When I first read Peter Gray’s Free to Learn a couple years ago, I was struck by his descriptions of young children playing together. In the interactions he transcribed, these children were negotiating social hierarchies, defining relationships, experimenting with emotional expression and response, making small talk, and learning to understand the thoughts and feelings of other individuals – all through the context of undirected, independent, imaginative play with each other.
At the time I was both impressed and discouraged: impressed at the ability of the human mind to use pretend play as a means of acquiring important social skills, and discouraged at the thought that I hadn’t yet seen my son engage in pretend play with another child in that way. He could parallel play with his baby brother, and that was about it; other children overwhelmed and even frightened him.
But lately I have watched him playing with Limerick, roaring and yelling and screaming at each other, and when I cautiously peek around the corner they quickly assure me that it’s all part of the game, and their characters are angry, not actually them. Their pretend animals ask each other if they can come in, or share space, or help with something difficult. The boys ask each other, outside of the game, about what they are each comfortable with and what the other one’s preference would be for the kind of game they play, back and forth until they reach a compromise.
I have watched him playing with Aubade, laughing and wrestling and generally being silly, until suddenly she pretends to be sad with a pouty frown and a slump of her shoulders, proclaiming that she is sad, and he instantly changes his mood to match her emotional expression, curling up next to her to give her snuggles until she decides she is happy again.
While his understanding of other people’s emotions may not be as intuitive, and while social norms and niceties may always be more of a second language, he still has the innate desire to connect and belong with others. And so with the people he loves, he works hard to understand them, to compromise with them, to adapt to their wants and feelings. We’ve done a lot of “play coaching” with him and his siblings over the years, to get to this point, but now, every time I see him bend and adjust, every time I hear him ask what his siblings would rather do instead of demanding things go his way, I am so encouraged by how much he has learned, and by how much he can do without any adult around reminding him. Those hours of play have really been effective in helping him pick up and hone his budding social skills – and I have no doubt they will continue to be.
Whenever my husband and I talk with people about autism, or describe some of the behaviors and traits that are related to it, someone will inevitably identify with one or more of those behaviors and joke about how they must be on the spectrum too. As another logical conclusion would be that autism is an exaggerated or imagined condition, I am glad that no one I know has used their identification with an autistic trait as an opportunity to disbelieve the existence of autism! However, the situation is common enough that I’ve been searching for a good way to illustrate the difference between having one or more common autistic behaviors and actually being autistic.
An infographic from Little Black Duck (an Australian company specializing in autism communication services) uses the analogy of pregnancy: someone might have some of the symptoms that are commonly associated with pregnancy, like sore feet or nausea or weight gain, without actually being pregnant – there is a different underlying cause behind the similar or even identical presentations.
I think this is a helpful analogy for the most part, except for the fact that autism as a condition is defined by the presence and degree of certain types of behaviors. Pregnancy is very clearly distinguished from non-pregnancy by the presence of a fetus; there is no such clear-cut biological test to distinguish the autistic mind from the allistic mind. Those very human behaviors that present in both autistic and allistic individuals are the only metric used in making the diagnosis, and the line is drawn at a somewhat subjective conjunction of multiple co-occuring traits and the severity thereof.
To me, the clinical struggle of defining the autism spectrum seems similar to the zoological struggle of defining a taxonomical species. Perhaps a duck could be defined as a warm-blooded, egg-laying animal with wings, feathers, webbed feet, and a broad bill. A seagull could relate to many of these duck traits, but not having all of them would fall short of the official criteria. A bat or a snake or a duck-billed platypus could relate on a more distant level, while a moose or bear would struggle to understand the duck at all save from an external perspective.
Likewise, some people will relate to the social anxiety many autistic people struggle with; some people will identify with sensory sensitivities; others will connect with the difficulties of small talk and nonverbal communication. People with other neurodifferences, like ADHD or FAS, will probably have more behaviors in common with autistic people than the general allistic population will, but like the seagull will fall short of the official criteria for the diagnosis. On the flip side, some people will lack almost all of the autistic traits and behaviors, and struggle more to bridge the differences between them and their autistic family and colleagues. But just like ducks are still animals, and all of their characteristic traits are shared (individually or in sets) by some species or another in the animal kingdom, so too autistic people are still human, and all of their characteristic traits can be found scattered throughout the general human population. It is only when all those traits converge that a duck is defined, or autism is diagnosed.
