I wrote a piece yesterday that I set back to private regarding a parent-student interaction thing.
I walk a tight line with confidentiality and trying to help inform other leaders about Autism in education. I think I was alright with that post, but if I get “outed” by identity, my school is so small, each player in that post will be instantly recognizable. That’s not okay.
While that post gave me some good feelings because it helped me to justify why it will be okay whether the child in question stays or leaves, I have spent all of today in Autistic overload due to anxiety. I don’t think it’s because of the post per-se, but because of dreading the follow-up conversation with a neurotypical parent which will happen tomorrow morning. As a Catholic institution, we remember that parents, not schools, are responsible for their own parenting decisions. It is his mom’s right to do whatever she sees fit, and I do applaud that right because I profit from it as a parent of a homeschooled child.
But as an Autistic who lives with anxiety as a “normal” fact of life, the implication that I know less about her child’s neurology than she, herself, or the neurotypical establishment doctors know, hurts me, too. (By the way, Autistics, for “fun” look up anxiety symptoms…you’ll probably find you live like this ALL THE TIME. It’s actually NORMAL for you, so you don’t think these are actual conditions neurotypicals do NOT experience all the flipping time and if they suddenly do, they ask for help. Who knew?)
Here’s more on anxiety and masking: the endless cycle.
When you talk to people in the Neurodiversity movement, one thing may stand out: Autistics may tend to focus on what we do well rather than focus on things we do not do well. This makes one wonder whether Autism, ADHD, Dyslexia, Dysgraphia, or other brain-based differences are actual disabilities. So, let’s talk about that.
There’s a good Huffington Post Canada article that details some of the costs about being Disabled. The article focuses primarily on the big-ticket items (mobility devices, etc.) but does mention food costs can be more expensive due to dietary restrictions. This is an area where the ABC show Speechless is very honest; the family does not live well. One parent works and the other is thereby more available to help the Disabled child in particular, but also the traditionally-developing children, as needed. This is not a luxury; it is a necessity. They even move into the most run-down house in the nicest neighborhood possible. Why? Better opportunities for all of their children. This is one way in which the show demonstrates privilege in the Disability community; the family is poor, but not so poor they can’t move somewhere else. This is most definitely a privilege not all families have.
Let me mention at the outset that there are government funds for Disability in the U.S., but they require a family to live in poverty in order to obtain the funds. They limit how much the family can earn and what the family can own. The idea underlying this is that we’ll help you if you’re really, really poor, but these funds aren’t to help you live a life on par with the non-disabled person. Instead, they are a ticket to government scrutiny and shame and to keep you from becoming more of a drain on the public’s funding. The strings associated with such funds keep a poor Disabled person poor and Disabled, but they can be a lifeline for many.
I wanted to share with you some of our family’s expenses that are “luxuries” to some and to point out how they are not for us in order to understand the costs of being a family with hidden Disabilities.
My Monday class was a bit unusual. We were supposed to identify emotions and how they appear.
I had no idea it would be a major big deal.
This is funny because it’s not that Autistics don’t have emotions; we do, but no one ever thinks about how we are taught to express emotions and to interpret these emotions. It’s not overt, but neurotypicals can typically pick up this stuff without too much difficulty (side note: I wrote “humans” in this sentence where I swapped it out for neurotypicals. Funny how that slipped out there). My teacher seems to think that people just “know” this stuff. She made us list some emotions and then put us into groups to show the outward and inward feelings. As in, what does your body do and what it looks like to others. Fortunately, my partner for the activity was in my blogging class and is a teacher, so not only does she know I’m Autistic, but found the whole thing hilarious with me (laughter is the socially acceptable interpretation of the feeling you get when you realize you’re being asked to do something that your Disability makes quite difficult as if it’s easy) that I would be trying to “interpret” emotions. She picked “sadness” for us because she figured out, somewhat intuitively, that happy/sad/mad are easier emotions to interpret. My son, when he was diagnosed, could usually get happy no problem and sad if there was crying. While I do better than that, she was right since I knew apathy and excitement might be difficult for me.
