It certainly can be noticed that late. I have been reading articles lately that question the accuracy of diagnoses that assign the child a specific place on the spectrum, i.e. HFA, LFA, etc., that happen so early. It is hard to tell anything about a child that early. Get him diagnosed if you think the services would help him. If he comes out of the tests with a label, remember that he is the same kid he was before. All that has changed is that you have more tools for formulating strategies to help him.
The good news is that autism is not the worst thing that could happen to your family. These may take the edge off the worry:
Try to make sure the goal of anyone who works with him is to help him live comfortably and maximize his potential, not to change him. You may not have a choice. Look for that if you do. I would be lying if I said it would be easy. The world is unkind to people who are different. Your nephew clearly has you in his corner. His loving family improves his prospects wherever he falls on the spectrum and gives him a solid chance at a decent life.
We took my son on a pilgrimage to the Bronx for an evaluation three months after he had a frightening regression in March. He had been receiving early-intervention services for three months and was improving, and then the light in his eyes began to go out. He stopped looking in my eyes, and when I caught his chin in my hand to look in his face, there was nothing there. He was irritable and spun in circles most of the time, and when he did sit down, he kept pushing the same button on a musical toy over and over and couldn’t be engaged. He didn’t even like his beloved books anymore. My son was gone—there was no spark in his face, no sign of life, just dead eyes.” —
Little Boy Lost by Amy Leal
I’m a so-called “regressive autistic”. I lost language skills when I was a small child. I also experienced something rarer, in that I also lost a bunch of different skills including speech, gradually starting in early adolescence.
Thing is, I’m still here. I’m not dead even though people have described my eyes in that and even more offensive ways. I would still be here even if I lost the typed language that I still have. The essence of who I am does not depend on facial expression, on my ability to command my body and have it do my bidding, on whether I have access to using or understanding any language at all. In fact, during the time period when I began losing skills, something else was going on. I was getting more in touch with who I really am. The skills that I find the most important — skills most people can’t even fathom existing — have been honing themselves more and more over time. Some of this is not coincidence. Some of what is required to use those skills is the absence or lessening of others.
But even if the things most important to me were not becoming stronger. Even if who I am was not being distilled down to a more and more intense essence with every passing year. Even if I was not becoming happier, more ethical, more in touch with the world around me in ways most people can’t imagine. I would still be a person. I would still be myself. I would still have life, heart, love, and soul thoroughly intact. And it would still be really fucking offensive to refer to people like me as if we were dead, not really there, and losing ourselves, just because we move or communicate or think in ways different than we used to.
To quote a good friend of mine, also autistic: I’m the one who has to live with the stereotypes you are trying to build. I live or die depending on whether people think I’m actually still here or not. No really — live or die. Already survived one attempt of murder-through-neglect by people who were tasked with taking care of me. They thought the real me was gone too. They wanted me to not be in their mental institution because they would rather treat people who were going to get better. They said these things openly in my presence because I was not enough of a person for them to care. Across the world, autistic people die all the time. Often at the hands of caregivers and parents. When you make us sound less human, less alive, less ourselves, that has the same effect it has on any other group of people: Our lives matter less. People openly kill us because we are not the people they think we used to be, not their real children anymore. So when you say things like this it’s just one more piece that tips things in the direction of our unpersonhood.
And even when not life and death… some of the worst things anyone has said to me were things like “I want the old you back.” The me who was able to do more things. Because people want me to at least seem less disabled. And there’s this thing where who I am now is never good enough. They want the old me. Even if that’s the me who was truly lost and confused. Even if that was a horribly unhappy time in my life. Better to be unhappy and “higher functioning” than happy and “lower functioning”. It tears my heart to pieces when people want the “old me”, no matter how innocent they think it is. (It also suggests they value form over function: Someone who can speak but barely communicate is apparently better than someone who can communicate but barely speak.)
