This video is an ode to the nonspeaking section of the autistic community. I hope parents and other autistics alike will find value in what I talk about. Because of time constraints, I could not talk about everyone and every aspect, but I included some of the biggest clips and talking points that stood out to me. I do not own the clips used. This video is strictly for education purposes.
Transcript:
Neurodiversity News: Good evening, and welcome back to Neurodiversity News! I know it’s been a long time. I’ve been on hiatus, actually. As you can see from my previous video with Erin Pyper, I got myself a new apartment and just doing my best to live independently. If you’re autistic, I’m sure many of you know that that can be very difficult. So, I took a bit of a break from the videos, besides the one with Erin, because we were just talking and discussing things. But I wanted to make another video for you guys.
This is going to be an ode to the high-support needs people. Because, while I focused on things like Autism Acceptance in the past, I never really went into detail about high-support needs or nonspeaking people, and I wanted to make this video to raise awareness of them and to give them visibility. That is, in a good way. One that counteracts much of the narrative used against them, such as from Autism Speaks or the National Council on Severe Autism. I wanted to shed the high-support needs community in a positive light. And I hope to do them justice. And for those who are watching, I hope I do you guys justice.
When I talk about someone who is high-support needs, what I’m referring to is someone who needs, more than likely, 24/7 care, such as to cook, or to use the bathroom, or to shower or anything of that nature. Now, there are some people who do need help some of the time, but when I talk about high-support needs people, they are people who need those kinds of things consistently. And based on a job I had as a Direct Support Professional (DSP), I have myself experienced such people. Believe it or not, I’ve encountered some autistic activists who have no idea that such autistic people exist, but they do. And I think that they deserve visibility.
But that doesn’t mean that there’s anything wrong with them at all. I care about them very much, and I don’t want a world where they don’t exist, because from what I’ve seen, there are studies out there trying to find ways to reverse autistic behavior or to detect it in the womb, which I’m sure I’ve mentioned in the past, but it’s very scary. And to have a world without them would be very dismal. It would take away diversity… neurodiversity.
From this point onward, some of the things that I’ll be talking about might be a little triggering, so just keep that in mind and just watch the video when you’re in better spirits. I’m gonna go into a little anecdote from that job. So, in my first day at the group home, there was a boy that I’ll name “Adam.” He was a teenager. He had very minimal speech. He spoke in echolalia. And, we were getting his morning routine ready, which was to brush his teeth and to have breakfast. And when we were walking him to the bathroom, there were other kids in the group home who were jumping and yelling and such.
There was a lot of staff there. It was very crowded, and noisy and overwhelming, even for me.
So I could only imagine how it was for Adam. And, once it got to a point, he suddenly just SLAMMED the back of his head against the wall and dropped to the floor, punching himself in the head and yelling. And so, I will just tell you, at first, it was terrifying. Not because I felt that I would be hurt, but because I just felt really bad for him, because of the pain he was going through.
And so what we did from there was we took him into his bedroom and I just stood outside
because I was in the training phase, not knowing what to do. And so, he would say, “say you’re sorry!” to the lead DSP. She would use a timer for 7 minutes, blocking the doorway with a blockpad, which is a piece of foam that protects your body from getting punched, because these clients were prone to aggression. And so after the timer went off, he was calm, we continued on with his day.
These are the type of things that I think people need to be aware of, because they can happen. But, what we need to do differently from Autism Speaks or the National Council on Severe Autism because they don’t do these things out of malice or for no reason. They do it because they’re overwhelmed and because they feel like they have no other option. Because what’s going on internally is so painful.
With myself, I’ve even had meltdowns where I was self-injurious, even into adulthood.
And it hurts. It sucks. But, I think it would be much more effective to prevent any kind of stressful moments from happening, rather than going inside the brain and trying to rewire our circuitry, basically. Whether it be while we’re in the womb, or after we’re born. Either or, it’s very unnatural. We need to do what we can to make the environment easier for them to live in. It may be challenging, but it’ll be worth it in the end.
To me, a good society is one that takes care of its most vulnerable first.
If I word anything the wrong way, please do tell me, and I will absorb your feedback and be transparent, and do what I can to do better.
Now, Adam also had an intellectual disability, which psychiatry.org defines as “any IQ score below 70 to 75.” Now there’s a bit of a problem with the idea of IQ scores, because it is not a very accurate reflection of one’s intelligence. It has a very dark history, and I’m gonna be going into detail about it, because it’s rooted in eugenics, and I feel like awareness of that would be very necessary. I’ll be reading an excerpt from DePaul University.
