Autism Awareness April

April is Autism Awareness Month, sponsored by the anti-autistic group Autism Speaks.  Too often that means the spread of misinformation and stereotypes, and a tone of doom and gloom.

To combat this,  I will be writing a blog post every day in April addressing facts and falsehoods about autism, as well as what it means to parent an autistic child.  I will be linking back to numerous blogs by #actuallyautistic writers because they are the ultimate autism experts.

I’ll be writing about common therapies, less common therapies,  proposed diets, gut issues, parenting narratives,  career possibilities,  and the Judge Rotenberg Center.

Eggselent

Even though I’m an atheist, I love all things Easter egg. When I was a child we’d dye our dozen eggs each the night before and my grandma would skip church to hide them all. Our family decorating trick was using white crayons to mark our eggs with our initials before putting them in the vinegar dyes, so we could know when we’d found the right ones.

Here are some other nifty egg decorating tips from around the internet.

Crayons
Any color will do. Write or draw before dying your eggs. The crayon wax will create a barrier protecting the eggshell from picking up dye.

Markers
Permanent markers like Sharpie dry quickly and don’t permeate egg shells. Create elegant black and white eggs, dye the eggs before drawing, or use colored markers to draw Spring flowers.

image

Stickers/Temporary Tattoos
Either add these to dyed eggs or skip the dying entirely for a fast and less messy approach.

Silk Dye
There are multiple tutorials on turning old silk into amazing patterned eggs. Here’s a picture version.

Eggshell Carving
This one is the opposite of simple but I do love marveling at the results.

Victorian Lace Egg Carving Video from the Feathered Nest, Bishop Hill, IL: https://youtu.be/_XZ-TFuIxDQ

Kid’s Idea

Special guest blog post by my son, “Kid”.

Kid wanted to make a Wolfgang power suit. Once he plays the guitar that’s equipped with the suit, it will blow everyone’s mind! (And probably other things.) When that is over, there won’t be any problems with people thinking girls are pretty and boys are ugly anymore.

Hi, Beautiful

Yesterday my son and I were downtown, people watching and strolling and enjoying a nice day. At one corner with a lot of pedestrian traffic, an older man sat in a wheelchair wearing a “Jesus Loves You” shirt and calling out “Hi beautiful” to all the women who passed by.

“Hey beautiful, nice hair you got there,” he said while I tried to keep my eyes straight ahead. The first time we passed him, I was too surprised to say anything to him, but I did lean over and tell my son “Street harassment for Jesus is a new one to me.”

I put him out of my mind and continued hanging out with my son, stopping for a photo or to laugh at a funny bird or whatever. As we walked back, the man did it again “Hey beautiful!”

I turned to look him directly in the face. “I don’t like strange men calling me beautiful,” I told him.

“You don’t like being beautiful?” he asked in mock shock.

“No, I don’t like *you* telling me if I’m beautiful or not. It’s not your job,” I said.

“Yes it is!” he replied. Then he started telling me if I didn’t like what he had to say, that was my problem.

I muttered something like “Just shut your mouth” while grabbing my son’s hand to go.

As we walked on, I felt a need to explain my reaction to my son. So we talked about how the man we saw was only calling women beautiful; he was treating women in a way he wasn’t treating men. And we talked about how quickly he became angry with me for not liking what he had to say. He didn’t care if his compliment made me feel good or not. He was displaying power. And I pointed that out, and he was mad.

I hope at least my son learned from yesterday.

The Choice Not To Abort

Decades before she become a cult leader, my grandmother was a young mother. She had married well and had four daughters in short succession. The fourth died of a congenital heart defect; no one’s fault, but not something she could easily live with either. A few years later, she found herself pregnant by her second husband and also diagnosed with uterine cancer.

So many people pressured her to abort. “You have children at home who need you”, they said. And I think she must have felt so terribly alone. This was the 1960s. Obstetric, neonatal, and cancer treatments were all different, with much harsher odds back then.

She made the choice not to abort, to take a chance and roll the dice that she and baby could make it out okay. And they did. But even if they hadn’t, it was her choice to make.

I think we all have ideas in our minds of the “right” circumstances to give birth and to abort. When someone else makes a decision so different from what we imagine we would do (or know we have done), it can be hard to accept that choice as legitimate.