This is all so close to home that it terrifies me. In a world where people like me are already dehumanized. Which leads directly to abuse and murder even when the dehumanization is unintended as such. We can’t afford for people to be spreading this idea that when we “regress”, we lose who we are and all signs of life. And seriously… have you ever had anyone tell you your eyes are empty and dead, your face shows nothing there, you are clearly missing out on what life has to offer, you have the cognitive functioning of an infant, there’s no person inside you, you’re just an empty shell? Because I have, to my face, and it’s more horrifying than any loss of skills could ever be.
I’ve been reading stuff online and learning more about it, but it would be helpful if I could learn more from people with personal experience.
Seriously. It’s your blog? Cool! Doesn’t make it any less shitty to post offensive and immature jokes. And it’s a weak defense.
I’m willing to give you the benefit of the doubt, but saying “I will post what I want!1!11!!” just proves that you don’t actually give a fuck about being a discriminatory asshole, and thus makes me lose all respect for you. Hence the unfollow.
Do you have any tips on how to stop/prevent sensory overload? It only happens when I try to drive- I inevitably get tired after ten minutes because it’s so draining, the movements are really hard for me to coordinate, I have to watch a bazillion different things, etc.
Any similar experiences/advice would be really helpful, because I wanna get this driving thing down XD Thanks, guys.
Consider turning off the radio and using earplugs or use music if it helps. Never drive without sunglasses if light and glare are problems. If I have to drive into a rising or setting sun, I have steampunked welding goggles. The best thing is to find a safe place to experiment and see what works for you.
I got interested in autism issues when I found out I had been diagnosed with Asperger’s at age six. I found out as a teen. Between, I had paperwork that allowed me to type instead of writing by hand, which was painful for me. Every time it had to be renewed, school officials interrupted my life and terrorized me for weeks. Since my parents hid my diagnosis, I never knew why. I was raised as a fragile child. Only a few “ignorant” adults in my life knew too little about labels to consider me a kid, not a tragedy. University of Chicago “experts” told my parents not to expect me to amount to much. That was the course my life took until a band director forced me to play tuba.
I went in thinking it was an outlandish idea that could never work. I got home and told my parents to start saving up to buy me a horn. I had been shy, sedentary, bullied, and miserable for most of my life. Suddenly, I was doing backbreaking work, making snap decisions with no margin for error. Freed of my learned helplessness, I became type-A* with a vengeance, started doing well in school, got hopelessly overscheduled, and entered my current state of chronic sleep deprivation. Once I crawled out of my own rut, I felt called to help others. The best way for me to be the protector I lacked as a child involves a law degree.
Happy holidays to you, too.
*Yes, I know that is not a real thing.
Why do people have such strange reactions to finding out I play tuba?
I am a girl who plays tuba.
Why is that any more shocking than a person who plays bassoon? Nobody likes bassoon. Not even most of the people who play it.
But a girl tuba player? Shock of their life.
It’s not even that uncommon.
I’m the only girl tuba player at my college.
But there are only 8 tuba players there, in total.
And there are over 400 music majors.
Am I missing something?
When people call kids who have Autism “Autistic,” it really bothers me. That’s not the proper way to address them. Say they have Autism. It’s more respectful.
Did you know that some kids who have Autism know they have that disability?
Not many people do.
So, next time you hear someone call another person “Autistic,” correct them. Do that favor for me.
Next time you interact with someone on the spectrum, ask what they want to be called if it is possible. I am not a person with autism. I am autistic. It is a fundamental part of who I am that society decided to label and other. It is an inextricable part of my nature, not an external thing stacked on top.
Please stop saying “kids with autism” or “autistic kids” when you mean “people with autism” or “autistic people.” We grow up.
we’re all different. we all have our own experiences. stop trying to make us all fit in the same box.
- gay women
- queer women
- poor women
- trans* women
- women of color
- non-western women
- men (yes, feminism is about men too)
Feminism is about gender equality. The moment you erase anyone just because it doesn’t make for as catchy a slogan, you’ve kinda missed the point.
- disabled women
- non-binary folk
- people of all ages