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On 'Escaping to My Own World' as Someone on the Autism Spectrum

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I live with an autism spectrum disorder. That is, I wander an invisible maze with walls most people can walk through but I can’t. Sometimes, because I’ve managed to find a place in life situated along the devious routes I must travel, I forget the walls. And then, bang! I slam into one and stagger back, dazed, while my supervisors and colleagues wonder what the problem is.

Times like that are periods of deep depression for me. Maybe they shouldn’t be, but they are. They bring home how very carefully I must arrange my life to make it from one day to the next. How many opportunities I’ve missed. I feel hopeless, helpless, inadequate. I feel alone.

But, sometimes, I fight back. I revolt.

Several years ago I got in some hot water. The details are rather dull. There was a conflict between my idealistic conception of work to be done and conscientious attempt to do it, and the practical, political realities of modern life. It’s a common enough story for someone with my diagnosis. Rebuked for trying to do my job well, and confronted as I had not been for some time with my social blind spots, I retreated into myself.

I collect. I arrange. I collate and cross-reference. Day in and day out, that’s what I do to survive. When I was a boy, I stacked or made patterns. Later, I studied biological taxonomies and mythical genealogies. I collected insects. I wrote histories of the future. I created alien races. At some point I obtained a doctorate in math.

These pursuits of mine are like breathing or eating. I can’t live without them. When confrontation occurs, that’s where I fly. I don’t withdraw from my duties, mind you. Flight and desertion are different things altogether. Rather, my private withdrawal to a secret inner world gives me the strength to brave public life.

After the incident just referred to, which was only the last in a long line of similar occurrences, something snapped. This time, instead of making a temporary retreat, I set about the construction of an entire secondary universe.

And that’s where I go now when I need to escape the bright sights and shrill sounds and baffling bureaucratic quandaries that punctuate my life. Yes, I escape. I know the word has gathered a few negative connotations. True, escape can be the act of a coward. But escape can also be the act of a hero. Escape, you see, is a lunge for freedom. It’s a one-man revolution.

My collecting and organizing, once closed in on themselves, are now the acts of a demiurge, a world-maker. This isn’t withdrawal from reality because my universe is our universe, our universe as seen through my eyes. I’m not really creating a secondary world at all. I’m exploring the real world, trying to understand it and find my place in it. The anguish and confusion and frustration that would otherwise be locked up in my brain finds outlet there. It takes on flesh and walks the earth.

I took to setting these visions to paper. I painted. I wrote. Then one day a curious thing happened. I submitted a story to a magazine, and it was accepted for publication. It was accepted, and I got paid for it. After having thrown a million bottles into the sea, a response had washed up on shore at last.

Since then I’ve gotten a number of other stories published. I’ve written two novels as well. They are apparently too idiosyncratic to be marketable. So I’ve self-published them, with my own illustrations, because I have only so long on this earth. It’s so refreshing to do this because, to my mind, at least, I’m not doing it for myself, but for the enjoyment of others. For once my efforts are directed toward someone else.

Some readers have dared to enter my world with me. Not many, of course. And not all like what they see. It’s not always the pleasantest of places. But a few have found beauty in it, and that’s enough to make it worthwhile. Most of the people around me don’t know my secret, and I’m fine with that. It’s like having a secret tunnel I’ve dug, hidden behind a poster in my office.

Sometimes I ask myself: What am I doing? Where am I going? What meaning does it all have? At such times, I look to the tree. The tree does not ask questions. The tree grows where it’s planted. It gropes its way along lines laid out for it when it was only a seed, taking in the sun and the rain, but following its own inner logic.

That’s what we all need to do. Whatever our strengths, whatever our weaknesses. We need to flourish as what we are, and let someone else worry about what good it is. We need to have the courage to make our own universes and, in so doing, carve ourselves out a place in this one.

Image via Thinkstock.

