Content note: this is a very emotional post and talks about some distressing things.
I’m in several online autism-centered parent groups.
This is mainly so I can offer support and also learn – as I like learning about resources around to help advise families and friends.
Want to know a secret?
I hate it.
You know how sometimes people warm you to not read the comments?
It’s like that, but worse.
I understand that it’s venting, letting out some sort of pent-up rage into the void.
But – it’s very painful.
I see the posts about young children, and their parents calling them evil.
My blood pressure skyrockets and my chest hurts every time I have to read flyers shared that say “Talk About Curing Autism” or a fundraiser for the dreaded Autism Speaks. I worry as I read about how they use unsafe practices to “cure” the autism. The fad diets, the bleach and chelation, the intensive “quiet hands” ABA torture. A 40 hour work week is rough on most adults; why do it to a child?
I watch as an entire comment thread agrees together that autistic adults belong in group homes, that autistic children will never amount to anything, that autistic children should not be allowed to have an organ donation or that their deaths would “be a mercy.” I see people say that their child’s distress is “such an embarrassment” or that their child would be better off institutionalized and never allowed a voice.
I swallow my stress as I read post after post about how someone “can’t deal with this child anymore” and how “they just want to give them away.” As someone who grew up as a ward of the court, these comments sting too hard for me.
I cry because someone literally says they hate autism, and would rather have a dead child. Straight up posting “I would rather have a dead kid than this” and “I wish my kid was dead.”
I try to keep myself composed, because if I told people how I felt, I would definitely be banned. And even when I speak up politely, I often get shut down.
“You’re not really autistic.”
“You’re too high functioning.”
“You don’t know what it’s like!”
A few fun facts:
I am autistic.
I am not a functioning label.
I know exactly what it’s like, both inside and out.
I get told “you’ve never had a toy thrown at your head.”
I remember that I was given brain injury that has wreaked havoc on my nervous system and cognition. I have had many things thrown at my head, bitten, scratched, punched, and worse. And yet, the worst abuse I have ever received was from neurotypicals. I have no anger nor bitterness toward a child who is struggling to comprehend and tame strong emotions.
I am lectured with “you don’t know what it’s like to worry about your child’s future.”
I remember crying alone hysterically the day my autistic brother went to preschool, because I was scared he would be bullied like I was.
I didn’t fear for me, because I figured I would die before I grew up anyway (my mental health was not the best). Now that I’ve somehow survived, I am terrified.
I’m not sure what happens next. I don’t know where I will be living this time next year. I don’t know how I’m going to keep afloat. And you’ll find that most of us autistics are terrified, too.
I listen and read every comment.
“Autism is a disease. Autism is undignified. Autism is disgusting. We need to fight and destroy autism.”
I replace each instance of Autism with a name, whether it be my own or my loved ones. I would type it out, but I do not want to.
“My child is a disease. My child is undignified. My child is disgusting. We need to fight and destroy my child.”
How cruel does that sound?
I’m so used to being called worthless and broken. Our community hears this constantly in professional and parent circles.
Even in the conference I spoke at in April, I broke down crying as I listened to the more high-profile guests.
To them, we are a burden. We are missing pieces of ourselves and are too broken. We are deficits in society. Byproducts of genetic disease or environmental toxins, things I overheard constantly during the conference. Books on the counter about the “epidemic” and “problem children.”
All around me were puzzle pieces, anger, people all shouting about the horrible autism epidemic.
My meltdown I had when I got home had nothing to do with public speaking.
It had everything to do with the fact that I felt unwanted and unwelcome at an event that was all about my shared neurology. My friends, my brothers, my loved ones, my sweet fiancé – we are told so much that we are broken. We are told we have no empathy or emotion. We are not wanted, not desired, not needed.
And people wonder why autistics have higher rates of trauma and mental illness?
I know autism is hard.
I am in that odd and awkward perspective, where I am the autistic person, love an autistic child, work with autistic people, and am trying to enter the professional word of special education.
I am not a stranger to the “negatives” of autism – not even the slightest. Yet, I don’t see a child with “deficits” or as a “side effect.”