This is an edited version of a piece I wrote a year ago, around this time. It still holds (and irritatingly, I keep seeing Tweets from fellow Autistics that we would “get along” better if we’d stop promoting Neurodiversity) even if the specifics are different now.
I was going to write a little post about “random thoughts” and they sort of congealed, when I also thought about The Silent Wave’s post about Neurodiversity yesterday. I’ve written in the past that I believe that Autism (or really any part of Neurodiversity) is not in itself a problem. An exception I can think of is perhaps schizophrenia, and even then, it’s only an issue when the voices want you to harm yourself or others. The voices themselves may or may not be harmful otherwise (but this is an area of the Neurodiversity tree I don’t know as well, so I may be wrong on that). I’ve blogged about the Social Model of Disability before, and it bears peeking at if you don’t know the difference between the Social and Medical models of the world. The TLDR reason is that Disability is not a problem; SOCIETY is the problem and until society stops presenting barriers, we will remain disabled. The classic example is someone in a wheelchair is not “disabled” until he or she cannot find the stairs. That’s what society did, not the Creator. So once you start seeing the world as the problem, not you, you do get a whole lot more positive about Disability.
So, here are my random thoughts that somehow connect to this:
*This is an oldie that got inadvertently buried. Given its popularity around New Year’s Eve, 2016, I wanted to make sure people saw it.
I modified this absolutely wonderful piece by Peggy MacIntosh (which I remind you all to read every so often) to focus on Neurodiversity. I haven’t seen a Disability adaptation, and, while I’d like to make this broader to include more types of Disability, I only know my own area of Disability, so I thought I’d give it a whirl.
neurotypical Privilege: Unpacking the Invisible Knapsack
(a modified list based on Peggy MacIntosh’s seminal piece on White Privilege)
1.I can, if I wish, arrange to be in the company of people of my neurotype most of the time.
2. I spend money on electronics and “gadgetry” as a discretionary part of my income; if I can’t buy it now, it will not impede the quality of my work and/or social life.
3. If I find a tag in a clothing, I can wait until I get home to remove it and go on with my day as usual.
4. If there is a strong smell in the building, once I have recognized it, I will ignore it and go on with my day as usual.
5. If I struggle to speak, people will allow me to take my time to recover and will not speak for me unless I give them permission.
6. I can turn on the television, browse the Internet, or open to the front page of the paper and see people of my neurotype widely represented, not just in “inspirational” stories, fear stories, and/or crime stories.
7. I can browse the Internet without stumbling upon a group that would destroy people like me because my neurotype deviates from the norm.
8.When I am told about our natural heritage or about “civilization,” I am shown that people of my neurotype made it what it is.
9. I can arrange to protect my children most of the time from people who might not like them.
10.I can swear, or dress quirky, or not answer telephone calls without having people attribute these choices to the lack of social skills of my neurotype.
11.I can speak in public to a powerful group without putting my neurotype on trial.
12.I can do well in a challenging situation without being called “more than my neurotype.”
13.I am never asked to speak for all the people of my neurotype.
14.I can be pretty sure that if I ask to talk to “the person in charge,” I will be facing a person of my neurotype.
15.I can go home from most meetings of organizations I belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, or held at a distance.
16.I can disclose my neurotype at work without having co-workers on the job suspect that I get preferential treatment because of my neurotype.
17.I can disclose my neurotype at work without having to worry that my co-workers will be afraid of me.
18.I never have to worry about whether to disclose my neurotype at work since my neurotype is considered to be “normal.”
19.If I disclose my neurotype at work, I do not have to fear being fired as a result of that disclosure.
20. I can be sure that if I need legal or medical help, my neurotype will not work against me.
21.I can tell friends, family, colleagues, and strangers about a condition I experience without being questioned about whether or not I really have that condition.
22. If my day, week, or year is going badly, I need not ask of each negative episode or situation whether it has ableist overtones.