“Throughout the early 1900’s, eugenicists labored to devise objective methods of measuring and quantifying valued traits, including intelligence in order to substantiate their hypothesis of Nordic genetic advantage. Some of their more preposterous experiments involved measuring the crania of school children, analyzing the facial asymmetry of criminals, and sketching the toes of prostitutes. Eugenicists struggled for years to produce compelling results, until the advent of Alfred Binet’s intelligence scale in 1909 gave rise to standardized intelligence testing, colloquially known as IQ testing. Armed with this so-called objective methodology, American eugenicists advanced a straw-man rationale for large-scale testing. They reasoned that society needed to identify, segregate, and sterilize the ‘feeble-minded,’ initially defined as those with mental disabilities but later extended to include any ‘unfit person of low intelligence, character, or ethnicity.’ In both Germany and the United States, persecution of the ‘feebleminded’ hastened a broader eugenic campaign against immigration, miscegenation, and other professed threats to Nordic ascendancy.”
The fact that IQ tests are even used today is beyond me, because I remember when I was about six or seven years old, they were evaluating me for mental health and were checking my IQ. And I apparently had a very low score. Mostly because I did not want to be there, and had no clue why I was there to begin with. I didn’t know why I was being tested for so many things.
And so later, when I did it as an adult, I got around 100-something on [the IQ test]. So, I don’t think it’s a very accurate representation, because it can fluctuate throughout your lifespan. Depending on different factors. And so, it appears rather flawed.
Now, we need to ask ourselves the question: What does an IQ score even prove anyway? What does one get out of it? Does it prove to people how “worthy” you are? And that is worthy of what exactly? Because everyone deserves to live, regardless of their intelligence level. They should be entitled to a happy life, especially disabled people.
How high-support needs people are framed, in the media especially, is very important. You’ve already seen my review of the film Music, by Sia, which was an absolute trainwreck, as I’m sure anybody in the know would know. But, there’s also a rather obscure video that was made in collaboration with the National Council on Severe autism called “A Voice for Severe Autism.”
It is probably one of the most distressing videos I’ve ever seen in my life, and I thought about including a clip, but I don’t even think I should, because I think it would give anyone nightmares. It shows high-support needs people engaging in self-injurious behaviors, with the narrator talking over it, and parents inserting their anecdotes. The narrator starts by saying, “We face a growing public health crisis in America. The number of individuals with severe autism is on the rise.”
I don’t really know what to think of that, because for one, “severe autism” is a bit of a demeaning term, because whenever I hear it at least, someone describing “severe autism” is describing how severely it affects the family, not so much how it affects the actual autistic person. Because, a lot of the time, those autistics can be aggressive for one reason or another, usually because of distress, their needs not being met, not being listened to, and things of that nature.
I think the crisis here is the fact that these families are not getting support, which I am in full support of. But, when research comes into question, that’s when it can become scary. Because things could very easily go wrong, such as, as I’ve already discussed in my eugenics video, talking about finding the gene for autism and finding ways to prevent the baby from being born, like what happened with people with Down syndrome. Like in Iceland, between 2008-2012, 100% of those babies were aborted. And so that would happen to the autistic people too if they found a gene to see how “severe” they come out. I want to find a way for these autistic people to live without having to resort to selective abortion based on “desirable” or “undesirable” behaviors.
Also, the phrase “on the rise” implies that something horrible is coming, as if the existence of these people coming into the world is a bad thing. Because a lot of frustration can stem from not being able to communicate, there are alternatives. Of course, iPads are nothing new. One thing that many people tend to denounce is spelling to communicate and facilitated communication.
Now those methods have been very effective for the people who use it. I’m gonna be including a clip of someone using spelling to communicate, and how it helped them.
(Onscreen: video clip of a person using a letterboard, with a support therapist.)
Therapist: Gregory, would you want to go to space?
Narrator: The miracle came in the form of a woman with long blonde hair, and a belief in people with autism. With her pencil and stencilboard, she was able to unlock years of silence, like she was waving a magic wand. The boy’s mom cried tears of joy. From that moment on… things were different. The mom and dad talked to him like an adult. He could make decisions for himself. And through lots of hard work, he got better and better on his letterboard. It was the best time in his life.
Something changed within the boy. And he realized he wanted everyone to know how smart people with autism are. So, with the help of his mother and father, he began to do just that.
He began a blog.
He wrote several books.
He participated in book clubs and social groups.
He sat on panels for various webinars and conferences.
He joined a group of other nonspeakers who were brainstorming ideas to get the letterboard used in schools.
He was interviewed for research studies and podcasts. He wrote poetry and short stories, and he showed people his letterboard sessions.
Anything to show the intellect and capability of the autistic mind, and their ability to decide their own future. It is a lofty goal, but a necessary one.
(Onscreen: video clip ends.)
