autism – Just Keep Stimming!

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.

Our kids deserve better.

Our teens deserve better.

Our adults deserve better.

All of us autistics deserve better.

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Autism Speaks: We’re not listening to you.

March 30, 2018April 25, 2018 Courtney

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.

Whether it’s because of their poor charity rating, or their support of the Judge Rotenberg Center (a place that literally tortures autistics and has been denounced by the United Nations), their horrifically terrible financial nonsense, or even their direct obvious hatred of autism and autistic people – they’re overall just a terrible organization. (For the record, I’ll put up a page that has all these resources listed at some point).

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.

A lot of us even consider Autism Speaks to be a hate group.

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.

disability rights

#StopTheShock

March 22, 2018March 22, 2018 Courtney

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.

The UN declared it to be torture.

The FDA has already proposed to ban it.

Those who have been subjected to the torture have described it as “being underground in hell” and a punishment “for being disabled.”

Autistic activists have fought against it.

They have cataloged and put together information.

Most of all, they speak up.

The victims speak out.

And yet, the regulations haven’t been passed.

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

Likewise, if you want to donate to help support the protesters, you can help here: https://www.gofundme.com/stoptheshock

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An Open Letter to Parents and Caregivers

January 19, 2018February 2, 2018 Courtney

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 brother 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.

(Reminder of my intense loathing of functioning labels here).

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 really great 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, ans always facilitated the *best* floor meetings. I can tell you of people with schizophrenia who are the sweetest and very clever. 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 that have addressed governments and society’s stigma. I know people with cerebral palsy who are amazing writers 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 playdates 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 a 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.

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The Case for Identity-first

October 16, 2017February 11, 2018 Courtney

[Note: this post is specifically in regard to the autism community. Many other disabilities still prefer person-first. Remember that some people on the spectrum may actually prefer person-first, and it’s always nice to ask. However, general consensus in the autism community is identity-first and is the default.]

“You are required to use person-first in this class. Otherwise, it will affect your grade.”

I am autistic, not a person with autism.

I don’t “live with” or “suffer from” autism.

Autism isn’t a roommate that eats all the leftovers from my fridge, or a cursed plague rained down upon me from the sky. It’s not a death sentence, a condemnation to a life of loneliness and disastrous consequences.

The only thing I’m “suffering from” is the lack of acceptance and respect.

Autistic isn’t a bad word.

It’s an operating system, a lens from which I experience the world around me. It’s how I enjoy each moment, embracing my own existence in a way that many others do not. It’s not a disease, no matter what anyone says.

Neurodiversity is necessary in this world, and autistic people are not less for being themselves. All of us have value – the happy flappers, those who use AAC, those of us who can hardly remember to feed ourselves half the time (shout out to my schedule chart and phone reminders). Our lives might look a little different than yours, but that doesn’t mean it’s any less meaningful. Being autistic means I can be lost in the same musical pattern for hours. It means feeling joy so intensely that all I can do is flap my hands because the excitement over seeing a butterfly is just far too much to contain inside.

Sure, being autistic means shirt tags that feel like cacti pricks. It means intense fluorescent lighting, a rush of voices in the room that leaves your head swimming. The constant desire to know where my limbs are for grounding, the need for a human guidebook. It means feeling like an alien in a world that isn’t quite suited for my functioning needs. It means that I’m not really supposed to live on my own, that friends and others check on me regularly to make sure that I’m eating and looking after myself.

That doesn’t make me any less. Instead, it makes up my existence. Living in itself is full of positives and negatives; being autistic is the same.

We exist in our own way, and we deserve to exist.

If you need person-first language to remind you that I am a living, breathing human-being, we have an issue. By enforcing the use of person-first, you immediately make the assumption that my disability makes me less – and something that you have to separate me from in order to have any worth in your eyes. You imply that I am broken, but you’ll try to make up for it by calling me a person first. At the same time, you completely contradict my entire identity and tell me that my voice does not matter.

Working with children with disabilities in the future, my kids will not learn this.

My future kids are going to be loved. They’re going to learn that their disabilities make them unique, a beautiful boost to the natural diversity of humanity. They will learn that they are full of value – not despite their disabilities – but with the inclusion of them. I will teach them that their differences are needed in the world. In my home, office, or wherever I work some day, they will never need to feel ashamed of their existence.