I see a child who needs supports, love, acceptance, and encouragement. All people, regardless of ability, deserve kindness and to be respected as human beings.
But I can’t say that in these groups – and that’s the real shameful disgrace.
Autistic children, teens, adults – all of us are listening.
This past Saturday, I presented at the 2nd Annual Southeast Adult Autism Symposium! It was a very fun experience, and I met lots of interesting people. As always, I try to upload the presentation information online. I know it’s difficult for some people to attend these events, whether it’s due to cost, distance, or other personal reasons. My fiance also recorded the session, and I can upload it if anyone wants it.
Picture of flowers in the background, with the words “Executive Functioning and Independent Living” and “Just Keep Stimming!”
Independent Living
As my presentation was part of the Independent Living track, it is important to note that this post relates mainly to tools to help you or someone you know live independently. When people think of independent living, they often think of financial freedom, living alone, having a job, and other aspects. However, the most significant aspect of independent living is self-determination and autonomy – getting to make your own decisions and choices.
Independent living also has a vital building block that many people do not cover – the concept of interdependence.
There’s a phrase that comes to mind: “No man is an island.” Contrary to what I thought as a kid, this has nothing to do with geographical features. You have to remember that everyone depends on someone else. Even the most neurotypical, able-bodied person you can think of needs other people. For example, very few of us grow our own food, create our own clothes, and build our phones and computers from complete scratch. All of us rely on other people in some way or another.
Understanding this is the first step to true independence – knowing that it’s okay to need supports and assistance. Never feel bad for needing help. That’s simply just how life works, and it’s okay. Know that your accessibility needs are completely valid.
Executive Functioning: A Brief Overview
Have you ever had the feeling of walking into a room and having completely no idea what you’re supposed to do next? It’s remembering that you’ve forgotten, but not knowing what.
Or, have you ever had so many tasks that you get too overwhelmed? A task so daunting you decided to go for a lie down instead?
That’s something many autistic people have every single day.
One of the things that is quite difficult for many autistics and neurodivergent people is something called ‘executive functioning.’
It’s the mental processing involved in making decisions, multi-tasking, organization, and getting started on tasks. It’s not exclusive to autism, though. It happens in people with ADD or ADHD, neurocognitive disorders, and even mental illnesses such as depression and PTSD.
Executive functioning has several different aspects that often overlap together. These include:
– Inhibition
– Shift
– Emotional Control
– Initiation
– Working Memory
– Planning/Organization
– Organization of Materials
– Self-Monitoring
For this post, we’re only focusing on planning and organization.
One of the most significant issues with executive functioning is the assumption that the person is lazy. This is often the case when the person is a teenager or young adult- especially as teens and young adults are often known for the stereotype of being lazy.
However, it can actually be detrimental to accuse the person of laziness. Many times, they already are frustrated with the difficulties of executive functioning. The scolding, in turn, can exacerbate stress on the person and cause greater difficulty in functioning.
Of course, we can be lazy too. It’s okay to be lazy sometimes; relaxing is a perfectly healthy thing to do! That’s an entirely different conversation.
Someone who struggles with executive functioning may have difficulty with organizing tasks. If you give them several instructions at once, they may feel overloaded and overwhelmed. They may even have trouble remembering what you told them. When this happens, they may not be able to do them at all – or only one or two. For myself, I’ve sat in my floor for two hours because I was trying to process my tasks for the day. My brain has to pick each step apart so I can fully grasp it, or else I become overwhelmed significantly.
How to Cope with Executive Functioning
Let’s face it: “adulting” is hard work.
It’s hard to keep track of everything. Doctor appointments, chores, medications – it can get overwhelming really fast. I get stressed out by the smallest details, because there’s simply just so much going on at once and I can’t process it.
When you’re living independently, these things are all very important. However, when you’re autistic or neurodivergent, “adulting” is even more difficult.
Physical and Online Resources
One of the most important things to keep in mind is resources. There are some resources out there for adults with intellectual and developmental disabilities, although sometimes they can be hard to find. I will have a link to all of these at the end of the post.
