Posted in autism acceptance month, information, links

autism acceptance month

Each April is Autism Acceptance Month.

Not, as some groups would put it, Autism Awareness Month. It’s a different perspective, because it’s coming from a different place. The autism awareness campaigns – like the Light It Up Blue campaign from the notorious organization Autism Speaks – tend to originate from medical professionals and non-autistic parents, people who see autism primarily as a disorder that merits pity and needs to be cured. The autism acceptance campaign, on the other hand, originates with autistic self-advocates (specifically the Autistic Self-Advocacy Network): people who understand autism to be a difference rather than a disorder – a difference that gives to us even as it makes certain things more challenging, and a difference that shapes our identities. To those who advocate for acceptance, considering autism to be a disorder and trying to eliminate it feels like a personal offense.

We are here, say the autistic self-advocates, we are autistic, and we have the same rights and humanity as everyone else. Stop trying to make the way we think and feel and act mirror yours; our autistic personhood is just as valid as your neurotypical personhood.

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autism acceptance word cloud from the autism acceptance month website

This year, for the month of April, I have two major goals. First, I am going to spend the month writing about autism from the perspective of neurodiversity and acceptance, both as a (probable/self-diagnosed) autistic adult and as the parent of an autistic child. Second, I am going to pursue an official medical diagnosis for myself (although all the evaluations are in April, I won’t have the final word until May, unfortunately). I hope that you will join me on this journey – that together we can learn more about neurodivergence and how it affects individuals and society, and find ways to accept and love the differences in ourselves and those around us.

I highly, highly recommend that anyone wanting to learn more about autism focus on information from autistic people. Otherwise, it’s as if you’re trying to learn about the African-American cultural experience from a bunch of white authors, or trying to figure out what it feels like to be queer from the observations of the straight/cis community. Non-autistic professionals can give you an understanding of the history of the diagnosis, or the medical definition of the diagnosis, but they cannot tell you what it is like to live as an autistic person. They simply don’t have that inside understanding.

To get you started, here are some of my favorite #actuallyautistic internet presences (some of them are more than just blogs!), in no particular order:

  • Autistic Not Weird, by Chris Bonnello
    • I’ve been following ANW for a long time now, since back when it was simply a blog. Chris Bonnello has a great sense of humor, a lot of stories to share, and an accessible way of explaining technical information. This was one of the first blogs I read that was written by an autistic adult, and finding that I could identify with almost everything he wrote pushed me forward in my own path of self-discovery. The ANW community on Facebook is one of the most inclusive I’ve run across, with autistic individuals and their families asking and answering practical questions honestly and kindly.
  • Suburban Autistics, by Ally Grace
    • I found this blog by searching for gentle parenting tips, actually! Ally Grace and several of her children are autistic, and she writes about parenting in a gentle, accepting, positive way. I am always both inspired and challenged to be a kinder, more compassionate person and parent when I read her work – and to give myself a touch more grace in my own struggles as well. If you are on Facebook, I believe she is a bit more active there than on the blog.
  • Neurocosmopolitanism, by Nick Walker
    • I don’t think this blog is active anymore, but it is foundational in my understanding of neurodivergence. I would quote liberally from his articles except that once I start, it’s hard to stop! So just go and read them in full. Start with Throw Away the Master’s Tools if you really want to understand the mindset behind acceptance as opposed to awareness.
  • The Girl with the Curly Hair, by Alis Rowe
    • This is significantly more than a blog; it is a compendium of resources, especially for autistic women. Honestly, my main interaction with this site has been mediated through Pinterest, where I’ve found so many quotes –  accompanied by the curly-haired girl illustration herself that – resonate with me on a deep level. (In the following quote, keep in mind that in the US the diagnosis of Asperger’s Syndrome has been deprecated and replaced by an autism diagnosis.)
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Quote: ‘Women with Asperger’s Syndrome may be both brilliantly strange and strangely brilliant! We are genuine, truthful, thoughtful and interesting… with unusual problem-solving skills and out of the box thinking styles. We tend to have volatile emotions, quirks, interesting mannerisms and we tend to feel most comfortable and relaxed when we are on our own.’

So for World Autism Awareness Day today, let’s start looking at autism from the perspective of difference rather than disorder, and seek to understand it from the inside out! My challenge for you is to pick one of the websites I shared above and read at least one article from it 🙂 I’d love to hear what you read and anything from it that stood out to you!


all posts in the april autism series will link here after they’re published!

Posted in book lists, information, links

differently wired: an introduction

I don’t remember when I first discovered Debbie Reber’s podcast, TILT Parenting, but I do know that I immediately went back and binge-listened to the entire archive, and have assiduously awaited each new episode since. It is a mix of practical advice and principled encouragement, of understanding acceptance and useful support; it encourages parents through their struggles while maintaining the worth, dignity, and humanity of their neurodivergent children. Almost all of the episodes are interviews – some with experts in the field, like Steve Silberman (author of Neurotribes) and Dr. Ross Greene (author of The Explosive Child and found of the non-profit organization Lives in the Balance); others with life coaches and parents of neurodivergent children, sharing their stories and offering real-life suggestions; still others are with Reber’s son Asher, giving the perspective of a neurodivergent child a huge platform and helping parents understand where their children might be coming from.