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How to Help Me When I'm Having a Meltdown

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Recently, The Mighty asked individuals on the autism spectrum to describe what a meltdown felt like. This is Sarah’s response to that piece.

Since a meltdown is more than just the event itself, I decided to break it down to what happens right before, during, and after one, and add some advice about what you can do to help me if I’m having a meltdown. I also want to make it clear that my experience does not apply to everyone on the spectrum. While I’m sure some can relate to my experiences, they are not universal, as everyone on the spectrum is unique.

Before the meltdown: My meltdowns are often set off by an outside event. A lot of times, the event is something small — something that seems so minor, people don’t understand why I’m overreacting. But the thing is, the event that causes my meltdown is usually a “straw that broke the camel’s back” sort of thing. I might already be anxious and upset, for one reason or another, and something just sets me off.

On one occasion, my parents and I had tickets to a musical and were planning to have dinner beforehand. The problem was, I forgot to eat lunch that day. I was doing something or another and just didn’t realize what time it was until I realized I had to get dressed and we had to go. I thought I’d be OK because we were going to eat right away. Still, I was nervous because I’d never been to this restaurant before and I wasn’t sure if I’d like the food. So the worries were starting to pile up.

Then, on the way, we got stuck in traffic. So I was getting even hungrier, was anxious, and was now concerned about being late for the show. When we finally reached the restaurant, the lighting was dim and the music was loud. Every clink and clank of silverware and plates became deafening as I neared a meltdown. I immediately retreated inside myself and just stopped reacting to things. At first, my dad thought I was pouting, but I explained I was trying really hard not to melt down. Fortunately, I was able to avoid a complete meltdown. (Also, this may be because I was really hungry, but that was the best macaroni and cheese I’ve ever had!)

During the meltdown: If I can’t calm myself down in time, the meltdown starts, and it feels like a bomb is being set off. My body feels like it’s about to explode, and I begin losing control. I can no longer control my movements, and my body tends to kick, hit and generally lash out. Sometimes, I think these movements are a way of trying to protect the people around me by getting them out of the way before I “blow up.”

Some people can’t speak when they have meltdowns. That’s not the case for me, but sometimes I wish it were. While I’m still able to speak, I lose control of the words that come out. Unfortunately, my speech often takes the form of profanities, if it’s coherent at all. I’ll scream insults and obscenities. All the while, my brain is saying, “Stop that! You don’t mean it, why are you saying that?” but it’s no use. Once I hit full meltdown, I can’t control my body at all anymore. I feel like I’m trapped in a robot shell that’s out of control, and while I can observe what’s happening, I can’t stop it. I’ve screamed terrible things at classmates I barely knew, and lashed out physically at my parents when these happen. And, even though I’ve lost complete control when I do it, I have a really hard time forgiving myself afterwards.

After the meltdown: Even when a meltdown is over, it’s not really “over.” The best way I can explain it is it’s like getting burned (which has happened to me several times; I’m really clumsy, which can sometimes come with Asperger’s). Just because you take the heat source away, the burn doesn’t disappear; it doesn’t mean you can just move on. Now you have a wound that needs treatment. You feel completely raw. The pain isn’t necessarily excruciating, but you’re extra vulnerable to any additional pain or frustration. You need proper care and, most importantly, rest, to recover.

So, from what I’ve written, a meltdown probably seems super scary. It is. It’s absolutely terrible. So how can you help? Well, that’s the thing… you really can’t. For me, at least, the only one who can calm me down is myself. The best thing you can possibly do if you see me in the process of having a meltdown is to give me space and let me fizzle out. If I seem like I’m starting to withdraw, please don’t try to push me further. That’s not going to help anyone. And, please, do not try to hug me or offer me physical contact. This seems to be a common response, but it only makes me more nervous and upset. After a meltdown, once again, the best thing to do is leave me be. Be gentle with me and realize I’m still vulnerable.