For physical resources, there are some that are often local-based. For example, there are several Arc chapters across the United States. The Arc is an organization that helps individuals with intellectual and developmental disabilities, as well as their families. They can help connect people to community resources and services that people may otherwise not be aware of. Our local chapter here is quite wonderful.
There is also something called Home and Community-based Services, which is related to the Medicaid waiver. This is intended to help people with disabilities live in the community instead of institutions. Unfortunately, these programs usually have waiting lists. Programs vary by state. Tennessee, for example, has the Employment and Community First CHOICES program. This takes the place of the Medicaid waiver.
As well as this, there are places called Centers for Independent Living. These are not institutions, but are meant to be a community resource to help people live in their community. Another important organization related to this is the National Council for Independent Living.
Another resource is to find social groups in the area. Social supports are important for both your physical and mental well-being. When you have an intellectual or developmental disability, it’s important to establish and maintain friendships and connections. We’re much more likely to struggle with mental health concerns, which often stem from a lack of resources, acceptance, and accessibility.
For online resources, there are a lot of great websites and posts by autistic self-advocates. I’ll list them at the end of this post.
Tips and Tricks for Executive Functioning
For my presentation at the conference, I focused mainly on the practical aspects to help with independent living.
Statistics and numbers are great, but in a conference, I’ve found that people tend to prefer to learn about things that can be implemented or are applicable to related situations.
Most of the following strategies may be things you’re already aware of. Many of them are tools that people tend to take for granted, or don’t realize the importance of. While some may seem quite simplistic or obvious, please keep in mind that some people rely heavily on these things – and that others may have not even considered these as tools to help with executive functioning.
“First, Then” Boards
If you’re more picture-oriented, a “First, Then” board is also very useful. When my brother was first diagnosed, that was often used. We had a really nice binder with lots of different pictures, and it was great. It helped him transition more easily, and it helped prevent frustration a little. I secretly wanted one for myself, to be honest! We used them when I was with my friends in the CDC classroom as well, and they were fantastic.
They are more well-known for younger kids, but sometimes they can be great for very short-term tasks or shifting focus.
A small example of a ‘First, Then’ board. This one is from a Vanderbilt ASD module – which of course, doesn’t seem to show any girls in its examples.
Visual Schedules
For myself, I’ve been in the process of making several visual schedules for my dorm. It might seem a little childish, but it’s really helpful to have a visual prompt and simplistic list of steps to keep me on track in the mornings.
A visual schedule listing each step for getting ready in the morning. I made sure the images were cute – a way to make me feel a bit more cheerful as I checked off each list.
If you’re a visual person, these can be very helpful. You can make them look more mature or “age appropriate” if you need to, but I like my little cartoon images on mine. It looks less clinical and more happy.
These can be found online and in classrooms. You can even make your own and laminate it! Afterwards, you can use a dry erase marker or even velcro if you want. It all depends on what works best for you.
Post-it Notes
In my previous dorm, I had several post-it notes around my room. These were used to remind me of important tasks, as you can see below.
An edited collage of several post-it notes from around my old dorm room. Many cover things such as eating, self-care, and chores that need to be done. Many of these are no longer applicable, such as the Ensure drinks and medication times.
Some of these things are processes I’m actually quite good at, such as looking after my Leia Lyta. This is because cats are mostly self-sufficient, and I tend to prioritize her anyway. Cats don’t let you forget.
Other things are things I sometimes need reminders on – like brushing my hair or taking my meds. When I used these, I was having significant difficulty with remembering to eat.
(Tip: if you or your kids have issues with this sort of thing, nutrition drinks are the way to go. They’re sometimes actually not that bad once you find the right flavor for you.)
If you’re using Post-it Notes, it’s important to make sure you place them in a visible area. Don’t forget to move them around occasionally as well. Your brain will get used to the note, and it may no longer be effective. When the notes begin to be a part of the background, your mind may filter it out.