Now I just have to wait for a conversational opportunity to use my new analogy 🙂 What do you all think? Does it make sense? How do you try to explain the difference between autism as a neurotype and commonly seen autistic behaviors?
Rondel is not exactly a stereotypical picky eater, but he is quite particular when it comes to food, for clear sensory-related reasons. Texture and temperature are probably the most important aspect of a food for him – his favorite foods tend to be either frozen or in the dry-to-crunchy range. So he can be quite happy eating some tortilla chips (sometimes he’ll tolerate them with melted cheese) alongside a bowl of frozen mixed veggies, he loves toast and frozen blueberries for breakfast, he prefers crackers to fig bars, he only enjoys chicken nuggets if the outer coating isn’t at all “mushy”, and he won’t eat any fresh fruit at all (except perhaps melon in the summer or pear in the fall) after having decided his primary previously acceptable fruit (apple) made his mouth feel funny. He will eat noodles and potatoes in moderation, but not consistently. Mexican refried beans and rice are acceptable, but runnier beans and rice dishes (I have a few really good ones) are not. I don’t think he has ever consented to eat soup or oatmeal, and the thought of sweet potato or avocado is enough to make him emotionally upset. Also, having a favorite food to accompany a merely tolerable one seems to help by resetting or calming the tactile receptors in his mouth.
I had never really given much thought to picky eating prior to having kids, because I tend to be a more adventurous eater, but I am realizing now that I have my own sensory quirks. I heavily prefer foods where each bite will have a variety of textures, or where the level of spiciness is enough to leave a burn, or where dedicated chewing may be required – so in a peanut butter sandwich I will use crunchy peanut butter and orange marmalade and toast the bread if at all possible; I attempt to make even normal bland foods more bold by adding extra seasonings (cayenne in the mac and cheese, double the recipe’s amount of every single spice for spice cookies); and I enjoy fairly tough meat but can only rarely handle creamy soup.
The appearance or smell of a food can also cause an overwhelming or challenging sensory reaction. Rondel reacts quite strongly to anything that looks mushy or gooey (like yogurt or banana); I recoil from unevenly bumpy foods (I avoided looking at peeled bananas for at least a year as a child). Rondel can be bothered by the smell of the food other people are eating or even by food that he enjoys eating (which I have only observed in myself during pregnancy – I notice smells quite well but am not usually bothered by them), but we’ve found that lighting a candle on the table makes things significantly better for him.
Interestingly enough, I have also recently noticed that eating painfully spicy food actually helps lower my anxiety levels, and temporarily decreases my reliance on other stims. I’m guessing it is similar for Rondel, and may be part of why he’s been a bit pickier and more wild lately as we are out of both tortilla chips and frozen blueberries. It makes me wish some of his earlier oral stims were still helpful for him – he had been able to translate overt licking of his hands and arms into chewing a wooden necklace, and it made a big difference for him in more stimulating environments especially – but he hasn’t shown much interest in them since this summer. I was beginning to think he would take after my grandmother, who still surreptitiously chews on her hands to stim! And who knows, maybe he will 🙂 in my experience, stims can ebb and flow over time, even if some are more enduring or central.
In the meantime, we’ll keep on freezing our yogurt into creamy cold dots, stocking our house with plenty of whole-grain bread for toast, lighting our candle at dinner, and continuing to try new foods in hope that some of them will cooperate with his unique blend of sensory cravings and aversions!
One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.
To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.
I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.
It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.
I shook my hands back and forth like there was a vibrato in my wrists; I made waves through the air like the swirling lines of a dancing ribbon; I watched my fingers sparkle against the sky.
We were at the park; a storm was rolling in and the air was cool and crisp, with a bite to the wind. I was pushing Aubade and Limerick on the swings, feeling like I could fly with them, happy in the weather and the hours we’d been at the park already and the laughter bubbling from them as they swung. I would run towards them as they flew backwards, then dart backwards out of the way just before they could swing forwards and crash into me, and they would laugh so hard they could hardly catch a breath. Aubade would crow, “Three!” and I would push her three times, each one bigger than the last, so the third push would make her erupt with glee. And as the happiness ran through me it ran to my hands, and I chose to let it be instead of shutting it down, and I found as my hands danced in response to my happiness they also made it grow, until I was as completely blissful as I have ever been as far back as I can remember.