Now, I understand this seems counterintuitive. So I absolutely do not expect people to know how to handle these situations. And I know it’s a lot to ask people to be easy on me when I’m insulting and possibly lashing out at them. I am not asking you to magically be OK with what I’m doing or forgive me for what I do. I’m writing this simply to help people understand what’s happening and why.

To sum up, I think a good meltdown analogy — for someone who loves video games as much as me — would be a Bob-omb. You know, those little bombs from Mario games that walk around and have eyes? When they’re walking around they’re peaceful and happy, often helpful. But once the fuse is lit? Stay away until the explosion’s over. That being said, don’t worry, I won’t chase you like a Bob-omb would!

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15 People on the Autism Spectrum Describe What a Meltdown Feels Like

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“Why are you freaking out?”

“Calm down.”

“That child having a tantrum just needs some discipline.”

“What a brat!”

“What a weirdo.”

People on the autism spectrum, and their loved ones, unfortunately hear phrases like these every day. Why? Because they often experience sensory overload when too much sensory stimulus is occurring at once. It can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s also associated with diagnoses like sensory processing disorder (SPD), chronic fatigue syndrome, fibromyalgia, post-traumatic stress disorder and more, although anyone can experience it. Often, a meltdown is the only way to relieve the building tension of sensory overload.

The outsider may perceive this as throwing a tantrum.

Let’s get a few things clear: a meltdown is not  the same as a tantrum, and people who experience meltdowns do not choose to break down. Every person has different techniques for preventing or getting through meltdowns. Different coping mechanisms work for different people. What universally doesn’t work? Judgmental stares, points and especially comments. But we’re not trying to call you out if you’ve ever mistaken a meltdown for a tantrum — we’re just here to help you understand the difference.

We asked autistic individuals in our community to describe what it feels like to have a meltdown. Hopefully their insight will help spread some understanding and empathy.

1. “It literally feels like my head is imploding. Building up to it gets overwhelming, but an actual meltdown is just like… like your brain is ceasing to exist. Of course, it doesn’t actually, but I lose control of my muscles and ability to talk, I can’t modulate my voice or really send any signals from my brain to my body to calm down. It’s as though my brain… as a last-minute thing, sends a bunch of energy to the rest of my body, but there’s no instructions for how that energy should be used, so it just goes all over and is out of my control.” — Shayna G.

2. “It’s like a volcano. It builds and builds, and it builds so fast into a big explosion and it is fire that destroys until everything is gone.” — Devra R.

3. “I feel trapped. I have a weird tension in my head or my arms I want to get out. Everything around me suddenly feels extremely real like I’ve just come out of the water, I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone. People think because I ‘only’ have Asperger’s I shouldn’t be able to have meltdowns, but I am. I know they’re not as “destructive” or as “obvious” compared to a meltdown my brother would have, but I’m still capable of having them. People tell me to ‘calm down,’ which only makes me feel more frustrated because I already know that.

Once the meltdown is ‘over,’ I can’t explain to others why it happened because it isn’t until later at night (or later than that) when I realize it was a meltdown. By the time I come to the conclusion, it’s too late. Others would have forgotten what happened or wouldn’t care. Either way I end up looking like some sort of ‘attention seeker.’” — Chi C.

4. “It’s like I’m spinning out of control — no ground, no air, no sky, just me and fear and rage and desperation. My bones vibrate, grate, splinter. My chest is hooked up to a vacuum, pulling through my chest. I wake up with bruises and cuts and scrapes from grabbing onto anything, everything that may pull me back to earth. My memories of meltdowns are usually erased by morning, and I can only remember vague feelings. If i dwell on those too long, it becomes too intense, and I have another meltdown. I’m not ashamed of being autistic. I refuse to be. Just because it shapes who I am doesn’t mean I have to let other people decide how it will. But God, meltdowns are indescribable. Too big for my small body. Too big for this small planet. Painful, like razor blades, not over your skin, but over your soul. Your entire being is twisted by an outside force, and when people say ‘it’s just a noise,” “just an argument,” they show they truly do not understand. And often, the solution is simple. Often, I’m screaming for it. Make the buzzing stop.” — Holly H.