Neurodiversity News: Now see? He may not be able to speak, but that’s not the end of the world. And he found a way. A lot of people found their way of communication by starting with the letterboard. DJ Savarese is one example of someone who started with a letterboard. He got very far in life, and people really underestimated both of these guys’ intelligences. And it’s a shame. They deserve so much better, and I’m glad they are now able to access the things they were not able to access before.
Now pointing on the letterboard may take a little time, but there’s nothing wrong with waiting and being a little patient. At the end of the day, if autistic people are expected to be patient with neurotypicals, then I think we should expect the same from neurotypicals, to be patient with us. You know what I mean?
I wanted to show you what autism means from the perspective of a nonspeaker, that is Kit Autie, who has made a few really awesome videos. And I really like them a lot. I figured they give you a very good idea of what it means to be nonspeaking.
(Onscreen: video of a young person with light skin and short brown hair, smiling and facing the camera. They are using a speech generating device.)
Kit Autie: Hello, folks! I am Kit, and today, I want to answer a question.
What is autism?
First, I want to say autism is a disability. Some people do not want to call it that, but I will explain why I do. One reason people may not want to call autism a disability is because disabilities are viewed negatively and stigmatized. To avoid that, they might use words like, “differently-abled,” “diverse-abled,” or “superpower.”
But the way I see it, that only adds to stigma. If we treat disability like a bad word or an insult and move to using a different word, the stigma doesn’t go away. We are just running from it.
I like to be direct, and I do not like euphemisms. So I just say disabled if I mean disabled. Not “different” or “special” or “slow” or “diverse-ability.” Disabled.
Being disabled is also a source of empowerment to me, because it means I am part of a much larger community with a long history of advocating for our rights. We are more powerful together, and excluding myself from the community, because I am not visibly, severely, or inherently disabled enough, doesn’t do me any good. Maybe one day, society will be so accommodating that autism and some other conditions won’t cause enough struggle to be disabling. But that is not the current reality.
Honestly, I don’t think autism will ever not be a disability, but that doesn’t really matter because, for now, it is. For now, I and others like me benefit from the need for services, rights, and legal benefits that are afforded to disabled people. If we reject the idea or label of disability, we also lose our grounds to ask for differential treatment. And we need the differential treatment.
(Onscreen: Video clip ends.)
Neurodiversity News: I love the way that they were explaining it. Because they were framing it as disability is not a bad word. It is just the way that we are, and the way that we live. And it’s natural, and that’s okay. That needs to be the new dominant attitude about autism, in that sure, there can be challenges, but it’s not the end of the world. Since they mentioned Mel Baggs in the video, I feel like I could not talk about nonspeakers if I didn’t include Mel Baggs. So I’m gonna be including a video clip of theirs called In My Language.
(Onscreen: video clip of Mel Baggs, a white person with short dark hair, using a speech generating device in voiceover as sie stims autistically with hands, water, and other items.)
Mel Baggs: In this part of the video, the water doesn’t symbolize anything. I am just interacting with the water as the water interacts with me. Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as being in a world of my own. Whereas if I interact with a much more limited set of responses, and only react to a much more limited part of my surroundings, people claim that I am opening up the true interaction with the world.
They judge my existence, awareness, and personhood on which of a tiny and limited part of the world I appear to be reacting to. The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization, that people do not consider thought at all, but it is a way of thinking in its own right.
However, the thinking of people like me is only taken seriously if we learn your language. No matter how we previously thought or interacted. As you heard, I can sing along to what is around me. It is only when I type something in your language that you refer to me as having communication.
(Onscreen: Video clip ends.)
Neurodiversity News: Mel Baggs died on April 11, 2020. I really love this video because it shows how autistic people need to be taken seriously and acknowledged and listened to even if we don’t always communicate in the way that non-autistic people want us to. Our voices, especially nonspeaking voices, matter just as much as non-disabled people.
Finally, I’m going to show you a clip from the short film, LISTEN by CommunicationFIRST.
(Onscreen: video clip showing several nonspeaking autistic people being themselves and living their lives.)
Neurodiversity News: The video was made by nonspeakers. It really drives the point home as to why nonspeakers need to be acknowledged and listened to. This video, as well as all the others I included, I think should be watched in full in order to get the full effect of the message behind them. They put in a lot of work to release that video. It actually came out right around the time of when Sia’s Music came out, to kind of get the record straight about nonspeaking autistic people not being listened to. This is a great example of nonspeakers standing up for themselves. Of course, there are some who are just not able to do that because of intellectual disabilities [ed.: and/or because of lack of communication options]. But they will need their families to represent them, as well as us. We want to do what we can to advocate for your children too, and to do right by them and make sure they get the help they need. That is, like supports in the home and such. Not to change their brain wiring and such.
