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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.

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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!

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My presentation and supplemental materials are provided below:

PowerPoint: 

• Managing and Preventing Meltdowns
  (Please don’t use this in a presentation without my permission. Thanks!)

Free Printables:

• Minecraft 5 Point Scale – this one is courtesy of Jacobs Family Blog.
• Behind the ‘Misbehaviors’ – I’m still looking for the original behind this one.
• Emotions Wheel

The following are ones that I created myself!

• Emotions Thermometer Printable
• PECS Emotion Chart
• Emotions Chart Block
• Emotions Chart Extra

Resources Used and Further Information:

• Understanding Autism, Aggression and Self-Injury: Medical Approaches and Best Support Practices
• 5 Point Scale
• ASAN: Color Communication Badges
• ASAN: Autism and Safety Toolkit
• Judy Endow, MSW, LCSW

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.

 

Is this post an excuse to post cat pictures?

Probably.

Does it make me feel better?
Definitely.

 

 

 

 

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.

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.

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/