My Autism Is Neither 'Mild' Nor 'Glamorous'

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lucy chapman
Lucy Clapham

Recently I’ve read several articles about autism in which the writer, who often has an autistic child of their own, criticizes people putting “higher functioning” autistic people in television shows. They use words like “mild,” “not real autism” and “glamorous.”

While I appreciate that my experience differs from a lot of people with autism, namely those who are nonverbal (I do not like functioning labels much), I find it quite upsetting that someone would dismiss my experience of autism in such a way. Allow me to give you some examples to show why my “high functioning” autism is not “glamorous.”

Anxiety

It is likely that most people on the autistic spectrum suffer from anxiety at some level. Mine is severe, and that is not just me overexaggerating. I can have as many as 20 panic attacks in a day, caused by anything from seeing a moth to a massive
routine change. I’m scared to leave the house due to agoraphobia and have to be accompanied at all times as a result.

Behavior

My behavior can change quickly. Although I may seem calm, I’m probably just faking it. Just one trigger can change my acting stance into what I call the “real me,” and then my behavior is unpredictable (even for me!) and potentially even dangerous if not handled well by my support staff. Those of us with “high functioning” autism may be able to “fake it,” but usually only to some extent. It’s like the metaphor of the graceful swan paddling for dear life under the water, but you just see the calm.

Self-injury

This is not just reserved for one end of the spectrum; many autistic people experience this behavior. I’ve had to have wounds bound up after smashing my head into a wall repetitively. I used to suffer from rashes after I would burn myself on the carpet during a meltdown. As a teenager I often bit my arms and hands, sometimes until they bled.

Difficulty expressing myself

Although I talk… a lot… it’s rarely about what needs to be talked about, such as my feelings. I cannot tell you what feelings are going through my head because I cannot name them. As a result, a typical emotion can quickly become totally overwhelming to the point of a meltdown. If I’m feeling ill, I’m more likely to tell you to go away (in a much less polite way) than tell you I’m sick. I suffered from gastritis for well over a year before I was able to accurately tell anyone what the feeling was to pursue a diagnosis (and now treatment). Just because someone can talk does not mean they don’t have trouble communicating.

Auditory processing

Again, I can talk extremely well, which makes it confusing for people to understand that my comprehension is often extremely poor. While I can’t explain this scientifically (it’s probably a wiring thing), it’s extremely common in verbal autistic people. Not understanding most of what is said to you throughout the day can lead to yet more
frustration and more meltdowns.

Sensory processing

Some people with autism have sensory processing disorder (this can be diagnosed as a condition on its own without autism), and this affects the five main senses plus the vestibular system and proprioception. Everyone has this at a different level, so some may love loud noise, bright lights, strong fabrics, strong flavors/smells and vestibular
activity (stimming), while others may hate all of the above (although may still stim but to keep the other senses out). Others, like myself, may have an extreme aversion to one or two senses but seek the others. Sensory input, whether too much or too little, can also trigger meltdowns.

Meltdowns and shut downs

When everything gets to be too much, I either have a meltdown or a shut down. In a shut down, I will attempt to block out everything to the point where I’m basically catatonic and unable to speak. In a meltdown, many of the behaviors I described will come out, along with uncontrollable screaming and/or wailing. Neither can be solved
quickly or easily, and the best option is to leave me alone while I feel this way (which is easier said than done at times) to avoid further input. I’ve also gone into such a severe “flight mode” that I’ve ran into traffic without any thought for my safety. (Fight-or-flight mode is what animals go into when they are frightened. Humans have mostly learned to control this.) I will suffer from a “hangover” for several days after the shut down or meltdown and may have to sleep it off.

So to conclude: I can talk, but I cannot communicate. I do have some spiked skills but not enough to get me a job or earn me a place among the 400(ish) people with savant syndrome in the world. While my autism may appear to be less “severe” on the outside, it is still hard to live every single day like this, knowing things may never change or get easier.

Please try not to get into the habit of comparing people on the spectrum. This just causes anger and tension. And finally, always remember that if you meet one person with autism, you have met one person with autism.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Son's Meltdowns Seem to Make Time Stand Still

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There’re 24 hours in a day, but it can take just one meltdown to make time stand still. Each meltdown can feel never-ending.

My son was having a great day, but within seconds, he unbuckled himself from the backseat of the car and thrust back and forth screaming. I pulled over and tried to help him. I told him to use his words and do the four B’s — put on the brakes, take a deep breath, shut off your brain and hug your body — but he was at a point in the meltdown where the only way out was through.

For 45 minutes we were parked at a Chick-fil-A, the same place he so badly wanted to have dinner. Unfortunately, he seemed to have lost all sight of dinner or anything through the fog of his meltdown.

Seconds felt like minutes and minutes felt like hours as I watched my son no longer form words, hit his head and lunge to bite me. All I could do was watch and try to keep him safe until the fog lifted.