Medication Organizers
If you take any medications (especially if you have several co-occurring conditions), it’s important to remember to take your medication when living independently.
A colorful medication box, with four compartments for each day.
I am unfortunately not very great at remembering to take my meds. I’ve found that using a medication box and organizer is really helpful. However, it’s important to refill the box on time. I have to be nudged because sometimes I forget, and get a little stressed out over making sure everything is in its correct place.
If you find it to be a stressful task, it’s okay to ask someone to help. Like I said earlier, independence is all about interdependence.
Technology
Many people have a very useful tool already on hand – the smartphone! From apps to pre-installed operating system features, phones can be incredibly useful.
Alarms and Timers
A phone alarms menu and a medication reminder app menu. The medication reminder app is called ‘Round,’ if you’re curious. I’ve yet to find an app I prefer the most. (Edit: Since I last posted this, there have been several medication changes and additions.)
When you use alarms, they can serve as great methods of reminding you to do things. Some also pester you until you do the thing – a feature I’ve found useful with medication apps. I still haven’t found my favorite app to use yet, although Medisafe and Round have proven to be quite helpful.
Make sure you don’t use your favorite song if you worry about getting tired of it. Likewise, make sure that the alarm does not startle you or make you feel anxious. I tend to prefer vibration alarms because I’m hard of hearing. I may not always hear the alarms go off, but I have a Fitbit/medical ID alert wristband that can get my attention by buzzing at me.
Planners and Organization
As for daily planners and organization, I have several methods. My main calendar is through my phone, per the typical college student’s life.
A side-by-side view of my two calendars I used to keep up with classes and appointments. I usually only have to put data in one of them and they sync. However, the one on the left (iStudiez Pro) also has the option to include assignments and due dates.
Phone calendars can be very useful for marking plans immediately when made. You’ll find that the in-built calendars are useful, although there are apps that can do more. These apps should work with accessibility features such as VoiceOver, but not always. It’s important to keep that in mind if you rely on these important features.
Habit Trackers
There are several apps that can help with keeping track of habits and daily tasks.
This is a screenshot from the Habitica app. You can see the list and “stats” bars at the top. Also: my little avatar has a wheelchair like me!
This app is called Habitica. It’s free, and similar to a role-playing game (RPG). I have a lot of friends (both autistic and neurotypical) who love this app, and use it daily. It uses the gaming aspect as a motivator to complete real-life tasks, and is intended to help with establishing and maintaining daily routines.
Pen and Paper Methods
Many people prefer to write down things, especially those who learn best through writing and muscle memory.
Agendas and Planners
A page from my personal planner. At the bottom is a habit tracker as well.
I recommend color-coding the information, as it can help your brain organize and associate things together. Handwriting may not be beneficial or feasible for some people, and that’s okay! Remember, always do what works for you.
Some people even prefer wall calendars or desk ones. I use different ones with mostly the same information. It helps me remember, but it also gives me a rough idea of how my day is going to go. With this information, I’m much less likely to have a meltdown or get too stressed during the day.
Worksheets and Lists
A worksheet organizer to help keep track of assignments.
Things such as worksheets and executive functioning handouts are also incredibly useful. I went over some of them when I did the executive functioning workshop a while back. The best part is that you can use them to work out complex situations – or simply just to get a better understanding on how to keep your brain motivated and in tune with your daily activities.
There are several places where you can find these, from exploring printables on Pinterest to even speech therapists. The one posted above actually came from my speech therapist at the time.
I have a few resources and worksheets on file, but I’m not sure if I’m allowed to post them. f you want any of these resources, just send me a message and let me know! I can usually find printable things to help.
What if I have no motivation?
Writing, planning, and organizing is great – but it doesn’t necessarily motivate you to do the things. Sometimes, it’s hard to gather the motivation or energy for tasks that many people consider simple. This is especially true for those of us who have depression, chronic illnesses, and other co-occuring conditions.
If you’re absolutely too drained to do anything, pace yourself. Break things into steps, and take breaks if needed. You can set a timer to have a 15 minute break, and then go back to the task. And if you’re just not able to do the task, it is okay to take a step back. Autistics can go through burnout and are more likely to have meltdowns when they push themselves too far – or try to “pass” as neurotypical for too long.