In the community center I volunteer in, I take the same stance. Every single autistic child that enters that building is a precious soul who needs to be cared for and shown how important they truly are. The same applies for teens and adults, too. They are facing obstacles at every point of their lives, and we are all surviving in a world that doesn’t really take us into consideration.

In the meantime, I still have things to do.

It would appear that my opinion as a disabled person is not always valued – especially in this area of study. It’s ironic how something so nice-sounding is actually incredibly dehumanizing. I have to be honest, the requirement made me feel medicalized and as if my community doesn’t actually matter.

It makes me feel like only the “professionals” get a say, instead of the people I am meant to serve in the future. I’m struggling through college for a reason: to help future disabled children and adults to take pride in who they are and love themselves. Part of that requires to respect their community’s wishes and their disabilities. If we teach our children that they have to be separated from their disability, doesn’t that further the stigmatization? Being a good advocate requires nurturing our kids, not to make them feel negatively about their existence.

It made me feel humiliated when the class was asked to explain why “an autistic person” is obviously wrong – immediately after I had mustered up the courage to speak up and say we prefer that. I cried after I left, because I felt disrespected and my experience as being a part of the autistic community didn’t count. It was as if my autistic voice didn’t matter, and conveyed the constant, overwhelming societal routine of ‘shut up, we know what’s best for you.’ It reminded me of all the times I was told I was broken and the world doesn’t think my words have any value. Of course, the professor meant well – person-first has been pushed on people for years.

I sent the professor several links to studies, articles, and stances to back up my feelings. The next class, he actually took the time to explain to the class how there is a movement for using identity-first. The fact that he listened absolutely astonished me, and he’s been a fantastic professor all semester.

Still, we have a long way to go.

Most people are rarely as understanding as my professor was.

We fight so hard to be accepted and to be able to exist in the world. When autistics speak, few actually seem to listen.

If my voice isn’t good enough, maybe some of the following voices are:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5545113/ : ‘The use of person-first language in scholarly writing may accentuate stigma’

https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/ : ‘Why Person-First Language Doesn’t Always Put the Person First’

https://autismwomensnetwork.org/failings-person-first-language/ – ‘The Failings of Person First Language’

http://www.autism.org.uk/about/what-is/describing.aspx – A link that describes studies and information.

https://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/ : ‘The Logical Fallacy of Person-First Language’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519177/ – ‘Person-first language: Noble intent but to what effect?’

http://aspitude.blogspot.com/2009/03/autism-first-language.html – ‘Autism-first Language’

http://doodlebeth.com/identity-first-language/ – A very informative comic

https://twitter.com/doodle_beth/status/899553495292026880 – informal Twitter poll that may be of interest.

https://www.eurekalert.org/pub_releases/2017-08/osu-sad082817.php#.WaSLL_syUzg.facebook – Disability pride and its effect on self-esteem.

http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/identity-first-language/ – Identity-first

As always, just keep stimming.
Especially when they tell us not to.

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Explaining Autism: With Cats

September 28, 2017October 2, 2017 Courtney

Most of us have heard the saying “All cats are autistic.”

Usually it’s meant as a joke, but there is a hint of truth to it. I see a lot of behaviors in my cat that I recognize in myself. In explaining what autism is, I’ve found referencing the difference between cats and dogs to be a way of highlighting the statement of “Different, not less.”
Of course, the usual disclaimer applies: autistic people are not animals. We’re human beings. That really should go without saying, but life experiences have told me that some people need reminders in regards to our humanity.

First, meet Leia Lyta:

A tabby cat with green eyes sits on a purple rug. She’s holding a red catnip toy.

Leia Lyta is my emotional support animal here at the university. I have PTSD with dissociative/derealization episodes, chronic depression, and a lot of other conditions in addition to my autism. Her purpose is to help keep me stable and comforted. She also gives me routine; I have to feed her, clean the litter box, brush, etc.

Anyway, she’s going to help me explain autism. No, seriously. Stay with me here. It’ll make sense.

What is Autism?

Autism is classified as a developmental disorder, a neurological variation. 1 out of 68 children are expected to be diagnosed with autism. The predominant theory is that it is caused by genetics (considering both of my brothers are also on the spectrum, I quite agree).
People on the autism spectrum are all quite different, but there are some similar characteristics that we all share. This is where Leia Lyta comes in.

Sensory

One of the most significant traits of autism is a different experience in terms of sensory input.

We are often sensitive to light, sounds, touch, and other things. If we are startled or overwhelmed, we will react accordingly. This could mean fight, flight, and other biological responses to distress.

img_7292-1 — My cat hiding in a paper bag with her tail poking out. She was startled by our neighbors’ music.