5. “Uncontrollable, almost like Jekyll and Hyde. It makes me feel like someone or something flipped a switch in my brain and took over my body, abolishing any rational thoughts, reactions, and communication. The blood in my head pounds, and everything in it magnifies more than it seems it can hold or handle. There’s a small section of me in the back that recognizes what’s going on and wants to stop it, but it can’t override the system. My primal base and flight-or-fight is on high gear, so I end up instinctively isolating myself to get anyway from any other living energy form. Only then can it have the space to breathe to start to calm down eventually.” — Laura S.

6. “It feels like all the pressure that has built up in me (like a fizzy drink) explodes, and you can’t stop, and you lose control until all the pressure is out, and then you sleep to regain strength.” — Lauren H.

7. “I lose complete control of my ability to regulate my emotions — the ‘filter’ has gone, and I lose the ability to stop obsessing over whatever is upsetting me. Sometimes I have uncontrollable urges to throw things and make a psychical expression, but this decreases my ability to articulate the problem. A vicious circle. If I am scared rather than angry I will lose the ability to speak and engage with the world and will feel the need to hide in a space for hours. Always, exhaustion follows.” — Kym F.

8. “Scary, like an out-of-body episode. I lose my ability to think or process, and can only feel. And I feel everything. Every noise, every draft. I want to scream, and sometimes I do, just wordless screaming. And all the while I feel like I’m watching myself in third person, and that tiny part of my brain that is still capable of rational thought keeps thinking, ‘Why am I doing this? Calm down, control it!’ But I can’t control it.” — Tiffany D.

9. “For me personally, it’s like a huge, overwhelming tidal wave of emotion and sensory awareness, building up and up, before crashing down horribly. I’ll often break down crying or in anger or both — leaving people around me offended and/or confused. It leaves me completely washed/burnt out from head to toe, inside and out, unable to talk or sometimes even move. It can be a total shut down where I can’t speak to verbalize what I’m thinking, which can be several things at once. I need time and quiet space to come around, away from people, where I can engage in a favorite repetitive activity such as artwork/fiber arts which I find very calming and which helps me move past how I’m feeling to think clearly and function normally again.” — Kath S.

10.“I feel like I just want to be alone, and usually that’s what i do! I isolate myself either in my room or I go to the forest just to walk. When I tell my friends, they think I’m weird because I just don’t want to be with anyone.” — Kasper M. 

11. “It’s very intense and a build-up of extreme emotions all coming out at once. Sometimes, the only way you feel you can calm yourself down so I doesn’t last for hours is to hurt yourself because pain feels like a release of those extreme emotions.” — Kathryn B. 

12. “In my head it sounds like a hundred voices all taking at once and wanting to scream.” — Richard T.

13. “It feels like I can’t handle things anymore, and I can’t stop my reaction to it all. As if I’m no longer in control of myself. So I end up either crying and hyperventilating or both. I think about each problem I have, try to come up with a solution to it, can’t, and let out the emotions. I repeat this process until the emotions are out. Sometimes, I need something to help stop the process (stimming, a weighted blanket, etc.) or it will just continue to escalate. It’s not fun, and I don’t like when it affects others around me, but it’s also necessary sometimes to sort of ‘reset’ my system.” — Erin C.

14. “Just awful. Like no-one understands, everyone’s laughing or staring at you, and you’re just ‘making excuses’ or ‘making it up.’ What could happen next? I get arrested, or get hurt, or hurt someone else? Unfortunately, this does, and has, happened.” — Shaun U.

15. “It’s like a train that won’t stop! … Once it’s over, I feel emotionally numb. After a good night sleep I’m ready to conquer the next day!” — Jordan S.

