This is one of the hardest things I have had to admit. I somehow believe that I am to blame for the measles outbreaks we are experiencing today. Somehow, it feels that antivaxxers are using my existence to not vaccinate their kids, and causing all these cases of measles.
The thing is, there seems to be a pervasive feeling that I am hated for existing, and that my very existence makes parents sick, and therefore they don’t vaccinate their kids, and that makes their kids sick. I can’t help but wonder if I am causing all this pain in the world.
Well, a few things came up. The first was this picture.
Here are a few others you might be familiar with:
Freak, Nerd and Rape Victim
Yes, even Rape Victim. Every autistic woman I know has been raped at one time or another, even myself. My own experience is in the gray area, because I only consented to avoid saying I was raped. But on to the point: Your child will get a LABEL anyway. Make sure it’s a label that actually gets help.
Another was the latest episode of Mom. It’s February 21, 2019. The title character on Mom (Bonnie Plunkett) learned she had ADD. And she’s in her sixties. And she’s fighting being sober from various drugs (and alcohol; I lump it in among the others). She had said her life was harder without the diagnosis. I must say, my life was hard, but living without a label, a diagnosis, is harder. And why do you want that for your child?
I recently came across an argument – people getting weighted blankets to help them with sleep was a form of cultural appropriation. I was wondering: is this true?
I’ve never really considered this argument. But you can make a case for both sides.
First, that weighted blankets at Target is disability cultural appropriation. I can see the argument simply because disability aids and fidget toys, such as fidget spinners, became a fad. (Remember those? I still have mine.) They only became popular when abled people took them up. You could make the case for weighted blankets undergoing the same abled person pickup. It literally took the abled people taking up weighted blanket for them to even show up at Target – and they still do not come in queen size for my bed! What a shame that it takes the abled people to pick something up to become available for people who cannot make the something. That’s the textbook definition of ableism.
The argument against abled people taking up weighted blankets as cultural appropriation is another side. Basically, that something once used for autism, anxiety, and other disabling conditions is now used by abled people might just be natural because abled people see the aid can help them, too.
I see nothing beyond the above for these arguments, but I am disturbed by that fact that disabled people are not allowed to take control of their narrative the way other marginalized cultures do. We still need to pitch our disability aids to abled people to be able to even get them. Fidget spinners, fidget toys and weighted blankets are prime examples of this. Most abled people cannot see past the ends of their noses when it comes to us.
The sad thing is, my mother does not even know about the weighted blanket, so I do not have one.
Well, the big news is that Christmas movies are on, but I’m going to focus on one movie that came out in 1985. It’s a small movie, and not getting a lot of good press on Rotten Tomatoes. It’s called One Magic Christmas. The big thing is, this movie deals with a lot of sadness. The central family has fallen on hard times, and the mother does not see what there is to celebrate.
The trouble with the movie starts on Christmas Eve. There is a bank robbery, and the dad is murdered. Then the robber gets into the car with the two children inside. There is a chase, and the car falls over a bridge into a river, with no survivors.
At this point, my mother and I are both wondering, “What kind of Christmas movie is this?” Not realizing, of course, that It’s a Wonderful Life deals with the even more un-Christmassy subject of suicide. I think sad things have their place in the Christmas movie. Fortunately, Christmas magic is on hand to save the family, even the dad. (This is where the spoilers end, people. I’m not giving it away for you.)
Maybe I’m missing the point. I’ve seen Christmas magic do crazy things, even bring people together. I guess shocking content is nothing new. It’s just not given a real chance on most Christmas movies. One Magic Christmas deals with more real-life situations than most of these movies, which deal with fairly rich people. This one deals with the lower middle class.
And what does the mother in the movie have to celebrate? Lots of things! Maybe that’s the point of the craziness.
I know you are somewhat scared for your son. What will he be able to do in his life? Will he need constant care? Will he be able to take care of himself? Is there hope for him? Autism is a big pill to swallow. But there is hope, and there is hope for your child.
I need to tell you a few things about myself. I am an autistic adult. Which means, I was one of those autistic kids. It’s not that hard a jump to make. I have held down a job for six years. I currently take care of my mother full time, and maintain a small home. I talk like a non-autistic. I even do the cooking at home, too. It’s a little hard for me to make friends, but I would not judge your son by my yardstick.
I’m not exactly sure if you have a proper yardstick to measure your son’s abilities by. Nobody really knows the potential a person has, even an autistic one.
I have a few things for you to consider.
I believe in vaccines. I believe vaccines did not cause your child’s autism. I don’t know where you stand on this issue. Many people do believe this, though, even many celebrities. This fear has caused many outbreaks of once-eradicated diseases. Be careful who you trust.
Autistic Adults are not morons. Actually, most autistic adults have a perspective that many parents of autistic children do not consider: the perspective of the autistic person themselves. Who better to help a person with a trait or condition that someone with the same trait or condition who has been down the road a bit? There is a reason certain conditions run in families!
Be Wary of Applied Behavior Analysis claims. Applied Behavior Analysis – ABA – was formulated to make the autistic child “indistinguishable from their peers,” or to make them seem non-autistic again. The truth is, your child is not a potential non-autistic. They were always autistic. They were born that way. I was born that way. Be careful how ABA is taught to your child. He might be taught how to behave in public, but make the boy non-autistic again? Not going to happen.