Sometimes different things can help with sensory regulation: weighted blankets, fidgets, and other things of this nature. Self-stimulated behaviors are what we call “stimming.”

Leia loves to snuggle on top of my purple weighted blanket.

Stimming is just one way that we relax when we’re overwhelmed. We also do it when we’re happy, too!

dc1ab2a6-d49e-4589-ac81-04c53bf0060a-12252-000002e7f03efc53 — Gif of Leia kneading because she’s happy. The caption says “Making biscuits”

Autistic people love to stim, especially with stim toys and fidgets. They help us focus and regulate our senses.

Funnily enough, Leia also enjoys fidgets herself – but mostly just because she’s curious.

2237ab6a-4a9e-43ac-a7b5-890e301248a4-12252-000002e6f0df5795 — Gif of Leia playing with my fidget spinner.

One of the negatives of sensory differences is what we call meltdowns – or as I call them, the absolute Worst Thing Ever. They’re not enjoyable for us or those around us. I know when I have them, afterwards I feel as if I have the flu, hit by a truck, and ran a 5k all in one. I don’t have them as much as I used to since I’ve figured out how to cope a bit better, but when I do have them – it’s not so fun. They’re very scary for me, and sometimes even a little bit messy.

The best way to stop meltdowns is to help prevent it altogether. Being attentive to the autistic person’s needs is the best way. Are they struggling with transitions? Use visual schedules, timers, and other tools to help break it down to make it easier. Is it communication? Try writing, sign language, AAC, or even the Picture Exchange Communication System (at least in the beginning; I’d recommend transitioning from PECS to AAC as they get older). Sensory issues? Be aware of what their triggers are. If it’s bright lights, try dimming them or give the person sunglasses. For noises, try noise cancelling headphones, ear plugs, or give them earbuds to listen to music instead. Have a quiet place that they can retreat to when it gets to be too much.

This was a couple of days after I’d first rescued my kitty. A very, very messy crate – as Leia panicked when alone, and kicked litter everywhere. I had to give her a bath after this. (Worst idea.)

Repetition, Repetition…

We love routine and repetition – a lot. Echolalia, special interests, daily routines – they’re all typical for us. Several aspects of our lives can be very repetitive. While many may consider this a negative, it gives us a sense of control and comfort. In a world full of surprises, our brains need this stability.

A perfect example would be ‘special interests’ and fixations. We will think about, play, or watch the same things over and over and over. You might find it a bit odd, but we find it strange when people don’t have them!

774fddc1-5418-4e22-bfb1-bc01bedba510-2629-0000009710ad9477 — Gif of Leia playing with her favorite toy – a round ‘turbo scratcher’ that she will attack for hours.

Of course, you’ll find that a lot of us love tablets, computers, and television. For some, this is a special interest in itself. A favorite television show, Minecraft, or a YouTube channel – these are all things you’ll probably see some autistic people drawn to.

Leia is staring at an iPad and watching cartoon fish swim around.

This is also why you’ll find a lot of autistics love science-fiction, fantasy, or other fictional things.

She enjoys watching Star Trek, especially The Next Generation and Voyager.

We also may like the same food, and might eat it every day. This isn’t uncommon, although perhaps slightly unhealthy (such as when the only thing I ate for months was ravioli). It could be due to the texture, the steps involved in preparing it, or just simply that we love it.

Moon Pies may not be Leia’s favorite food (she’s not allowed), but she will make a persistent attempt. Very similar to me when I see pizza rolls.

Socializing

Ah, yes. The ‘fun’ part that everyone thinks of.
Typically, our social skills aren’t the best. Some of us are good at ‘masking,’ where we can kinda fake it (I am one of these people, until I hit burnout).

Sometimes our social ‘battery’ is just low and we’re not too interested. Playing and hanging out with others is quite draining! I have to pick and choose how much I can handle.

Leia also likes to rest after socializing. In this photo, she’s snuggled with a teddy bear and hiding under a blanket.

Other times, we really do want to interact – but it’s just really difficult to understand social nuances and procedures.

A common thing seen in autistic kids and teens is a concept called ‘parallel play.’ This is when we play next to someone; we don’t always communicate with the other person, but it’s still a form of socialization. Sometimes when we’re a little stressed out, it can be good to just sit with other people and do our own thing.