If you’re noticing that your executive functioning skills seem to be less controlled, it could be a sign that you’re headed for burnout or a meltdown. I talked about meltdowns in a previous post, as those can be hard to deal with. If you realize this is happening, remember that it’s your body and brain’s way of telling you to slow down and breathe. Us autistics are much more likely to struggle with mental illness and other serious situations, much of this due to a lack of supports, accommodations, and acceptance.
Again, there is no shame in needing extra supports. If you’re struggling, it’s okay to take a break, request that extension, or ask someone for help. Like I said, everyone depends on someone else. It’s okay to need support.
Resources and more information on executive functioning:
The other day, someone said to me “it’s so inspiring that you’re overcoming your autism!”
Not surprisingly, I hear this one a lot.
“Overcoming” autism.
“Despite” the autism.
“Fighting” autism.
“Don’t forget; you’re a person with autism.”
It’s something that always throws me off, really. It’s as if autism is supposed to be a roommate – you know, the one who eats all your Goldfish crackers and leaves the fridge door open. Or the cat in your home that won’t stop stealing your toaster strudel (thanks, Leia).
When someone says this, they usually think they’re complimenting me or giving praise – which I understand and appreciate. I can’t deny that it’s hard sometimes to do things.
But – let me make one thing clear.
I’m not “overcoming” autism.
I’m not anything “despite” the autism.
I’m not “fighting” autism.
I am autistic.
I don’t need to overcome autism, because autism itself isn’t something to overcome. Allow me to explain.
This June, I attended the Autism Campus Inclusion program that was led by the Autistic Self-Advocacy Network.
I spent an entire week immersed in autistic space, and it was life-changing. I was in a room surrounded by only autistic people across the spectrum. I saw no tragedies – only wonderful friends who embraced and loved being autistic.
In turn, I remembered that I love being autistic too.
You see, autism isn’t a roommate.
Sure, autism is also meltdowns. It’s sensory overload, migraines, occasionally insomnia. Autism is the sometimes reaching milestones later than you’d like to admit.
But no matter your neurology, life presents itself with challenges. Autism is the same.
Autism, like life, also presents with joys and gifts – and not necessarily in a savant way.
Autism is the intertwined web that connects me with a beautiful and loving community – people who are like me. It’s special interests, passions, and getting lost in your own senses. It’s non-compliance, non-conformity, celebrating different!
Autism isn’t some otherworldly entity; it’s how I’m wired. I’m neurodivergent – my brain is a bit different from the status quo. I’m not broken, not less. I’m just me!
Before I learned I was autistic, my mental health and depression was at its absolute lowest point. I knew I was “weird” and couldn’t do things everyone else could do, but I (and others) attributed it to laziness – contributing to a vicious depressive cycle.
Learning I was autistic was not a tragic moment; it was liberating. It was also a process, slowly emerging with more determination and acceptance for myself. I’m still in that process, but I treasure this part of me – the reason I am myself.
When I embraced the fact that I’m autistic, things started looking up.
I stopped thinking of myself as a burden. I became less suicidal, a little less depressive. I accepted that I am just me, and that’s okay.
I had a name for my difference, a community to belong in.
I tried “fighting” autism all the time as a child. I tried to do things “despite” the autism. I tried “overcoming” the autism. I didn’t have the word for it, but I hated this odd part of my personality and brain who couldn’t seem to grasp things that everyone else could. I thought I was just bad at life – because everyone around me said so.
When I’m learning to stop fighting myself, that’s where the healing begins.
You can’t compare yourself to other people’s progress, especially when you’re autistic. And if your kid is autistic, you can’t compare their progress to others.
We develop in our own pace, in our own way. Remember, I’m not able to live alone, drive, or do a lot of other things that most college kids do. I can barely even cook unless I have someone who is walking me through it and there with me. Maybe one day, I’ll get there.