Normally, I have my body on some sort of lockdown – I can feel an impulse to move and then before I even have time to process it there is a counter signal to hold still. Normally, the only things that get through this lockdown are the stims that I need to cope with my anxiety or the stims that occur when I’m thinking hard enough about something else that I don’t notice what my body is doing. In other words, I let my body process and express my negative or neutral emotional states (at least to some extent, because I have learned that it is important for my mental health), but I prevent it from feeling my joy.
I’m starting to think, now, that the stimming of my happiness may also be important for my mental health. I have walked the thought paths of depression for so many years, always feeling inadequate, always feeling like I was carrying a nameless secret that would make people reject me if they found out, always shutting down my happiness from reaching my body so that even the moments of the most joy and beauty were tinged with sorrow. But here my body is ready and waiting to give to me the gift of happiness – of taking my happiness and escalating it, elevating it, prolonging it – able to protect me from the darkness of those roads, if only I am willing to let it do so.
I stimmed today, for the pure joy of it. I hope I can feel free and confident enough to do it again.
It is hard to be a child. It is hard to be a parent.
It is harder still to be a child with a disability – to be noticeably different from the world while still having to find a way to live in it, to be growing and developing on a different timeline and watching younger friends and siblings attaining higher skills, to be unable to participate in “normal” activities and events. And it can be harder to be the parent of a different child as well: there is the pain of seeing your child left behind, isolated, excluded; there is the sorrow of knowing certain paths are closed for them; there is the hurt of watching them hurt, physically or mentally, because of their condition.
Anyone who denies that parenthood can be difficult is delusional, but in the autism world there is a subset of parents who twist their children’s difference into a curse, who portray themselves as martyrs and who thus by implication make themselves out to be the victims of their children’s autism (and, since autism is an integral part of a person, victims of their children). I haven’t had much contact with these parents, and I am not sure how large of a group they are though I have read about them often on neurodiversity advocacy websites, so I didn’t have the inoculation of experience to protect me when I opened up Pinterest and saw this image at the top of my home page:
This parent is clearly feeling resentful of their child. They see their son struggling, and instead of responding with compassion they just resent the burden that those struggles impose upon them as the parent. (So while they “see” their son’s struggles it doesn’t seem like they are knowing and understanding their son in his struggles.)
Well guess what?
Your son didn’t ask to have a parent who doesn’t want to hear his tears with love, or to help make his environment safer and more accepting so that he’s not continually triggered to tears and screams, or to view him with compassion and understanding.
Your son didn’t ask to be born autistic in a world that values normalcy and conformity, especially in children, who are expected to walk in obedient lockstep through the typical developmental stages and the standard grades of school.
And I can guarantee you that your son doesn’t want to scream and yell at you all day long. Every child – yes, even autistic children – want to have a relationship of peace and love with the people that they are most closely tied to. His behavior is how he is communicating to you that something in his life is horribly, terribly, wrong. He could be non-verbal and in physical pain he doesn’t know how to communicate or address (like my friend’s son often is). He could be overwhelmed by an uncomfortable sound or smell or feeling, and be unable to handle that sensory input on its own or in conjunction with some other social trigger (like my son often is). He could be in ABA training for hours each day and have no other way to tell you that it is sucking the life out of him to be forced into a neurotypical box where he knows he will always fail and always be judged.
Maybe you, as the adult in this relationship, need to address the anger issues you have with your son’s autism before blaming him for the way you are reacting to his attempts to communicate with you. I understand that things can be hard, but it is never appropriate to shame your child for his struggles on the most public forum possible (the Internet), and it is incredibly immature to add to that by insinuating that your struggles are all due to his inability to be a normal child, that you are some sort of martyr for putting up with him. Get the support you need, and check your attitude, in a private community where your child’s dignity can be protected and respected.
I love this second image so much because it acknowledges that both parents and children will struggle without victimizing either of them, without an attitude of resentment towards either of them, and with respect and tenderness towards both of them. (And it puts it so gently too!)
Like I said above, the hard and difficult behavior of a child, especially a child on the spectrum, and even more especially a non-verbal child, is a method of communication. Their needs and wants and struggles will show up in the way they act, and while their behaviors may be particularly challenging for a parent to deal with, they are a symptom of something deeper that is wrong.
And if you are that parent, faced with those challenging behaviors, feeling at the end of your rope, unsupported in your own struggles, please find help, and please do not blame your child or their autism for your struggles. Honestly, blaming anything only leads to more resentment. Try to see those behaviors as a clue to finding the best way to support and help your child. Try to see your child as fully human and fully deserving of respect and dignity despite their struggles and the struggles you have as their parent. And try to remember that no matter how hard your day is – as a neurotypical adult in a world set up for the way you operate – that your child’s day – as a neurodivergent child in a world foreign and alien to the way they operate – was almost certainly harder.