Leia sitting next to another kitty at my friend’s house. They didn’t interact much that day, other than when Leia started grooming her.

Eye contact is a big issue for a lot of us. For myself, it’s almost painful and definitely uncomfortable. I got away with it as a kid because I would read people’s lips (one of the perks of being hard of hearing). Sometimes we can focus on the conversation and the person much more when we’re not forced to make eye contact.

Cats aren’t always too fond of eye contact either. Leia is a little distressed at seeing herself in the mirror.

People often think we’re stand-offish because we may not express things the same. We may not always enjoy hugs or like to be touched. Some of us don’t communicate verbally, or we may be a bit ‘awkward.’

Rest assured, we’re just as lovable as anyone else.

We just have our own ways of expressing affection – just as cats and dogs do! We might not do things like neurotypicals, but that doesn’t mean we’re any less valuable or worthy to love and be loved.

Our brains just work a bit different than other people’s, and that’s okay.

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Executive Functioning?

September 16, 2017September 17, 2017 Courtney

Tools and Strategies

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 ADHD, cognitive impairments, and even mental illnesses such as chronic depression.
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- especially as teenagers are often known for their laziness! 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 another topic altogether.

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 have 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.

Visuals and Schedules

I actually have several post-it notes around my room to remind me of important tasks, as you can see below.

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 need reminders on – like brushing my hair or taking my meds. Lately, I’ve had a bit of an issue of remembering food. My body isn’t really registering it as much as it used to, which is probably not a good thing. I’m not the only person who has trouble with that, though. It’s nice not being alone, at least. Because of that, I keep Ensure drinks on hand to try and keep my nutrition stable.
(Tip: if you or your kids have issues with this sort of thing, nutrition drinks are the way to go. They’re actually not that bad once you find the right flavor for you.)

If you’re more picture-oriented, a “First, Then” board or visual schedules are also very useful. When my brother was first diagnosed, that was often used in the household. 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 more. I secretly wanted one for myself, to be honest! We used them when I volunteered in the CDC classroom as well, and they were fantastic.

For myself, I’m in the process of making several visual schedules for my dorm. I’ve got one for my morning routine, and hoping to finish making the rest soon! 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. It helps me live a more independent life, which is actually something that I have trouble with.

Part 2 — 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.

Technology

Another big help for me these days is technology. Phone alarms and medical apps are a lifesaver, and serve as good reminders. I’m considering getting an app for visual schedules for myself too, but all the nice ones seem to cost a bit.

The alarms go off at specific times. Some are reminders for medication, while others are for eating. I use the medication app so that I can remember whether or not I’ve been taking them correctly during the past month.

Of course, even a medication/pill box can be useful – especially if you forget easily. Sometimes even a chart can come in handy!

20642326_1395902260526049_1131747078_o — A poor quality photo of my medicine box. These are just the meds I can put in there. I may be upgrading it soon, actually.

There is also a daily habit app called ‘Habitica‘ that can be quite useful! I don’t use it anymore because they changed the format (did I mention my frustration with change?), but it’s still a good tool to look into!

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.

Many people prefer to go “old-school” and make lists. Some find it easier to write in an agenda or personal calendar. It’s all a matter of preference, honestly. I find that writing things out also helps, as having a concise monthly view can make scheduling a bit easier. The only downside is how overwhelming all the information can be.

21706185_1433993200050288_1449266315_o — My “old school” agenda that I use to keep track of all my events and appointments. Bonus: color coded!

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.

21767096_1433997870049821_1135968584_o — My wall calendar! It’s somewhat incomplete, as I don’t always remember to write everything on it. Even so, it’s a helpful tool for me.

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.
If you want any of these resources, just send me a message and let me know! I can usually find printable things to help. I’d post them here, but I don’t know if I’d get in trouble for copyright issues. Let me know and I’ll do what I can to help you! I also have located slideshow presentations with more in-depth information included if needed.

And as always, just keep stimming!

Tag: autism

When You’re Afraid of Autism Awareness Month

Autism Speaks: We’re not listening to you.

#StopTheShock

An Open Letter to Parents and Caregivers

The Case for Identity-first

I am autistic, not a person with autism.

Autistic isn’t a bad word.

Working with children with disabilities in the future, my kids will not learn this.

Still, we have a long way to go.

Explaining Autism: With Cats

Sensory

Repetition, Repetition…

Socializing

Executive Functioning?

Visuals and Schedules

Technology

Planners and Organization

June 2018
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