Then I could see his rage turn to sadness. His cries were less angered and became more of a cry for help. He leaned forward and said, “Mommy, my head hurts. Please let’s go home to bed.” I let out a huge sigh, buckled him in and drove back to our apartment.

The physical post-meltdown exhaustion wore on him like a 200-pound weight, and shortly after 8 p.m., he was fast asleep. I was lying next to him and cried out every emotion I felt. Anger because I couldn’t help him. Sadness because it’s not fair that he has to go through this. Fear because of his safety.

The list goes on and on, but after my late-night detox from it all, I find myself in him — in his strength — and I find hope. Hope for a better tomorrow. Hope that the next meltdown won’t be as bad as the last. Hope.

From one mom to the next, it’s easy to drown in the tears of a meltdown hangover, but no one said being a mom was easy.

Don’t live in the meltdown. Process it, feel it, but move beyond it. If nothing else, believe in hope and give anything but up.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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8 Uplifting Observations I Wish I'd Found When I First Googled 'Autism'

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author's son on a merry go round When my son was diagnosed with autism six years ago, I honestly didn’t know what to think or expect. I tend to err on the side of hope and optimism in all situations. Yet even the most basic Google searches left me simultaneously devastated and terrified — not knowing how to prepare or how to help him.

If you’ve been in the same situation, you know you can find some uplifting sentiments scattered around the Internet, but they’re few and far between. For example, there’s the “Welcome to Holland” poem and the “If you’ve met one person with autism, you’ve met one person with autism” statement. But other than that, there’s not a lot to cling to out there in cyberspace.

The following are eight uplifting observations I wish I’d found in an article when I was searching for hope at a time when I needed it most.

1. You will find strength you never knew you had. 

You will discover recesses of untapped courage and wisdom, and you will use them to guide your family and advocate for your child.

2. You will learn a whole new set of acronyms.

In the beginning, you will think the very people you’ve sought out to help you have their own secret language. OT (occupational therapy), PT (physical therapy), IEP (individualized education program), DRO (differential reinforcement of other behaviors)… the list goes on, but you will learn and become proficient in this alphabet-soup style of speaking faster than you ever imagined.

3. You will make new friends, and they will be honest and supportive.

Families, just like your own, will embrace you, and you will do the same for them. You can be real with one another because you are on the same path. These new confidants understand that your child will eat only one brand of yogurt, and they’ll never judge.

4. Words are overrated. 

Sometimes a smile, an unexpected hug or a two-word phrase is really all you need.

5. Milestones are still something to celebrate no matter when they occur. 

Blowing out birthday candles will make you cheer for your child no matter when he gets the hang of it.

6. You will gain newfound perspective.

Things that once would have bothered you — wet clothing left overnight in a washing machine, your favorite TV show getting canceled — are inconsequential now. If your child is having a good day, so are you.

7. You will find kindness in strangers.

When someone in a restroom says she won’t use the hand-dryer because your daughter is covering her ears, dreading the noise, your faith in the world will be restored.

8. You will see your other children rise to the occasion. 

Watching your other children show patience and compassion will make you realize they will be infinitely kinder adults because of the love they have for their sibling.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Wish Would Show Up When You Google 'Autism'

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I recently read a terrific article reviewing a new television drama series centered on autism. The show is called “The A Word” and is a six-part series produced by the BBC (as far as I know it is still currently only available to watch in Great Britain but reflecting on the growing ease-of-access to international entertainment, I am certain it will come available in the U.S. soon).

The article about the show that I enjoyed was written by an adult on the spectrum and her father, and one of the things that stood out for me in the article was the father’s description of his daughter’s challenges in school, identifying it as a realm on the spectrum called “demand avoidance.”

What he described was so familiar, sounding so much like what my son experiences, that I wanted to learn more about this “demand avoidance.”

More to the point, I wanted to learn about tools and strategies to see if we could adapt them to help my son with his struggles at school.

After an initial search online, I discovered very little information that I could use, and it was frustrating.

There is a lot of information available about autism on the Internet — in truth, there is too much information about autism on the Internet. A lot of the information is too clinical to be of use (such as scientific papers) or too generalized (such as new media articles painting autism in broad, often stereotypical strokes).

Very few search results offer concrete tools and strategies for specific issues. In a lot of ways I think the disparate and unfocused information about autism currently available online mirrors the disparate and unfocused way our society has responded to understanding autism.

What I would really love to see is a one-stop shop of autism information; a site that would start at the 30,000-foot level (the broad strokes information) and then allow readers to drill down on the particular issues they need information about, all the way down to the clinical, in-the-weeds scientific papers if they really wanted.

The site would describe all the extraordinary that is on the autism spectrum, connecting the dots between research and theory, behaviors and experiences, tools and strategies, and the social and cultural.