I stopped thinking, “I wish I was able to be as self-sufficient as them.”
When I accepted the fact that autism is just how my brain is wired, I asked myself a different question.
“What can I already do? And what things am I able to learn right now?”
And that’s the key: autism isn’t a tragedy – it’s a difference. It’s okay if I don’t have a life that is identical to my peers. That’s not my path; I make my own, just as everyone else does.
My existence isn’t a tragedy. I’m learning that I’m not a burden, as I felt for so many years. I love this part of me. While the world is not quite accessible for me yet, I am learning that loving myself (including autism) is a radical and rebellious act.
Autism is just one of the many components of me, and why should I fight a part of myself? Why put myself under pressure just to conform to neurotypical standards?
I’d much rather just be me – my authentic, autistic self.
Content note: this post may be upsetting for some, especially for my fellow autistics who also are anxious about April.
And of course, April is ‘Autism Awareness Month.’
I’m already cringing inside. The urge to burrow underneath my weighted blanket until May is honestly very tempting.
You might’ve gathered it from my last post, but I suppose my fear deserves its own post.
April is a very anxiety-inducing month for us, and quite justifiably so.
Aside from the frustrating puzzle pieces and blue light bulbs, April consists of a lot more issues. From the crusades for a cure to the narrative that we’re a burden, it’s a hard month for us. Ironically, when we speak up during April, we are told to shut up or that our feelings don’t matter.
I’ve found that the hardest aspect of it for me personally is the constant reminder that autistic people are seen as burdens. From parent memoirs to Twitter tantrums telling everyone how hard it is, it’s actually really depressing.
Take for example a video I saw a while back, saying how they realized the last time that their child was ever going to be “okay.” It broke my heart.
There is no ‘last time’ your kid is going to be okay. Your kid, simply put, is going to be okay – if you give them that unconditional love, acceptance, and support. Autism hasn’t stolen your child. Your child is a unique individual who is deeply loved and wanted.
This video continues to contribute to the thinking that we are burdens, tragedies, a fate worse than death. And once again, that belief is why we have a Disability Day of Mourning for victims of filicide.
I’m beyond done with this narrative that we are so difficult to deal with, or that our parents don’t want us or they even want to kill us. I’m done with people telling me I’m overreacting or too emotional (the humor being that these are the same people that tell me autistics have no emotions).
Personally?
How do you think these videos make me feel, when the mother talks about her kid being a burden?
I grew up as a child waiting and literally hoping for my death, because I knew I was different and it was my fault that no one wanted me. I was convinced that I was too much to deal with and that I was a burden. I was in therapy by the time I was around 5 years old – because younger me was depressed. A five year old should not be suicidal, and I was too afraid to tell anyone that I was.
I spent my entire life thinking that I was a burden to everyone around me because of me being different, and that everyone would be better off if I was dead. I remember being seven years old and contemplating the best way to accomplish it – in ways that I wouldn’t dare to recount on this blog.
And you know what?
I’m not going to sit here at the age of 21 and listen to someone imply that I was a burden. I can’t spend all month listening to people constantly talk about us in a way that brings me right back to elementary, middle, and even high school itself.
And if I internalized this stuff (even before my diagnosis), I know there are children out there who have internalized it, too.
Thankfully, I’m not that severely depressed and scared 5 year old little girl anymore.
I am an autistic disabled woman who will be a force to be reckoned with, and I will FIGHT to protect disabled kids from being told it’s their fault and that they’re just a burden. I will do everything in my power to protect other autistic children from harm.
Our kids are internalizing this. This autism awareness needs to shift away from the negativity and fear.
We don’t need simply just awareness anymore.
We need kindness, and understanding. We need accessibility and accommodation.
Most of all, we need acceptance – that we’re not broken, weird, and unworthy to be loved.
Right now, the only message that we hear throughout all of April and its blue lights is that our existence is tragic – and that being alive is a burden to everyone around us. So many times I have told other autistic kids I was on the spectrum, just to hear them gasp in surprise – because they said they didn’t think autistics were able to do “cool things” like own a pet or have a boyfriend. They’ve been taught for so long that they are inferior, when they have so many strengths.
