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Managing and Preventing Meltdowns

This past Saturday, I was given the opportunity to speak at the Autism Society of East Tennessee’s Autism Educational Conference.

I felt a bit out of place (most of the people there were neurotypical), but that’s okay. My topic that I presented on was the management and prevention of meltdowns, as well as how to better support healthy emotional regulation. Considering how many meltdowns I had preparing for this session, the irony has not been lost on me.

Since I know a lot of people are unable to afford attending the conferences, I figured it would be helpful to post the information on here. I want to make sure the information is as accessible as possible.


Meltdowns are easily one of the most difficult parts of being autistic.

I love being autistic (something a lot of people don’t hear often!), but meltdowns are honestly the worst.

The best way I can personally describe a meltdown is like a Blue Screen of Death crash on a computer. Of course, I am a human being and not a computer – but I think it gets the point across. Others have also compared it to a more intense and painful panic attack.

Meltdown or Tantrum?

A question I have often been asked by parents and caregivers is “how do I tell the difference between a meltdown and a tantrum?”

For someone raising a toddler, that’s a fairly valid question. Neurotypical or autistic, children are going to throw tantrums sometimes. It happens. For this, keep four questions in mind:

  • Does it happen regardless of an audience?
  • Is it goal-driven?
  • Can you ‘reason’ with them to stop?
  • What led up to the event?

In most cases, meltdowns are not goal driven. A meltdown does not occur because the kid wants the chocolate bar in the checkout lane – unless they expected to get it prior or it was promised. And if they do, that may be a sign that something else is going on. I’ll go more into depth with that later. Meltdowns also can occur with or without an audience, because it’s not seeking a goal- it’s a sign of distress.

When a child has a tantrum, ignoring them or giving in are ways that people deal with it. You can bribe or reason with them, whereas someone facing a meltdown has way too much input going in already. They will struggle to process more of the information. Another way to tell is to analyze the situations that led up to the event. Were you in a crowded supermarket and the intercom came on? Did your child get a bad grade on an assignment? Were they bullied on the playground that day? A lot of different factors come into play with a meltdown.

Remember that meltdowns are different for each person. 

Meltdowns can be presented in different ways. Some autistic people have more outward meltdowns, which may look like throwing things, hitting, biting others, etc. I’ve had my share of ducking to avoid objects being thrown, but always remember that it’s not necessarily personal. The individual needs you to be calm, not angry.

For myself personally, I am much more inward with my meltdowns. I tend to exhibit self-injurious behavior such as scratching my skin and other things. Of course, prior to my diagnosis, my providers thought this was simply just self-harm – not a product of meltdowns. After learning I was autistic, I was able to implement things that have helped bring the self-injurious behaviors to a much less severe state. I also tend to cry, rock, or have my head buried in my hands. I remember being very young and telling myself to “hold on” until I was alone. Of course, holding back meltdowns will also make them worse. Typical, really. The more you try to fight the meltdown/ push through, the worse it tends to be. Some autistic people are able to do this, while others are not – and that’s okay. We’re all different! Sometimes though, it’s impossible to do that at all. I have found that trying to hold back a meltdown is also very unhealthy and detrimental to your mental health.

There are several factors that can cause meltdowns.

Meltdowns can be very complex. Sometimes it isn’t necessarily just one factor but a mixture of several. For example, a child who has a meltdown over choosing a marker may not be having the meltdown over just the marker itself. She may have already had a stressful day, might be sick, or even just already overstimulated. While the marker situation alone could trigger a meltdown, many times it’s the “final straw.”

Meltdowns can be caused by:

  • Emotional build-up
  • Sensory Overload
  • Not Enough Processing Time
  • Fatigue or illness
  • Cortisol overload
  • Trauma
  • Change in routine
  • Surprises

I’ve had meltdowns that were triggered by each of these things. It’s important to note that it could also be more than one thing. For example, I had a very particularly awful meltdown my freshman year of college. While I thought it was just because of emotions and sensory issues, it turned out that I also had pneumonia and hadn’t even noticed. I wasn’t even able to communicate that I was sick – I just felt “off” and didn’t know how to describe it. It wasn’t until I went to the doctor that they figured it out.