Image via Thinkstock.

If you are on the autism spectrum, how would you describe what a meltdown feels like? Let us know in the comments below.

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How Demi Lovato's Message at the DNC Inspired Me as Someone With Autism

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Demi Lovato, a mental health advocate, spoke at the Democratic National Convention (DNC) this week, and she did not disappoint. The message she gave that really stuck out to me was:

“This is not about politics. It’s simply the right thing to do.”

Watch Demi’s entire speech here:

“What a wonderful thing to say,” I thought to myself. This is an important message for everyone in our country needing support, whether it be for mental illness, disease, disability, etc. Lovato then went on to discuss how she had access to the resources she needed for her own mental illness, but many Americans today do not.

Although I’m not living with a mental illness, I struggled as a child due to autism. However, because my parents were paying out of pocket, I was able to get the early intervention and support I needed to thrive. Now, as an adult, I speak as an autism advocate to our legislators about the need for autism and other disability legislation.

I’ve written before about Lovato speaking up for the cause, and I believe moving forward, we need more celebrities and advocates to start using their platforms to discuss these serious topics and help our loved ones. I applaud her for what she did and continues to do to be a champion for mental illness.

As she concluded, “every small action counts,” and we can never forget that. We can all make a difference.

You can read a version of this blog at Kerrymagro.com.

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When a Classmate in College Called Me ‘Rain Man’

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Do you know that I was once called Rain Man by a classmate in college? Wow. I was furious. When I look back at why anyone would say something like that, I think of some of the stereotypes about autism. Some think people with autism lack social interaction, and others think people with autism are good at math.

In the 1988 movie “Rain Man,” actor Dustin Hoffman plays a character who is autistic and is good with numbers, but he also lacks some communication skills. Because of the popularity of this movie and because autism was still very unknown during its release, it became, for better or for worse, a characterization of what autism could be.

But you know what the problem is here? I’m autistic and I’m nothing like Rain Man. I’m now an adult with great verbal communication skills, I’m not as good in math and the differences keep piling up.

You see, autism is very broad. No one diagnosis is the same, and therefore, when we think of Rain Man, we must think of Rain Man as only Rain Man. He is one symbol of the countless symbols of real people out there who have autism. I think that’s what makes our autism community great. We all are unique in our own way, and we all have the opportunity to have our “voices” heard.

Sometimes that voice is not a verbal one. Sometimes, it’s heard through our art or music or some other skill or talent we have. Sometimes, it’s simply a smile for our family members. Each and every individual with autism is a new and unique symbol of what autism is today and will be for our future. So in keeping with the future, to those who are reading …

Please don’t call me Rain Man. Call me Kerry. Don’t think I’m bad at verbal communication because, in fact, in my own way, I’m great at communication. I’m getting a master’s degree in strategic communication to boot. Don’t think I’ll be ready to help when it comes to numbers because all I’m going to do is pass you a calculator. And, most importantly, just look at me as me. I’m Kerry and there is only one of me. Just like there is only one of you. Let’s embrace the fact that there will only be one Kerry Magro, just like there will only be one Rain Man. We write our own stories based on the biography of life which we are all living through right now.

Let’s make sure the chapters we’re writing are good ones by living it just the way we are. So please call me Kerry the next time you see me because that’s who I was always meant to be.

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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4 Tips for the Special Needs Parents We Don't Talk About

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I am an avid reader. I read tons of books and even more blogs. As someone who considers himself to be a part of the special needs community, I read a lot of blogs about special needs families. Over the last two years, I’ve discovered there is a wealth of resources and reading material for parents who have children with special needs. As a result, the term “special needs parent” has become almost synonymous with that scenario.

I applaud and admire those parents and caregivers. They do a tremendous job and deserve to be recognized. All the parents I know who have children with special needs do it because they are parents. That is their child. That is their reason. That is their motivation.