23. When I talk about my special interests, people don’t call them obsessions or ask me to change the subject.
24. When I disclose my neurotype, people won’t tell me that I should hide it because people don’t need to know.
25. When I disclose my neurotype, people won’t tell me stories about other people with my neurotype and how they “know all about” my neurotype from those one or two experiences.
26. When I disclose my neurotype, people don’t compare me to a celebrity of my neurotype and ask how I’m like him or her.
27.I have a reasonably good handle on how much, or little, work I need to do at my job to avoid negative consequences.
28. When I try to talk about my neurotype and how it affects me, no one tries to tell me “everyone feels like that.”
29. When I make parenting choices, or any choices, my neurotype will not be used against me in judgment of those choices.
30. The number one group supporting people of my neurotype does not actively seek to eradicate my neurotype.
The Girl with the Silver Eyes by Willo Davis Roberts was first published in 1980, it is still available (check out Scholastic’s book club!) and continues to be relevant even today. Read more about how this book resonated with me as an Autistic tween.
We have this otherwise banal hymn we do every so often in Catholic Masses that has this rather amazing chorus in terms of the words:
We come to share our story,
we come to break the bread,
we come to know our rising
from the dead.
At first glance, there’s not much here, but it’s really everything about the Mass. For those who aren’t Catholic, we always do Mass in two parts (and we’re efficient as heck with it; when I was Lutheran, we didn’t do communion every Sunday, but when we did it took FOREVER, but I digress). So, the first part is always story-telling. We call it Liturgy of the Word. We read two or three sections of the Bible and share part of the Psalms. After the Liturgy of the Word, we have Liturgy of the Eucharist (the holy communion part). What’s really neat, linguistically, about a Catholic Mass, is figuring out where all the words come from. At one point, we had a poorer translation when it moved to English, for example, and said “Lord, I’m not worthy to receive You, but only say the word and my soul shall be healed.” Sure, that was LITERALLY what we were preparing to do (remember, Catholics believe that the Eucharist IS the body/blood of Jesus, not a symbol). Instead, we now say, “Lord, I’m not worthy that you should enter under my roof, but only say the word, and my soul shall be healed.” If you know your Bible, you’ll know this is EXACTLY what Zaccheus said when Jesus picked him out of a crowd, sitting up in a tree so he could see Jesus walk by. At every Mass, we tell our story, and we tell it over and over again.
If you’re a wordsmith, you can’t help to be fascinated by how various faith traditions share their stories whenever they gather together. It’s their story for them and also to explain to all comers.
I know I’m losing some of the non-religious of you out there, but stick with me. Let me tell you a little story that I saw recently. Have a look here if you want the whole thing. I must admit it originated in Buzzfeed, apparently, but I’m willing to buy it happened because it’s the kind of thing that HAPPENS.
So, Marlee Matlin, award-winning Deaf actress goes up for a role in which the character is (wait for it) Deaf. The role later goes to a hearing person. They later have the audacity to ask Matlin to coach the actress in “how to be Deaf.” What was interesting was, when this was posted on The Thinking Person’s Guide to Autism, the first comments were that “well, maybe she wasn’t the best fit for the part.” Maybe she wasn’t, but shouldn’t a Deaf actor play a Deaf character? Matlin would likely have coached a Deaf actress who was new or feeling apprehensive about how the hearing audience might “read” her Deafness even if she didn’t get the part herself. This would be an inoffensive request. But to ask her to help someone pretend to be Deaf, which comes with it a culture, a community, and even its own freaking language (btw, American Sign Language (ASL) is not “translated English”…have a look at this great story to get a feel for how the language looks, in print form: http://www.deafpoetssociety.com/raymond-luczak-prose; we were fan-girling (and fan-boying) over this in editing class; it’s a good story, not just a “gimmick”). So, yeah, it’s like saying, well, we needed a Black actress, but we decided a white actress would be fine here, and we’ll find some Black actress to teach her how to be Black.