And that’s why I choose Autism Acceptance Month instead. My fear of April is nowhere near as strong as my fear of other autistics feeling inadequate and unloved.
I imagined I’d make an eventual post on my disdain for Autism Speaks eventually.
While all the chants of “Light it up blue” and puzzle pieces surround us as April approaches, I’m already covering my ears.
Surely by now, people are aware of the horrid things Autism Speaks is responsible for. Right?
…apparently not.
If I see another blue puzzle piece, I will scream.
People have made cases against Autism Speaks over and over and over again. It’s fairly well-known that they’re a terrible “charity” at this point. Even a lot of the families that I have worked with locally have expressed how much they detest the organization – especially regarding a lack of supports and how the organization has added to stigma.
This organization is one of the reasons I never got diagnosed as a kid – because “autism only affects young boys. This website says so.”
This organization is one of the reasons people think we are tragedies and burdens. The fear and stigma they push is one of the reasons people tell me I should never reproduce or that I shouldn’t even exist. They pushed out the false narrative that we are a fate worse than death. They say we ruin lives, marriages, family outings.
This organization is one of the reasons why the world wants to cure us – to find a prenatal test to literally stop future autistic people from existing.
This organization is one of the leading organizations in the US, yet there’s so little input from actual Autistic people. It’s run by CEOs and business leaders more than anything else.
Autism Speaks doesn’t speak for me. It doesn’t speak for my fiance, my brothers, or my friends.
We can speak for ourselves, if you would just listen.
We are begging for people to hear us, listen to our stories as autistic people. Whether through voice, text, signing, or augmentative communication – we are speaking.
So, no – I will not be lighting it up blue. I won’t wear a hint of blue, and they won’t receive a cent from me.
I will go Red Instead.
I’ll ‘Tone It Down’ Taupe.
I’ll do anything except light it up blue this April.
As I type this, there is a large gathering of people assembled outside in D.C.
You may have not heard, but the disability rights’ organization ADAPT has been fighting relentlessly for the FDA to ban the torture on people with disabilities.
The Judge Rotenberg Center, in the middle of it all, is notorious for its usage of electric shocks on autistics. They claim it’s for “behavior modification,” a blanket statement that lets them abuse people as they please. The regulations against them were written two YEARS ago.
FDA Director Scott Gottlieb will most likely never read this.
But if he did, I have this to say:
Listen.
There are autistic people and people with disabilities being literally tortured. These aren’t just little shocks of punishments (which is still wrong) – this is torturing disabled people simply because it can be done. They can’t stand up, leave a coat on, or exercise autonomy without the fear of the shocks. Not only this, but the victims are in so much pain from the inflicted abuse. This isn’t just about politics; this is a human rights violation.
You have the ability to stop this. You can end the pain, protect others from violence, and prevent the torture of future victims.
Dr. Gottlieb, you have a moral obligation as a M.D. to protect patients and their well-being. Release the regs, ban the devices, and stop the shock.
If you want to learn more about ADAPT’s efforts to fight against this violence, you can go to their website here: http://adapt.org/JRC
To the parents of kids with disabilities:
Take it easy.
Take a breath.
Be gentle on yourselves.
More importantly, be gentle on your kiddos.
Parenting is difficult, no matter how typical your child is (or isn’t).
It’s tough, especially when you have to worry about things that other parents don’t. Those late nights where no one can sleep, stressing over IEP meetings, the seven cups of coffee just to survive until noon, all the doctor appointments… it can feel like too much.
When you’re surrounded by so much negativity, it’s so easy to become overwhelmed and distressed. The world will list out all the things your kid will never do, and all the limitations that come with it. You’re hearing from every angle that disability is a horrid experience and people telling you how much less their lives are worth. You become convinced that your kid won’t ever have a normal life, and you have so many fears of what the future is going to hold. I feared this for my brothers so much. I fear it for myself.
Take a breath.
Go easy.
Listen for a moment.
Let me introduce you to my community.