It would offer tools and strategies for specific behaviors and needs, as well as opportunities for readers to interact with others to enrich what they know and are learning on their respective journeys.

Most importantly, the site would be alive; it would not be a dead repository of set, unchanging information, but instead would be constantly monitored, updated and evolve to reflect changing scientific and social understandings of autism, informed by its readers as much as by researchers, scientists and evidence-based studies.

If and when such a site shows up first in my internet searches, I will know our society has truly matured in its understanding of autism.

Follow this journey on Autism Mom.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why Is There a Divide in the Autism Community?

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Looking back on my son’s first few years, nothing seemed “off.” I’d only really seen made-for-TV movies about autism, and let’s face it, I think they’re extremely poor representations of what autism is.

Autism wasn’t something that was talked about openly and honestly 10 years ago. I think a lot of parents are naïve and living under false assumptions. If a child talks by 2 or if there’s no regression around the same time, then this child you imagined in your mind is going to be a reality.

It turns out I was already raising an autistic child and didn’t have a clue. My daughter would be diagnosed with Asperger’s a few months shy of her 10th birthday. When my son started pre-K, all of the sudden I was that mom. The one the teacher always needed to talk to and the one who was getting letters home from the school social worker.

Seeing him around his peers, the differences were magnified. There was no denying he was “different.” So I did what I believe most parents do when they get a diagnosis of autism: I Googled it. Yes, I now know I was asking for trouble and misinformation.

Alarm bells went off in my head, and it felt like the world was crashing in around me. It’s a sensation of panic that’s hard to describe. I read every book and article I could get my hands on. I also thought there was a lot of scary information out there, not to mention some dangerous “treatments” that promise a “cure” for your “broken” child.

A year passed by, and the world didn’t come to an end. My child is still the same perfect little boy he was a year ago.

I started to relax into our new routine of therapy appointments and meetings at school. I got involved in the autism community, and once again, I was naïve to the fact that there is more than one way of thinking within this community.

You might stumble across a new page or group to like. Then it happens — you get caught in the crossfire. You’re quickly educated on function labels being offensive and how to properly address or speak about a person on the spectrum or autistic individual. Is it a disability? Is it a disorder? Do we need a cure? Is there anything to cure?

Everything you thought you knew has just been thrown out the window. You’ve just entered the great divide. On one side, you often have parents and professionals, and on the other, you often have autistic adults. Each side is strong in their convictions.

I would never want to dismiss what an autistic adult has to say. After all, my kids will grow up to be autistic adults. But there’s a growing friction within the ASD community. The words are flying back and forth on both sides.

You’re not like my child. My child isn’t as high functioning as you.

You’re neurotypical, you would never understand.

My child isn’t defined by his/her autism.

I’m autistic, not a person with autism.

When you say you hate autism, you’re saying you hate your child!

Applied behavior analysis is cruel.

Applied behavior analysis saved my child.

Awareness or acceptance.

Why can’t there be both? 

My head is once again spinning. Why is there a divide? Both sides serve the same interests: the care of autistic individuals. Both groups seek respect, jobs, education, accommodations and understanding.

It seems if both sides stopped pointing fingers at each other, we might actually get somewhere with the things we all want to accomplish.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I'm Not Afraid of Public Speaking as a Person With Asperger's Syndrome

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As a self-advocate, I have done a lot of speaking engagements about my life living on the autism spectrum. I have presented at schools to students and teachers. I continue to share my story at trainings for therapeutic staff support and mobile therapists several times a year. I have even done a TEDx Talk called “The Natural Rhythm of Stimming.”

One of the most common questions I’m asked is whether or not I get nervous when I present. People tell me I’m so brave for speaking. Many are surprised when I tell them I usually don’t feel nervous, embarrassed, ashamed or anything like that. They are surprised when I tell them that speaking about my own Asperger’s syndrome experiences is easy for me. Then I explain why.

woman standing in front of screen showing powerpoint
Erin giving a speech.

When I was in school, before I was even diagnosed, I tried to ask for help. Most people just told me I was fine and moved on. This was where I really started to struggle. It was hard for me to ask for help, and to hear someone say I didn’t even need it was so frustrating. I began to back down, and give up. Why should I speak up if no one wanted to listen?

Once I received my diagnosis in 10th grade, I noticed people began to listen more. They wanted to hear what I had to say. They wanted to understand. At that point, I realized that maybe I could get across to them the things I had been trying to say before.

For me, public speaking isn’t something to be afraid of. It’s a gift. It’s my chance to finally be heard after years of being ignored, misunderstood and doubted.

As Candice Cuoco, a designer on the TV series “Project Runway,” once said, “Whether people agree with your voice or they don’t, being able to speak it is what matters.”

People are willing to listen to me. Why wouldn’t I be willing to speak?

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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