So the parents watching are probably wondering: “What’s next?” Well, what’s next is you could share these videos with others, and to get the word out about them. And hopefully, change the narrative surrounding autism, because too often, in the mainstream, we see tragedy narratives or that autistic people are like a burden, which is wrong. We need to show that even if autistic people need help, that that’s okay. And that you have to be a little selfless, which is a good thing, because we live in a very hyper-individualistic capitalist society that has completely eliminated the idea of interdependence, or made it seem like it’s shameful to need help from your parents.
I’m here to tell you that that’s terrible, because I myself personally was kicked out of my parents’ home and exiled by them because I needed a little help, and I do what I can to live on my own, but it’s not easy.
They didn’t give me autonomy while I was living at their home. And that’s wrong. Even if they live with you, if they’re an adult and they are able to consent, you need to give them autonomy. Even when they’re younger, if they’re a child or a teenager and don’t want to do something, let that happen. Just don’t force things on them. Don’t force them into things. Of course, for something like brushing your teeth and bathing, those are very necessary things. And while being forceful about it is not good, just slowly integrating them into it is very helpful. And being very kind about it and very compassionate at every step is really good. And also, we have to do away with behaviorism.
I already went into detail about that in some previous videos of mine that you could check out and get a better idea of how bad ABA and behaviorism is.
Another thing you can do is to give them greater access to communication such as the letterboard, spelling to communicate that you saw earlier, or the Rapid Prompt Method (RPM). I will be putting resources about all of those things down below. I recommend you all to confront your legislators and fight for increased Medicaid, and to get Direct Support Professionals in the home rather than having to send them into a group home miles and miles away. Increase the funding, get better incentives for employees to want to be hired as a Direct Support Professional. Make sure they get benefits.
The more vocal you become, and the more relentless you are, the easier it’ll be to get what you want. I see so many parents fighting so hard to try to find cures and such. That energy could so easily be redirected into getting better services, without requiring a cure or to take away the child’s autism. Because it’s diversity, it’s a core part of who we are and our identity. And that goes for both those who need 24/7 care, or people like me who have it a little bit easier.
Then again, that’s a bit of an arbitrary statement because I have a lot of difficulties in life, like keeping relationships and self-injury once in a while, and things of that nature. I wouldn’t really blame autism for that, though, because we have been conditioned for so long to believe that only ONE WAY is the correct way, and that’s not correct.
There are so many different ways of functioning and living, and we need to become a much more inclusive society. And to get there, that will require a change in attitude and a change in narrative. And the way that we frame things, as I said before. You don’t have to look at autism as a tragedy. You could look at it in a positive light if you so choose.
Of course, to the autistic people out there, there are those who view it negatively, and your views are valid, but my take is just a little different, because I feel like just for our mental health, for both ourselves and for our parents, it’s better to just look at the glass half-full. If that makes sense.
For the autistic people watching, don’t be afraid to advocate for yourself if you are able. And if you’re not, find whatever way possible that you can. Get people to listen to you. Don’t hold back in what you need to say. And be honest and tell it like it is.
And for the parents, I urge you to be as vocal as possible, whether it be to fellow parents, or to politicians, or whoever. Be that parent that other parents may or may not be turned off by. Be the one that your child sees as a hero. Someone who can meet their child where they’re at, and to love and embrace them for who they are. And to accept every fiber of their being. From the good to the bad. From the peaceful to the not-so-peaceful. Because if you show your child direct love, and to show them that the way they are is okay, that there may be challenges but it’s not the end of the world, your child will see that. Trust me on that.
Another thing I wanted to mention is that there are a lot of parents who go on social media talking about their high-support needs kids’ private moments. Stop it. Just stop it, because it’s really exploitative and harmful to the child by talking about them in their most vulnerable moments, such as smearing feces on the wall or banging their heads against the wall. That’s nobody’s business. Autistic people never choose to do those things. It makes autistic people look like monsters, or like they’re beyond salvation and need to be fixed. It’s just not right, because what if, WHAT IF your child grows up and sees that their parent told thousands of strangers online about an embarrassing moment they had.
If you were in their shoes, would you enjoy that at all? Would that not put you in distress, knowing that your most private moments have been shared to everyone and now the whole world knows?
Just think about it, put yourself in their shoes. And if you don’t want people exposing your private moments online, then don’t do it to them. Don’t have a double standard. Treat them in the way that you would want to be treated. Think of it that way.
This may have turned out longer than I expected, but I hope you all enjoyed it, and I do thank you for watching. I’ll do what I can to release more videos in the future, but I can’t make any promises because, with the COVID-19 pandemic and trying to live independently, it can be a little difficult to gather the spoons together. So, I appreciate all your support, and I hope that you all learn something of value here today. And I hope you all have a great day.