On a side note, there is also something related called ‘shutdowns.’ When this happens, the individual may be unable to cope with their surroundings and has to “check out.” This can present in derealization/dissociation, becoming unable to speak or move, and feeling so drained that you can’t function. I have these far more than I have meltdowns, and they’re just as difficult to deal with.

When an autistic person has a meltdown, there’s a few things to keep in mind.

First, remember to keep calm. Your goal is to de-escalate and support the person – not agitate and stress them out further. It’s also better for your own coping skills to remain calm in crisis when possible. When I’m in the middle of a meltdown, the absolute last thing that will help me is someone yelling at me.

Another important thing to note is the necessity of self-care. Your mental health is important, just as the individual’s is. Take some time to decompress and relax later – and make sure that the autistic person does too! Meltdowns aren’t fun for anyone, especially the person having them. After a meltdown, I feel incredibly drained and unwell. It takes time to recover from such an emotional and distressing experience. Just as you’d unwind with a nice book or a glass of wine after a rough day at work, the same principle applies.

Make sure that you consider all the different aspects and causes. If it isn’t emotional or sensory, keep in mind that there may very well be a medical issue going on. This is especially true if the individual isn’t able to tell if they’re unwell or if they don’t have access to effective communication tools to describe the problem.

I personally love the H.U.R.T.S. method for narrowing down the medical issue. I learned this particular concept from Clarissa Kripke, MD, FAAFP. I provided a link to the bottom of this page if you want to read a much better worded and in-depth document.

  • Head
    • Migraines, ear infections, vision/hearing changes, sore throat, etc.
  • Urinary Tract Infections
    • Also includes kidney stones, gallstones, or gastrointestinal issues.
  • Reflux
    • Heartburn is common.
  • Thyroid or Traumas
    • Thyroid issues may be occurring. Physical traumas such as a broken arm or sprained ankle could also be the culprit. Psychological trauma is also valid.
  • Seizures
    • Some individuals with ASD will have co-occurring conditions such as Epilepsy.

Behavior is communication – although not necessarily direct communication.

Almost everyone involved in this field has heard the old adage “behavior is communication.” Technically, this is very true. However, keep in mind that sometimes the ‘behaviors’ are reactions that are completely involuntary. React kindly and keep this in mind.

Now for the big issue: what’s the best thing to do when someone has a meltdown?

For this one, I recommend the S.C.A.R.E.D. Method. From what I’ve read, this is attributed to an autistic first responder named Deborah Lipsky.

  • SAFE:
    • Focus first on getting people out of the way or getting the person out of the room. Safety is a priority.
  • CALM:
    • Breathe; this will pass. Use simple instructions and short sentences. The individual may struggle to process information during this time.
  • AFFIRMATIONS:
    • Positive and calming words should be used. You have to de-escalate, not agitate.
  • ROUTINE:
    • If you know of any calming routines or activities that the person deems safe – help guide them to it. Examples include using a weighted blanket or even playing a preferred calming song that they have chosen and asked you to use.
  • EMPATHY:
    • Remember to be kind and empathetic. Work from a trauma-informed perspective.
  • DEVELOP:
    • Make an intervention plan BEFORE the meltdowns happen.

The best way to manage a meltdown is to prevent them from happening or lessening the negative impact on the individual.

Everyone has had one of those bad days, right? Where everything is so stressful that you just have to cry it out?

Similar to a meltdown, you have to have positive coping skills. Things such as stimming, a favorite fidget, coloring, mindfulness, and other activities can be helpful. If you’re going into a more stressful or new situation, make sure the person knows what to expect – whether you use social studies or even Google Maps.

Other ideas include helping the autistic person adapt to a difficult situation. For example, if you have to go grocery shopping (something I despise), ear defenders or headphones and sunglasses might be a good middle ground. If people are judgmental about it – too bad for them. Your kid deserves only good people in their life, and humans that are cruel or not understanding do not deserve the time of day.