As you might imagine, my school is a haven for those who have been bullied in previous institutions. Because we are small and we are also multi-age, it’s a lot harder to do that thing where kids decide (never the adults, do not kid yourself into thinking you have any say about popularity in a typical age-graded institution) who is and is not acceptable. Also, because we follow the philosophy of St. John Bosco, we actually hang out with and play with our kids a lot more than in traditional schools. We do this to mentor them more effectively and also to watch out for trouble spots.
Let’s think about a traditional school for a moment. In a typical school, there are 15-35 kids in each class (the exact number varies dramatically) and based on the historic segregation of Disabled people as well as people of color, the kids are typically one race and “abled” enough to be tossed into “gen pop” (those so Disabled that they make teachers’ lives too hard in gen pop get hidden in segregated classrooms).
There is one teacher or sometimes there might be two adults. The children greatly outnumber the adults.
And all the kids are the same chronological age.
No wonder they so easily ferret out who is different and make school a living hell for those people who don’t pass muster as “worthy.”
But my school is different.
My school is multi-aged (K-8). Currently, we are not as culturally diverse as we were, but we are diverse in terms of socio-economic levels and abilities and/or neurotypes.
(I should make a quick note here that historically people of color are reluctant to homeschool, or engage in alternative-type schools unless encouraged to do so by the public school authorities. It’s not because they don’t want to or can’t homeschool or look for alternative schools; however, there is heightened risk in parenting differently when you are a Person of Color. Many school authorities have bullied Black parents with a call to child protective services if they don’t raise their kids the “right” way. With longer-term success, I hope we can have more culturally diverse families using our program since it won’t be an “experiment” any longer.)
When children are constantly confronted with peers who are different ages, genders, races, and neurotypes/abilities, they are more acceptance of difference as no big deal. When class sizes are small, kids learn quite quickly to make do with whoever is in the class with them, too.
Normally, all goes well here.
But we take what we learned from the “outside” with us.
Sometimes, I have to explicitly teach friendship to my students.
Here are the main rules I give them, with adjustments made based on specific circumstances.
My little guy stayed up all night again last night. He’ll sleep eventually, either later today or tonight. One of the beauties of homeschooling is we can just work around these phases.
They do happen to kids who are traditionally-schooled, too. They just have to deal with it (sadly) and go to school in their increasingly zombified states. I imagine a fair number of times they have meltdowns at school. (Speaking of meltdowns, I’ll repost something on those soon. The brief version is they LOOK like tantrums, but unlike tantrums, they cannot be controlled by the Autistic.)
The last time we went through this no-sleeping or limited sleeping phase was a few weeks ago. In the middle of it, his neurologist’s office sent us an e-mail that I found bordering on offensive about trying to keep a routine to avoid sleep problems. You see, the experts believe that if we keep a routine going then somehow, magically, our Autistic kids will sleep. They think if we take away screens a million hours before bedtime, our kids will sleep better. This is true, perhaps, of neurotypicals, but the amount of screen time our son has each day (Microsoft sends me an e-mail each week with the total of our son’s computer time) doesn’t seem to correlate at all with his sleep. Take a moment and think over your own, adult life. Do you always have a predictable routine, or not? Doesn’t life happen? Do some of your insomnia nights connect to being on the computer all night, but others just…happen?
It’s worth noting that sometimes when our bodies are growing, we either sleep a lot more or a lot less. When my little guy was younger, he slept more. Now, it seems, he sleeps less. We also noticed, in speaking with my aunt who has a probably Autistic daughter around my child’s age, that the days she uses less executive function, she stays up later. The more choices she has to make, the more she sleeps. She used to sleep very early, like around 7 p.m. when she was traditionally-schooled, but since she’s been homeschooled, she’s calmer and gets a whole lot more schoolwork done…but some nights, she just can’t sleep.
So it can’t be JUST about routine.
Why should we keep our Autistic kids in a bubble of routine, exactly?