If you are used to defending the rights of ill women to terminate their pregnancies, it may be hard to accept a woman who wants to see things through no matter the risks. And if you’re used to ensuring teens have access to abortion rights, seeing a teen choose to go through with pregnancy and parenthood at a young age can be heartbreaking.

But choice always matters. We cannot make these choices for someone else, no matter how much we believe it would be for their own good.

Poor Phone

Sometimes poor people own nice things. Sometimes they own smart phones. Sometimes they own a nice handbag, or a designer pair of shoes. Sometimes they own a family heirloom. Sometimes they own a refurbished tablet they got second-hand. Sometimes they own a car, maybe even a nice reliable car.

Now, my impulse here and the impulse of many authors is to excuse and justify those possessions. It’s a habit poor people learn early, to defend anything they have against the jealousy of people who have more. “I got the TV on sale”, “my dad pays my phone bills”, “we owe more on the car than it’s worth”. But I’m going to resist that urge and not defend the right of poor people to have material possessions by explaining how they deserve or need them.

Instead I’m going to point out how wrong this framing even is. We’ve got this cultural idea that how poor people spend money is everybody’s business and everybody gets a vote. It’s why we want to explain “They use that phone for work!” or “It’s for emergencies with her kids!” We want to say they’re allowed to have it, because it’s an actual need. We’re not too concerned with addressing the wants of others. So we make sure everyone sees our phone as a need, not a want, no matter how much we want it, how much joy it brings us, how much safer it makes us feel. We have to frame it as a need – usually for someone else’s benefit – to be allowed to have it.

Fuck. That. Poor people should get to have phones. Poor people should have enough food. Or maybe try this radical idea on for size: Maybe we shouldn’t have poor people.

A Letter from a Chronic Disease Patient to a Doctor

This blog post is largely written in response to “A letter to patients with chronic disease” published here.

Greyscale photo close up of stethoscope

Greys cale photo close up of stethoscope

You say we scare doctors. We bring them to the limit of their knowledge and force them to confront it. I have to say I think doctors scare me more than I scare you. When you’re health is chronically ill, you have a lot more to lose if it’s a bad match between patient and doctor. You have to recognize that you’re not a god? My body tells me that daily. You risk spending time with a patient whose body will not praise you with recovery. We risk our health and lives and progression of disease. If you’re scared, I’m terrified.

What’s more, I don’t think we scare all doctors. Some, like you, are probably scared. Some are repulsed. Some are busy. Some don’t care. Some are openly hostile. Some diagnosis us as “fat”. The deferential approach outlined below may work with some doctors like you, but other doctors will think it means we don’t care about our health or that our symptoms are not as serious as they are.

We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

We are not stubbornly denying you the security you crave or the miracles you want. Our diseases happen to us, not at you. No one is as frustrated by my disabilities as I am. No one wants a miraculous cure more than a patient who has exhausted every resource and still isn’t better. If you can’t see us as on your side against our disease, you’re going to have a tremendous problem treating us.

When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.

Do you imagine for one moment that illusions of control and power have not been shattered for the people living in broken bodies and with broken minds? Do you imagine we do not get angry, feel insecure, and wish that we could move on? Can you hear how self-interested your desire to fix, save, and impress an easier patient sounds? I don’t want to have to know or care how my doctor feels about a disease I live with every day. I’m seeing a health specialist for my benefit, not theirs.

It feels profoundly lopsided and unbalanced to ask emotional labor of chronically ill and chronically exhausted, frequently impoverished people. Especially at their doctors office, where they have insurance and medications and prior surgical history to keep track of, as well as whatever brought them in to your office that day. I’m sorry my IBS doesn’t make you feel super human; imagine what it does to me.

You offer some general advice to patients – that we don’t come on too strong, show respect, forgive our doctors, but don’t work with jerks. Sadly you didn’t give very concrete advice here that may have helped. How can a patient tell which doctor is having a bad day because they feel existentially insecure in the face of my body and just needs a few years and some forgiveness, and which ones are jerks who don’t care and don’t respect their patients? Some specific examples or guidelines would have helped here.

I’m not entirely sure how much this advice will help. It certainly seems to take the focus away from the patient – the one with a chronic and serious health condition which has led them to seek out medical care in a capitalist for-profit medical system – and place it on the secure person in the scenario, the one whose health is not at risk and will not be jeaopardized if the relationship is out of balance.