For this week’s quick takes linkup Kelly wrote about why she and a few other bloggers write about their families and how disability affects them, with some solid insight about the good to be gained from writing and the pitfalls to avoid. I do recommend reading it, especially if you write or are considering writing about your own family! (Key takeaways? Show how the happiness of everyday life is not less because of disability, and don’t overshare about your children’s private issues.) From my perspective, here are several of the reasons that I write as much as I do about my own neurodivergence and Rondel’s autism on this blog (in no particular order).
Writing helps me process life. Since I learned how to write I have consistently found it far easier to coherently express my thoughts in a written format than vocally. My mom and I actually had a journal for writing back and forth to each other when I was around 10 or 11 that we used and that I appreciated a lot! Similarly, my husband and I used Facebook Messenger for most of our serious pre-marital conversations, because the anxiety involved was so much less and the processing time could be longer. Now, I use the blog to help me focus on things I want to remember, organize events as they happen (since I can never remember anything chronological reliably), and fully formulate my thoughts on issues that are important to me.
My son is a human person of innate worth due all the respect that any other person should receive. (Well of course, you should say). But from a lot of the autism rhetoric on the internet, a person could easily come to the conclusion that this is a radical or even untrue statement – and for that reason alone I believe it is essential to write about him and our family in a way that demonstrates his humanity. Some of his actions may not look like what society expects; his developmental timeline may be different than “normal”; and he may struggle with things that most people consider to be trivial inconveniences or perhaps don’t even notice. But those developmental differences do not make him less worthy or less human.
Autistic children grow up to be autistic adults, and they still struggle with things that most people don’t struggle with. So that’s why I write about myself: first so that people can understand why I or other neurodivergent adults may act in certain ways, second so that neurotypical adults don’t trivialize our struggles because they only perceive the slight quirks and oddities that show through our masking, and finally so that younger neurodivergent individuals can see adults like them living and struggling and coping and thriving in the world. We might not be the best at forming in-person communities (and it would be hard anywhere except in a large city anyways), but even just knowing other people like me through the Internet has been hugely encouraging and enlightening; I’d love to be able to extend that gift to someone else.
As a corollary to this, it has been especially difficult for me to find a community of Christian autistic/neurodivergent adults, particularly women. There is one in my small group which is amazing – I don’t recall having had that kind of connection in an adult friendship before – but other than that there are just a couple blogs that’s I’ve found. I would love to both share how I live my faith as a neurodivergent individual and help the church deepen its understanding of neurodivergent individuals, and maybe I can start small here.
Sometimes I find things that I want to share, and the blog is an easier way for me to share them than on Facebook, where it is so easy to hurt feelings. See this link for an example: Ink and Daggers: Small Talk (trigger warnings for ableism, child abuse, and language).
I can’t think fast enough in conversation to discuss things that are close to my heart. I struggle to read my companion’s reactions, to gauge where next to move the discussion, to know how to change the subject without giving them my agreement, to be passionate without getting emotional and losing the words I need most. I wish I could tell everyone about neurodivergence, to promote acceptance instead of toxic awareness, to advocate for myself and Rondel and other people who are hurt daily by the ableist assumption that they are less because they are not normal, to help people to understand instead of pathologize autistic behavior. But I just cannot manage all the little things required by conversation while a high-stakes, emotionally-charged issue is the topic; it never ends well. Instead I write, and maybe my words will reach eyes that need to read them instead of ears that need to hear them.
Finally, this story is all-too-common among people whose differences were seen purely as deficits, whose superficial abnormalities were trained out of them but who were never given coping skills for their deeper struggles, who were only ever valued for appearing normal and never praised for their unique abilities. This is not my story, because I was blessed with parents who always sought to understand and support, but it is a story I have read time and time again in the online adult autistic community. I write to try to create, with my words, a world in which this is not the norm for autistic children. (Is it the norm, you ask? Surely it can’t be that bad? Well, it is the result of therapeutic practices condoned by major groups such as Autism Speaks and the Judge Rotenberg Center, so it is definitely mainstream. I am hoping it is becoming less common, of course.) I write also to share those more painful and disturbing stories – and the principles gleaned from them – so that fewer people can say, “oh, I didn’t know!” as an excuse for their inaction and indifference.