Also: always presume competence. Even if your child is completely nonverbal, I’m quite confident that they’re taking in everything. I know someone who did not get the opportunity to use appropriate AAC until they were much older. And when they did – they had a LOT of stories to tell about caregivers and teachers that didn’t presume competence at all.

Autistic people often have difficulties in emotional regulation, whether that be identifying, describing, understanding, separating, or showing emotions. This presents in different ways. It’s also important to note that autistic people are at higher risk for mental illness – especially anxiety, PTSD, and depression. This is often due to a lack of appropriate and quality supports, the denial of autonomy or self-determination, and many other factors.

Furthermore, many autistic people are not lacking empathy – a very common misconception. Myself, I am hyper empathetic to the point where I can’t watch something too dramatic without having an emotional reaction that may be deemed as exaggerated or at inappropriate levels. It also affects my blood pressure, so I have to be careful. Despite the stereotypes though, it’s important to note that people who may have low empathy still have emotions and feelings; all autistic people are valid and important, regardless of empathy levels.

What tools are available?

One of my favorite tools for emotional regulation that I’ve come across is the Five Point Scale.

It’s often used for emotional identification, communication, and regulation. It provides a visual and more tangible way to describe emotions – and can be simplified for younger children and toddlers. I’ve actually attached some that I made at the end of this post, and you’re more than welcome to print them off and use them!

Other things that may come in handy include the use of color code badges or wristbands. These are often used in autistic-run events, such as conferences or conventions. They use Green, Yellow, and Red. I have this explained in more detail in the PowerPoint, and you can also read more about it here on the Autistic Self Advocacy Network’s website.

I hope this information is helpful! Feel free to message me or ask questions!


My presentation and supplemental materials are provided below:

PowerPoint: 

Free Printables:

The following are ones that I created myself!

Resources Used and Further Information:

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Positive Thinking

I’m currently preparing for my session at an Autism conference, and my anxiety levels are through the roof. I’m covering how to best manage/prevent meltdowns, and ironically, I feel close to having one myself.

My last few posts have also been a bit serious, especially with it being Autism Acceptance Month and finals coming up soon. I’ve been busy between assignments, programs, and everything else. The end of the semester is always the hardest for me.

Also: after my presentation, I will post the PowerPoint and printables made – in case anyone needs it.

To make things a little less stressful, I present to you – cat pictures.

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A tabby cat asleep on a cat tree.

 

Is this post an excuse to post cat pictures?

Probably.

Does it make me feel better?
Definitely.

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Leia waiting in her crate after a vet visit.

 

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Leia asleep on the bed.

 

 

 

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When You’re Afraid of Autism Awareness Month

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.

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

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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Conferences, Midterms, and Naps

It’s official: I made it through half a semester!

Luckily for me, that means it’s officially Spring Break. Not that I’m actually on a break; I have things to do. I’m hoping that I can take the week to plan things and such. Our Neurodiversity Club is doing things for Autism Acceptance Month, I’m still ironing out the details with one of the departments for our film screening of Deej at some point, and I’m trying to come up with events for the community center. I’ve gotten in touch with the local law enforcement and emergency services to come in and meet our kids and teens, let them see the trucks and the K-9 dogs, and let them get familiar with each other. That should be taking place in April, if all goes to plan. Luckily, our local department does autism and disability training with all the officers, so I’m thinking it will go okay.

Our Disability Day of Mourning event went somewhat okay. We didn’t have as big of a turnout as hoped; still, we played a slideshow of the victims and read out the names – the most important part of the vigil.

DDoM Paper Chain
A colorful paper chain lying on top of a brown table. Each individual link has a name of a filicide victim written.

Some of our friends also spoke and shared some readings from I Am Not A Burden by Tuttle, ‘Remember‘ by Amy Sequenzia, and ‘On Our Backs We Will Carry Them by Ari Ne’eman.
On a brighter note, it’s been confirmed that I’m officially scheduled to speak at two conferences this year!
I’ll be doing a session at the local Autism Society’s conference later next month, and another at the Southeast Adult Autism Symposium in July. The first will be over tips for handling meltdowns and making transitions easier, and the other will be on executive functioning and independent living. (I’m already working on the PowerPoint for the second one.)