With that being said, there is an entirely different population of special needs parents out there who can sometimes be overlooked and underappreciated. They are the parents like me, parents who don’t have a child with special needs. Instead, we are special needs parents because we are parents and we have a disability. There are many parents with disabilities that care very deeply and passionately about our children. The primary difference is that we are special needs parents because we are caregivers who at times need a little extra care ourselves.

In 2014 at age 36, I was diagnosed with ASD (autism spectrum disorder). I had a family, a career, and three children when I was diagnosed. I also had lived my entire life struggling with something that was both unknown and unnamed. From the outside looking in I was a regular guy to most, but to those who knew me well, like my wife of 15 years, there was an obvious struggle.

I have to admit that I have been blessed. My wife is an amazing woman who is extremely supportive. Since my diagnosis, we have embarked on a journey of discovery that has made life as a husband and father less complicated for me. We have learned how to allow me to slowly deal with my limitations while still being the best father I can be to our three beautiful boys.

Special needs parenting and being a special needs parent both require passion and persistence, but being a parent with special needs has taught me four ways spouses and co-parents can help provide an environment where we can participate in raising our children with the passion and love they deserve.

Lamar and his family.
Lamar and his family.

1. Understand our capacity. Life on the autism spectrum can be a roller coaster for me at times. To be honest, I’m not always sure when I will be up to performing some of the social tasks of fatherhood. Both my wife and all of our children are extremely outgoing. They love to hang out at the pool, walk around the mall for hours, and go out into the world with absolutely no agenda except to hang out all day. I have social anxiety, and I usually have the capacity to hang for about 2-3 hours before I have stepped over my limit. My wife understands that, so together we organize activities differently. For example, they may plan a trip out on the town, and I may join them around lunchtime to continue the day with them when I am ready to hang out. This strategy has worked very well for us.

2. Learn to take our cues. ASD sometimes limits my ability to pick up on social cues. Sometimes the world can be complicated, because I may miss important cues. Neurodiverse minds also have a system of social cues, and because most human communication is non-verbal, we must both realize that we are both constantly communicating through a system of social cues. My wife doesn’t just depend on me to pick up on neurotypical social cues; she has learned to pick up on my cues as well. This has been extremely important in our ability to parent together, because she is able to understand the things I am sometimes unable to verbally communicate.

3.Use creativity. Autism is a part of my neurology. My brain simply sees things in a completely different way. It is not always a matter of personal preference. While this is an unchangeable reality, the advantage is that it can enhance our parenting skills, and provides our children with a very creative environment to grow up in. In addition to our different personalities, our brains function quite differently. Our approach to
parenting must be unconventional. There are no “traditional” roles in our home, because we can’t afford to box ourselves in. Because of neurodiversity, our family is extremely creative in how we approach everything, from disciplining the kids to how we vacation.

4. Allow us to have some control. One of the misconceptions about people with autism or special needs is that they are incapable of handling certain tasks. While I admit there are a few things I struggle
with, I also have many strengths. I am not advocating for the right to be controlling, but I have found it helpful to allow the special needs parent to have major influence in their areas of strength. For example, as a person on the autism spectrum, I can be very detailed with certain tasks. Time is one of them. I am almost never late to anything, because I have an internal clock in my mind. While my wife and I do not share the same sense or sensitivity to time, we find that it is much better to allow me to have a major influence on time and schedule sensitive issues such as getting the kids off to school, getting the kids ready for bed at their designated bedtime, or even planning out-of-town trips. Being late to something isn’t always a bad thing, but being on time is always a good thing so it’s OK to let me take the lead on those
types of issues.

Parents of children with special needs answer the call every day to love and be caregivers for their children. For that I am grateful, but I am also eternally grateful for those of us who are special needs parents because we have disabilities. We too answer the call every day to care for our children, as we live life with our own
distinct needs and challenges, as well as our own distinct gifts and graces.

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