Every so often in Catholic circles, you get the mom “helpfully” posting the link of the vaccines which have as a source aborted fetal tissue, or so the argument goes. They claim you cannot vaccinate your child with that version, and that since there isn’t a great MMR alternative, you should never get that.
I completely and fully respect the parent when it comes to decisions about whether or not to vaccinate. I believe the parent, not the government, should decide on what is best for his or her own child.
However, let’s take that stance apart a moment.
I believe in parent decisions because I am a Catholic school principal and I believe that if the government could, it would shut down my school. We have had to fight for our right to exist as a school, and there are even Supreme Court decisions that are involved in a parent’s right to educate their own children as they see fit.
HOWEVER, there are also court decisions regarding whether you can force others to listen to your opinion, whether that opinion be well-reasoned, or, well, kind of nutty.
And you can’t.
Here’s the exchange that was ticking me off today:
Guess whose pitch went well enough that the agent, looking for authentic female voices who also has background in working with Autistic children as a volunteer…greenlighted this person to send her the full novel? Not chapters. Not an outline and a chapter a two. The full novel?
(This is agent speak for: this particular project, I really do want to see and I’m not on the fence about whether or not I want to see it.)
She seemed very nice and nurturing enough (she literally said she doesn’t like to give up on an author if she keeps believing in him or her, even if they have to change direction sometime) that she might be a good fit for me. She also seems to be kind and gentle enough that she might have actually developed relationships with editors in such a way that she stands out. I know New York can be rough; a Midwesterner selling a Midwestern book (she’s sold to all the majors) might be a welcome contact for them in terms of being treated pleasantly, but firmly.
It’s early, and the actual book might not be a fit for her, but I felt blessed to even move to the next step.
This time, I know we moved forward because of my Autism, and not in spite of it, since we spent quite a bit of time talking about what adult Autism looks like and how it can manifest in the novel without completely revealing itself. There is something quite beautiful about that.
I’ve mentioned, before, that I’m doing a job for which I would be paid at least triple what I’m making now, with full benefits when I now have none, if I could work in public schools.
I’m not unhappy I landed in Catholic ed., but even then there are different types of Catholic school jobs. I’m meant to lead the outcasts. On the plus side, we are the only school in town that would be actually making a difference because we are arming our kids to move into the middle class and self-advocate. We take the time to find the right place to succeed.
But on the other hand, the lack of compensation and access to health insurance at a better price than on the health insurance market (our premium just doubled, and we were struggling to afford the price that it was to begin with) is stressful and takes its toll on my health. Among Autistics, this problem is somewhat normal as many of us are underemployed. We can find a job, but it’s the best we can do since the primo jobs are saved for people who can navigate the social structures better than we can, so we continue to struggle.
Here are times I had chances at better jobs, but simply couldn’t land them.
A parent of a former student called me to check in. He’s had a hard time since he left. I agreed to talk to the psychologist about our experiences with him.
I can’t reveal too much (as usual!) about the details, but suffice it to say, if I believed in functional labels (high-functioning/low-functioning), I would say, absolutely, that he was a “high-functioning” Autistic (for new people to the site, I DO NOT BELIEVE in these labels, but I will say he is very skilled at masking; the labels I only mention to serve a point as to how people who others believe are “high functioning” can be overlooked even though there is no such thing as “high functioning”). He’s been skilled at masking his Autism since he was in a tiny school until this year, and as the demands of moving into the tween years get harder, he’s struggling in and out of school. He’s one of those problematic types who is both academically gifted and Disabled, which the public schools have historically had a heck of a time with.
The psychologist was not impressed with my observations. I suspect she will discount them, not recognizing what it looks like to be an Autistic who does not have “Educational Autism” (fancy language in schools for “too good at school to get help”). Without a corresponding academic struggle, he will not be diagnosed and they will continue to wonder what’s “wrong” with him.
But I know him. I knew him last year, and I also knew that his mom wanted him to stay with us this year since she knew he was finally, finally making progress both academically and socially. He struggled at school for years not because he didn’t know all the things but because he lacked the executive function to turn materials in, or the impulse control to do what he was told.
He made so much progress he was three years ahead on standardized tests by the time I was done with him…in less than a year.
And yes, we were actually able to measure him on standardized tests; I’d reduced the stress enough that he was taking them seriously and able to focus on them.
Lest you think I’m bragging about being a miracle worker, let’s be perfectly clear: I didn’t DO anything…but I let him be himself and reduced his stress levels. I removed the meaningless hoops of homework for the sake of homework and requiring my kids to sit in a desk, not move, and not talk. And I listened to him, and argued and debated with him.
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.
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.