I’ll try to write more as things come up. One of my goals is to write more, so we shall see.

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Disability Day of Mourning

Note: This post discusses the topic of filicide and violence against people with disabilities. Take caution in reading, and be mindful of how it may impact you. Your mental health is always important. 

On March 1st, my college campus will feel a little different.

Usually, March is the month of midterms, spring break, and a slight weather change for the better. You begin to dream of no longer needing that wool coat and scarf; instead, you stare longingly at those shorts you’ve been dying to wear since October rolled around. People begin to see the end of the semester coming near, and it’s exciting.

But not that day.

You see, the first of March is a different day.  It will feel more like shadows, the brisk cold wind still rushing past my face. It’s still winter, a bit darker and cooler than I’d like. Even so, there’s still a tinge of hope every time I step into a sun ray’s path.

March 1st is the Disability Day of Mourning.

Created in 2012 in response to the death of George Hodgins, an autistic man, the Disability Day of Mourning vigil is held each year to commemorate the lives of people with disabilities who have been murdered by family and caregivers. The Autistic Self Advocacy Network tracks cases of filicide, and each year, the names of the dead are read out loud. Just in the last year alone, more than 100 cases have been reported.

Sounds horrific, doesn’t it?

Yet, people will defend the murders as “mercy killings” or “understandable.” They try to justify it as “just a lack of resources” and say “it’s just so hard.”

This is where the problem lies. This is why our children, teens, and adults with disabilities are dying. Parenting and being a caregiver is hard, but that will never justify filicide. They never say these things about typical children’s deaths; why should a child’s disability change that?

Society and our culture views disability as a fate literally worse than death.
Autism is feared so deeply that our society shuns those on the spectrum and grasps at straws to “cure” us – when we are literally begging for supports, accommodations, and our voices to be heard instead. Intellectual disabilities are so stigmatized that people forget the joy and beauty that each person brings to the table. Physical disabilities are seen as difficult to accommodate – but that accommodation is a civil right and deserved.

This stigma, negativity, and fear is exactly why people are dying. People get so convinced that disability is the worst thing to ever happen to someone, and immediately decide that our lives are less because of it. They decide that being a caregiver is just too much, and they choose to kill us because they think we’re the problem.

We’re not the problem. We have never been the problem at all.

As an autistic person with mental and physical disabilities, my life is automatically seen as less in the eyes of others. I already struggle with chronic depression, but the outside world has much more to say. I am painted as a burden by society, a drain on resources. I am seen as weak, weird, and a liability. I am told all the things I will never do, and all the things I shouldn’t be allowed to do. Society tells me that I will not have my own home, have children, and that I will never be able to live independently.

I have been told directly by others that I should not be allowed to live, and that I definitely should never reproduce – lest I continue to ruin the population. I could very easily be one of these statistics. Whether it be my autism, PTSD, brain injuries, or dysautonomia that forces me to use a wheelchair and cane – I am easily classified by society as a burden. Would my murder be considered a “mercy killing?” Some would say yes. At this point, it does not surprise me.

Society is wrong.

My life is not worth less just because I have a disability. I am disabled and I am allowed to take up space in this world just like anyone else.  I am capable of experiencing love, joy, sadness, heartbreak, and the multitude of emotions that make up a life. Even if I live a life that is different, I am allowed to exist.

My community is entitled to the same human rights that everyone else has. We are allowed to exist.

We shouldn’t have to convince the world that we should be allowed to live; yet, here we are. My community holds up a candle, a symbol of remembrance and illumination. We come together, whether in person or online, and we stand in solidarity with one another.

Here I am, a broken record constantly assuring myself and my community, “Yes, I belong. We all do.”

On March 1st, light a candle for those we’ve lost – and those of us who are still here to fight.

To find a local vigil near you, ASAN has provided a list here: http://autisticadvocacy.org/2018/02/2018-day-of-mourning-vigil-sites/