So when she announced that she was writing a book, I was incredibly excited! When she asked listeners to consider joining her advance book team, I signed up as soon as possible – so I’ve gotten to answer polls about book publicity options, mostly, and should be helping publicize the book’s publication when it launches in mid-June. But unexpectedly, and wonderfully, Reber convinced her publisher to let all hundred-odd people on the team have access to an advance e-copy of the book. I was walking on clouds when I got that news…

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And now that I’ve read Differently Wired: Raising an Exceptional Child in a Conventional World, I want to share it with you, because it exceeded all my expectations.

Reber is a skilled author, adept at blending storytelling, science, principles, and pragmatics into a unified whole. In the first part of the book, she explains the problem: the failure of a system that is “good enough” for neurotypical individuals to accommodate the increase in neurodivergent individuals, trying to force them to change instead of offering supports that would allow them to flourish as they are. In the second part, she outlines eighteen “Tilts” – shifts in perspective that enable change – along with action items for putting each one into practice in some small way right away.

My plan is to share some of my favorite quotes and themes from the book with you over the next two months, and then, when the book launches, to give away one copy here on the blog! Maybe you are feeling frustrated and stuck, wanting to connect with your child more deeply but not sure how; maybe you are feeling hopeless about your child’s future and want to rekindle optimism and find a path forward; maybe you are worn out from fighting for your child’s needs and need encouragement on your journey. Reber’s book can help with all of that – and it is one of the only parenting resources I have come across that (as a neurodivergent individual myself) doesn’t leave me feeling “othered” and uncomfortable.

So keep checking back – I’ll be sharing content from the book, and will open the giveaway as soon as I receive the hard copy sometime in June. If you care for a child who processes, thinks and behaves outside of what people consider to be “normal,” this isn’t a book you’ll want to miss.

Posted in art, family life, links, quotes

lunarbaboon

I have discovered a new favorite webcomic, Lunarbaboon. They seem to exist on the intersection of parenting, mental illness, and nerdiness, so I identify with and heartily enjoy almost all of them. One from January, titled “Enemy”, caught my attention as a particularly apt description of what it is like to be functional despite depression:

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The techniques taught in therapy are designed to help us ignore that inner enemy with more and more success – to make it harder for him to tear us apart each day. That’s why I’m so thankful for them, for the pills that give me the energy and positivity to keep fighting, and for the family and faith that give me a reason to fight and a hope for the future.

Posted in family life, links

thoughts on connection from the Read Aloud Revival podcast

One of my current favorite parenting/homeschooling podcasts is the Read Aloud Revival podcast; the host is an upbeat, faith-filled mom who manages to be idealistic and practical at the same time, and who together with the rest of the podcast team puts together a deep line-up of interviewees for each season of the podcast (they’re on season 9 now, so they have some experience!). Topics range from reading with toddlers, to exploring the world of fantasy literature, to developing high school curricula, and more.

This most recent episode, #50, was ostensibly about building upon picture books with simple and natural projects for young children, but what stood out the most to me was the emphasis on connection with your children, and using the books and the projects as a means to that end. The guest, Jennifer Pepito, said among other things that

I feel like connecting with our kids is probably the best antidote to any of the social ills that people struggle with… when kids aren’t well-attached to their parents, they’re not interested in carrying on the values of their families. Projects serve as a starting point for that attachment.

We get so busy with the planning and the researching that a lot of the time that we could be connecting with our kids is lost. Your kids are really better off having you look them in the face and chat with them about what they’re doing… they’re better off having you than all the fancy ideas.

I am definitely guilty of being an obsessive researcher and planner; I get lost in the world of my ideas, too wrapped up thinking about what I could do with the boys that I lose the time I have with them in the present. So it was a really good reminder to me to hear this veteran homeschooling mom say that no matter how good a project is, if it requires you to spend a whole day researching, planning, and preparing, it’s made you lose a whole day of connecting, a whole day of spending time with your children, a whole day of showing them just how valuable and precious they are to you – and that’s just not worth it.

In the end, what I took away from this episode was that it’s better to just read good books together, and play the simple pretend games or do the basic activities that naturally spring from the stories, than to make everything as perfect and wonderful as possible, because nothing can replace the love and connection you have with your children. And that is something I can totally get behind 🙂

Posted in links

a better post than I could write for Mother’s Day

In lieu of my own thoughts, which are not particularly profound, wise, or experienced, I want to share this post from Laura at Mothering Spirit.

None of us is all of these things. But we are all here together. And together, we are what can make motherhood so complex – and sometimes challenging to celebrate.

We are the thousand colors of one stained glass window. Love’s light passes through each one of us, and we are changed. Because we know ourselves to be mother.

[…] whenever we let our hearts be stretched to invite each other in, we all love better, bolder, and braver. Because we remember the mothers we have been. We imagine the mothers we might become. We honor the mothers we have loved.

And we love wider. Like the mothers we want to be.

 

Posted in links, musings

fighting the fear of rejection

The deepest fear of the human mind is abandonment.

