Posted in information, musings

quack quack: my autistic duck analogy

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.

everyonesautistic-500x708

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?

Posted in musings

because it is good to belong somewhere

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.

Posted in musings

struggling with autumn

Autumn used to be my favorite season. It was the slow build towards Christmas – Halloween, my birthday, Thanksgiving, and the final crescendo of Advent, gradually growing excitement and joy with each passing day. It was the flash of defiant color flaming bright against the shortening days and cooling nights. It was the sharp relief of heat breaking like a sudden smile on a stern face. It was the beginning of a new school year with new classes and things to learn and a definite schedule after the chaotic fun of summer. It was apples ripening and pumpkins to be carved and pot pies pulled steaming from the oven. It was russet and gold and amber and deep brown turning all the world the warm rich colors of wooden bookshelves and leather-bound books – nature and library in one.

And I started out this autumn so well, taking the kids up north to try to see the changing leaves, going to local fall festivals, painting with the warm colors of fall, carving pumpkins – and then it all fell apart, in the fading glow of Halloween, as the realities of four birthdays and Thanksgiving and Advent and Christmas coming all hit me. If autumn has always been for me the season of growing anticipation of coming joy, than this year it feels like the season of growing anxiety about coming struggles. I hate that the same beautiful things I once loved, that have always been so special to me, are now mocking me for my inability to fully enjoy and live in them like I used to. I want to make beautiful traditions for my family, to give them the love of all the seasons of the year that I have always had (for all things are beautiful in their own way, or have the potential to be redeemed into beauty), and all I can feel is shame at my inability to do so – or to even see that beauty myself, anymore.

I just can’t wait for it to be over, this year. For the dead and barren branches of winter to take over. For the lights and colors and gifts and effluence of friends and family to be gone, and in the cold January air to be able to take up the tasks of everyday life again without the expectations of the holidays weighing on my shoulders. Beauty is too high a standard to live by, when I’m the one who has to create it in my home. Like a flame-tinged leaf myself, I’m swaying in the strain of the autumn wind and soon I must break and fall – only I can’t let myself and I have to hold on until the wind passes and the still of the winter brings peace.

Posted in musings

turning thirty

I suppose turning 30 is as good a time as any for contemplating my twenties and looking ahead to my thirties, since we use a base ten system. Ten years is such a long time, when I sit down and think about it – I mean, ten years ago I was single and in college, and ten years from now I will have two teenagers…

It is interesting how time passes, how so many things change about life and circumstances, and how yet, inside, I still feel like the same person I always have been. I suppose I have grown and matured since childhood; but I still feel like the preteen who couldn’t put feelings into spoken words even when she was bursting with them, like the teenager who was haunted by feelings of inadequacy and failure, like the college student who knew how to excel academically but could never maintain social connections, like the young adult who tried to bury her insecurities by attempting to be perfect at absolutely everything. I suppose that is part of being a complete person: carrying a self that at its core remains one thing, one entity, despite the processes of maturation and the effect of time.

And what have time and maturation done for me, these last ten years?

Superficially, I graduated college; got my first non-student job (which I’m still at 8.5 years later!); lived with roommates for a year; recovered from a break-up; lost a treasured mentor; dated and got married to my husband; bought two homes (we moved); and had three kids.

Not so superficially, I struggled a lot over the last ten years with my inner companions of depression and anxiety. The first year of our marriage was especially hard because it felt too good to be true, I suppose, but in the long run our marriage has ended up being one of the most helpful things for that struggle since I have a partner I can trust to unconditionally love and support me through hard times. Also in this decade I sought out professional help for the first time and found it incredibly helpful. I’m realizing that depression and anxiety are fairly loyal and steadfast traveling companions, so I know I’m in for a more struggles still to come, but I’m also realizing that having them around doesn’t make me any less valuable or worthwhile as a person.

Along with mental health and marriage, parenting and neurodivergence have been the two big players in my life over the last decade, particularly the last five years. I have been learning that difference is not necessarily negative, in either myself or in others, that perfection is not the goal (and is ultimately a subjective goal anyway). I have been (and probably always will be) learning to be patient 😛 I am learning how to draw boundaries for myself – even with my children – and how to teach my children to draw boundaries for themselves. I am learning that a bad day or a difficult season does not make me a failure as a parent. And I am learning not to compare myself or my family to other parents and families, because the differences of personality, neurotype, and circumstance are so vast and varied.

Most days, honestly, I feel like an imposter at this whole adult-ing thing. Inside I’m just a teenager, nervous and insecure, with the added pressure of having more years of mistakes to look back on 😛 According to my husband this is fairly common, though, which is somewhat consoling 🙂 My hope is just that, however many years are still to come, I will keep growing in wisdom and holiness, and that I can be a blessing to the people around me instead of running away from them.

Posted in musings

stimming for joy

I stimmed today, for the pure joy of it.

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.

Posted in family life, musings

parental ableism

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:

badparent
White words on a gray background: “I have a child with Autism. Everybody sees his struggles, but nobody sees mine. It’s hard to be screamed, yell at, every single day. It’s exhausting listening to him cry every single day.”

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.

goodparent
White words on an orange background: “AUTISM. When I have a hard day I know he’s had it harder.”

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.

Posted in musings

reading harry potter… again…

I reread the Harry Potter series these past few weeks and was reminded of how much I enjoy the books, how much I hate Umbridge, how conflicted my feelings are about Snape, James Potter, and Sirius, and how heart-wrenchingly sad the final battle of Hogwarts is. I really love how the series portrays even its heroes as flawed human beings – people with unique personalities, strengths, weaknesses, virtues, and vices; it counteracts the black-and-white thinking that I can be prone to. Also, I think my current favorite character is Luna Lovegood (it’s either her or Neville, the clumsy and insecure boy who blossoms into a leader of the revolt against Voldemort’s henchmen at Hogwarts).

Dolores Umbridge is arguably not the most evil character in the books. There is obviously Voldemort, who has no qualms about murder, injustice, and oppression. There are the Death Eaters, who agree with Voldemort’s positions on privilege and power, and who sacrifice the innocent to their cowardice (I’m thinking specifically of the Carrow’s here). There is even Barty Crouch, who sent Sirius to Azkaban without a trial, who upheld “justice” publicly by condemning his own son but undermined it privately by sneaking his son out of Azkaban and attempting to control him. But I hate Umbridge so much that I struggle reading Harry Potter and the Order of the Phoenix, where she plays so prominent a role. I think it is the trappings of innocence and self-righteousness hung over the inner cruelty and self-serving ambition that infuriate me most about her – that, and the complete disregard she has for truth. Everything she does is a power play, a move towards a desired end, and it doesn’t matter at all to her what the facts actually are.

Luna, on the other hand, is disarmingly, unexpectedly, even awkwardly honest. She makes comments about the way she is picked on and her lack of friends as statements of fact, not seeking pity or assistance. She believes some strange things – but she believes them trusting the father who she loves, who has been her only family since her mother died when she was nine, and I admire the love and loyalty she shows him even when the other students are mocking him. From her outward appearance and behavior to the core of her personality, she is who she is and is not ashamed or self-conscious about it. And of course she is brave – she is the only non-Gryffindor student who joins Harry in his quest to rescue Sirius – and intelligent, with a love of learning and intellectual discovery (she is a Ravenclaw, after all 🙂 ).

I could go on and on about the characters; they each make me think so much about my own life and life in general, about the power of evil ideas and fear, about the strength needed to stay true to the right and the good, about the complexity of human beings and the relationships between them. But for now I’ll just ask – if you could pick one least favorite and one favorite character from the series, who would they be and why?