at first, you have no idea what you are going to do.

Some people grieve. How could they have agreed to this? They didn’t know! They were fooled! They were lied to! This is not the deal that they accepted.

(And they would be wrong. This is exactly the deal that they accepted.)

These people will spend the rest of their lives trying to figure out how to get out of their contract and either paint their walls or move away.

Others will dedicate themselves to finding ways to work around the pink walls that they find so offensive. They will hang curtains to cover them. They will use blue lighting to try to conceal the colour. But, at the end of the day, the walls are still fluorescent pink, regardless of what they do.

(These people will often wind up frustrated and will never gain a true appreciation for their home or comfort their space.)

Others still will embrace the intensity of the wall colour. They will learn to love fluorescent pink and will spend the rest of their lives working towards trying to perfect that space and find all the accountrements that will enhance the wall’s natural beauty. They become artists, and learn that the pink walls are an opportunity to turn their lives into living canvases.

Is it more expensive? Yes.

Is it more time consuming to decorate? Yes.

Can it be frustrating sometimes, particularly in the beginning when you don’t have an understanding of how to work with the colour? Yes.

Can the intensity of the colour be difficult to manage sometimes and require more energy from you? Definitely, yes.

But…there is a richness and uniqueness and power that emanates from a pink wall.

And the intensity is exactly what makes it so beautiful.

Your home, while unconventional, becomes a life long labour of love, teaching you to open up your eyes to all the colours of the rainbow.

***

Longwinded as it may be, this is the best analogy I can think of to describe the experience of parenting my children.

When I was pregnant, I naively thought that my child would be like a blank white canvas that I could do with as I pleased.

Of course, no child is a blank canvas. They are all bright and colourful personalities of their own, and while you can impact them, you can not change who they are.

Some of their colours are more typical of what we would expect in children. They fit into the moulds we have create more easily and blend successfully with the world around them.

My daughter, Charlie, is not one of those children. Like a bright vividly-coloured focus wall, she is an insatiable force of life that dominates almost every space she enters. Her incredible thirst for knowledge and for interaction is unlike any toddler I have ever met, and she is already one of the strongest people I know.

To parent Charlie is to embrace the richness and boldness of her personality and to build up a world around her that plays to her strengths. It requires a lot of thought and planning, and ultimately, she and I are discovering that her atypicality may not always fit the mould. She is unlike her peers, but she is unlike them in a way that is generally easily accepted- and even admired- by the world. She ‘breaks’ the social mould, but in ways that are deemed socially acceptable.

To parent Sam is to walk into a proudly fluorescent pink house. There is nothing conventional about him, and his beauty isn’t always understood by others. He doesn’t break the moulds- he is apart from them, functioning independently from almost all social expectations.

The difference in time, effort, cost and intensity of parenting Sam in a way that is respectful of his pronounced differences can not be denied. It is not always easy to build up a world around him that compliments and enhances who he is.

And, as amazing as he is, I am always aware that he will never be considered to ‘fit’ the definition of what we consider a typical person to be.

There are people who spend their lives telling me that I must learn to do everything in my power change him, to cover up his differences and try my best to change his colour into one that is deemed more palatable.

But the thing is that I love his colour. I never expected to have an Autistic child, but I have fallen in love with the complexity, the vividness, the unabashed uniqueness of him.

And, like Charlie, while he doesn’t necessarily fit the mould, I am learning to live in a house that is multi-coloured and multi-faceted. I am learning to take the time to really think of who they are, as individuals, in every decision that I make. I am learning that, while the journey is different for both of them, it is phenomenal one well worth the undertaking.

I love my brightly coloured walls. I love that they are outside of the norm. I love that they have made me rethink everything I thought I knew about the world.

I love living inside a rainbow. That is what parenting my children is like. 

They are more glorious than anything I could ever have imagined on a blank canvas.

And that’s what it’s like to parent my atypical children.  

It’s colourful.