As an autistic adult who has several co-occuring disabilities, the disability community is a lifeline for me.
I know of some really great people in my community who do amazing things – with their disability, not in spite of it.
I can name several nonverbal autistic people who blog and educate. I know some people from online support groups that are in group homes or under guardianship, because they can’t live alone safely. They’re the people who are often considered “most like your child” or “low functioning,” yet they all prove over and over that they are not machines you can classify. They are human beings with their own values, opinions, and autonomy- and deserve to be treated with respect. All of us autistics do.
Some of them have published books. Some sing. A few knit, paint, or do other types of art. Many are kind and are the first to offer sympathy in hard times. All share their stories; each are unique and beautiful in their own right. They’ve made marvelous strides in positivity and accessibility, by pushing for acceptance, understanding, and respect.
I can tell you of people with physical and mental disabilities who are amazing people. Comedians, lawyers, activists, teachers… the list goes on. I know people with feeding tubes who run businesses, people with diabetes who make some of the best nurses out there. I know fantastic people who rely on screen readers and get things done, graduating with honors. I can tell you about my college dorm Resident Advisor who was Deaf, and always facilitated the *best* floor meetings. I can tell you of people with schizophrenia who are the sweetest.
I know children fighting against conditions that are deadly and bleak, and the adults that those children become – brave, insightful, and possess the best humor. I know of people with Down syndrome and intellectual disabilities that have addressed world governments and society’s stigma. I know people with cerebral palsy who are brilliant writers, witty souls, and wonderful friends. I know people with POTS who can make the absolute best cheesecake and desserts.
People with disabilities can still live wonderful and happy lives.
Sometimes, you don’t even know they have a disability; it’s okay to be disabled. Disability is natural.
We don’t have to be famous or savants to be full of worth and loved. We don’t have to work high paying jobs or get a PhD in order for our voices to be heard, either. Your child’s worth is not determined by how much money they can make or how well they can pass. Striving for “normality” or passing as “normal” isn’t the goal for us. We know we’re not part of the ‘typical’ crowd – and that’s okay.
Don’t mourn for us. Celebrate and stand with us instead. We don’t want pity; we need acceptance and accessibility.
Right now, the world seems like a scary place. Your kid might not be a ‘savant’ or amazingly talented at one or two skills. They might have difficulty with certain things that you don’t think they’ll ever be able to do – and that does happen sometimes. But not always.
One day though, your kid will grow up. Autistic kids tend to become autistic adults, a fact that you know often goes unnoticed. You may be terrified for their future, and that’s understandable. You may worry about future employment, future family life, what will happen to them.
That’s okay.
Take a breath.
Meet up with a therapist. Join a group that celebrates the positives, not just dwells on the negatives. Don’t fall into that trap of despair and negativity. Society tells us enough that we’re burdens; trust me, the last thing your kid needs is to hear it from you too. Your child is precious and loved, and they need you to be their safety net who will love them unconditionally.
Look after your mental health; that’s something all parents need to do, not just when you have a child with a disability. If you’re struggling, reach out. There’s no shame in asking for help. It’s better for you – and for your child. Your kid needs you, and they need safety and stability.
Let your kid take a breath.
They’re kids. Take them to play dates with other children. Find peer support groups. Help them find ways to adapt to a world that might not be accessible enough for them.
Let them play, laugh, and make mistakes. Let them be themselves. They’ll grow in their own way, at their own pace.
Advocate for your kid, love them unconditionally, and help them establish self-determination – even if at first it’s just choosing which clothes they want to wear that day.
And always, always presume competence. Your child will always understand more than you think.
And finally, take one more deep breath.
It’s getting better.
The future is slowly getting brighter, thanks to the people with disabilities and allies who are breaking down barriers every single day. From the ADA to the IDEA and accessibility laws – the disability community is pushing through and tearing down the walls that have kept them out.
Your child is in good company.
And know that you’re not fighting alone. We’re on the front lines too, for both us and people with disabilities who will come after us.
Just like you, we’re not giving up any time soon either.