Listen to your child. Every bit of behavior is communication. They may experience the world in a completely different way from you, due to sensory processing issues. Almost all autistics have them. If he starts to stim, then consider the surroundings. Is he uncomfortable?
Do not be afraid of stimming. Stimming is a comfort behavior. As long as he is not hurting himself or anyone else, self-comfort is a good thing. If his stim is harmful, I would suggest getting a small toy or game to stim with. Any autistic adult can have a suggestion that helps.
Delays in growth are not denials. I was older than five when I finally asked my first question. I was delayed in almost everything social and acceptable throughout my childhood and early adulthood. But keep going. Most of us autistic people are verbal by adulthood. Many of us work jobs.
When he gets a Special Interest, let him study it. It might be something like buses or trains, or airplanes…it might even drive you and yours crazy. But hang in there. He might be going toward his ultimate career choice in the end, and he’ll possibly outdo others in the field. Is his special interest the airplane? He might be a pilot or mechanic. Is it music? A great musician. You never know.
Be Wary of Autism Speaks and Other Cure Crusaders. The notion of cure in autistic circles is akin to eradication of autistic people themselves. They see autistic people as a big scourge that must be destroyed.
This is by no means an exhaustive list. If you have any questions, feel free to contact me. My email is: firstname.lastname@example.org.
Strangely, there is a lot of stress at the beginning of our family Christmas holidays, and at the end. My first stress is simply this: putting up decorations. The decorations, I’m sorry, are very disruptive in my house.
Here is what I do:
I put a tree in every room. I move our television to another table to make room for the main nativity.
I decorate the table and chandelier above it, as well as the walls.
I take down the fall towels in the bathroom and put up the Christmas towels.
I clear off my dresser and put a bunch of stuff in different places for its little nativity set.
And for the cherry on top, I put a giant Christmas tree right in front of the patio door, blocking my only view of the outside I consider safe to see out of. (There is a giant bush blocking the view outside my bedroom window, by the way.) Besides, the tree has nowhere else to go.
Anyway, Christmas usually has the most decorations in my house. I am still decorating the main tree at this point, tweaking and filling bare spots and such.
Strangely enough, the decorating gives me a sense of stability – that it’s time to prepare for Christmas. I can understand, though, how the décor is majorly disruptive for so many of us autistic people out there. They get in your way if you let them (and many don’t have a choice in the matter!). It’s like those majorly strong cinnamon brooms that used to get in the way of my nose about this time every year. This year, though, the cinnamon brooms were encased in plastic, and I barely smelled them. That’s progress.
If it needs to be, do small Christmas decorations. Not everybody needs to have a Christmas tree which blocks the patio door. A little tree in the apartment on top of the table can be good enough. Don’t worry, dear autistic adult: do your holidays your way.
I’ve also got a few tips for the parent or caretaker of the autistic person who needs more support than I do, along with personal experience.
Involve the autistic person in the decorating decisions. Again, since I’m coming from Christmas, it behooves them to involve how all the distracting stuff falls into place and helps get them ready for the holidays you celebrate. Believe me – getting the decorations out early helps them ease into the holiday.
Rehearse/teach them how to receive various presents. Toys they can handle. What you might want to rehearse is how to receive socks, clothes and the stuff you’re not sure they know what it is. Teach them to simply say, “Thank you for the gift. It is lovely.” On a personal note, I received a wooden oven rack pull, and somebody had to explain and actually show to me what it was. Awkward! But I use that rack pull all the time.
We NEED escape options. I end up going to the restroom frequently for this – but I think I need to explain to my hosts how this works. I don’t want to hog the bathroom all the time. It’s usually boring in there! I’m going to see if this year I can make a quiet space for myself and a fellow autistic relative of mine, if we go this year.
Favorite foods and meals are good – remember, stability is key. In a potluck situation, this is easy to do. Sure, some autistic people can try a lot of foods, but bring the person’s favorites to maintain stability. Go ahead and bring the chicken nuggets, or whatever they need.
LET THEM STIM. Stimming is a comforting motion which expends excess energy from emotion or stress. Leave them to it.
I’ll give a few more tips as I think of them for a lower-stress holiday. They sometimes come slowly for me.
I’m watching an episode of New Amsterdam – and one patient attempts suicide. Fortunately, she survives. Trouble is, there is so much stigma surrounding the family that the patient is worried she will lose her mother’s love if she undergoes therapy.
Here is how the stigma is dealt with:
A judgmental mother. She does not even acknowledge her daughter’s attempt. “She slipped,” she says.
A culture which describes illness as “weak.” I’m not sure if it’s the Asian culture (which is not specified), or 21st-Century American culture. Both are equally hateful of the ill.
They are trying to wrangle around her getting therapy with lies.
Now, the doctor is talking to the mother. He brings up another point: that the mother might have blamed herself.
Now the psychiatrist talks to the patient. She is describing symptoms of anxiety and depression.
Now the mother is admitting she needs help too, after her daughter apologizes.
Anyway, there are a lot of sadness and shame associated with the daughter’s depression. Fortunately, there is a lot of love, and burgeoning understanding, between the mother and daughter. Love wins out in the end.
Do not dismiss this case. Stigma is real. Thanks to stigma, people are not getting the help they need. Thanks to stigma, there have been people in psychosis causing chaos on the roofs of buildings. Thanks to stigma, people are suffering in silence. Thanks to stigma, people have died by their own hand. Why is it not enough that people are suffering and dying to fight stigma? How many people have to die?