That statement was dropped ever-so-casually into a talk on Neuroscience and the Soul that I was listening to this week, and it stuck with me.

If our greatest fear is that the people we need won’t be there when we need them most, is it any wonder we try to keep our needs and burdens to ourselves, to avoid that letdown?

If we’re terrified that the people closest to us – the people we long to trust and by whom we need to be loved – will walk away if they knew our deepest selves, it is any wonder that we feel lonely and isolated, unable to truly share ourselves lest we suffer their rejection?

And I think about how our fear of abandonment, instead of being assuaged and lessened by deep trustworthy relationships over our lives, is actually strengthened and confirmed by our experiences.

The baby left to cry himself to sleep learns that he is just too much, too intense, too needy – that no one, not even the people he needs and loves the most, can handle his full range of emotion and personality.

The preschooler sent to her room to tantrum, isolated from her support system when she is most overwhelmed by her own emotions, learns that her anger and disappointment are going to cut her off from the feelings of love and security she craves.

The child bullied at school, dealing with intense rejection from his peer group and unsure of how to fit in and make friends, who then goes home and finds no sympathetic or listening ear, learns – writes deeply into his psyche – his own inadequacy and worthlessness.

We learn, as we grow, that the intensity and depth of our needs, the power of our emotions, and the uniqueness of our personalities contain things that no one else cares enough about to deal with – that the cry of our hearts for unconditional love will go unanswered. So teenagers hide their fears and questions and doubts and struggles from their parents because they’re afraid of being shot down and pushed away again. Spouses keep secrets and avoid topics of conversation because they’re afraid of conflict and disagreement leading to rejection and separation. We isolate ourselves so that we can avoid abandonment – we choose self-inflicted loneliness over the loneliness that whispers in our ears, “no one loves you; no one will ever love; you are not worthy of love.”

I remember in the early years of my marriage sitting in the car reciting psalms to myself before I could bring myself to go into our apartment, because I was so afraid that this beautiful relationship I had would suddenly and inexplicably fall apart – such is the depth and irrationality of this human fear of abandonment.

It takes incredible courage to open our soul to another, to risk this most fierce and desolate pain. We’re so often callous and insensitive to those are daring it, perhaps in ignorance, perhaps in self-protection – for to love another imperfect person unconditionally is also one of the most difficult things we can do. And yet this mutual dance of daring and difficulty, of risk and response, is where we can begin to redeem our broken covenants and communities.

Let us love each other with Christ’s love and allow ourselves to be loved in return; let us strive to know each other with grace and open our hearts to be known intimately in return. There is no great beauty without great labor and at least the risk of great pain.

Posted in family life, links, musings

spending time outdoors, and trying to avoid the built environment in an urban setting

I read a rather depressing article in The Guardian this week about the amount of time kids spend outside – apparently, about 3/4 of kids in the UK spend less than an hour outside on an average day, which is less than the amount of outdoors time the UN recommends for prisoners. I don’t imagine it’s that much better in the US, particularly in urban environments.

There’s been a combination of factors leading up to this, I think. We have the increased attraction of indoor activities, to start – a proliferation of games, toys, and technologies that didn’t exist a few generations ago. We have an increased sense of parental fear and anxiety, which I think stems from the globalization of our news and the breakdown of neighborhood communities. And in general we have a cultural tendency toward comfort and convenience, and being outdoors in all weathers isn’t the most comfortable or convenient thing, especially when parental supervision is required!

But it is undeniable that outdoors, active play and exploration is one of the best possible things a young child can be doing.

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So, in sort of the same spirit as my efforts to make sure my kids eat a variety of healthy foods, I’ve decided to be very intentional about getting them out of the house every day for an hour or two at a time (Limerick doesn’t usually last longer than that without needing some sort of rest or snack). I wish I had more wild and natural places for them to play easily, but at least I can get them outdoors with their hands in the dirt and rocks and grass!

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And in the mud! Irrigation at the botanical garden makes for a great play place for a toddler.

Our city does offer a variety of parks, and we live in a walkable area, so that helps a lot. Just this weekend, actually, we discovered a new park that has a small desert botanical garden, some walking trails, and some Native American ruins in addition to the playground area! I’m anticipating a lot more exploration there…

Rondel and I stood under this palo verde, by the flower-crowned organ pipe cacti, and held very still so we could listen to the buzzing drone of all the bees over our heads. The branches were probably a good two feet above my head and we could still hear the hum loud and clear.

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Limerick learned the hard way that even the flower buds on cacti have prickles!

In a similar vein, I learned today about the concept of an urban farm preschool, where very young children who don’t live in a rural environment can still have daily exposure to the natural environment – to experience firsthand the ever-changing beauty and wildness of nature, to see how plants grow and bear fruit and die, to taste and touch and feel living things every day, to grow comfortable around dirt and animals and the unsanitized processes of the natural world. There’s another idea added to my catalog of small businesses I’d be interested in starting some day!

What are some of your favorite ways to encourage your children to play outdoors, especially those of you who live in more urban settings? How do you think our society as a whole might do a better job of enabling outdoor time for both children and adults?