Silhouette of woman against purple sky and light posts

I Am Autistic. Am I Mighty?

518
518
2

I don’t feel mighty when I wake up in the morning, still exhausted from yesterday. Even though yesterday was a regular day. Even though I’m eating well. Even though I got nine hours of sleep.

I don’t feel mighty when I walk through the crowds in the farmer’s market and the noise assaults me like a waterfall: pounding out all the energy I have to manage myself and drowning me in the pool of my own world.

I don’t feel mighty when I can’t handle the curry at a chili cook-off. Yesterday was fine. Why must I be so sensitive today?

I don’t feel mighty when I fail to communicate how much I need to go someplace to calm down. Or when I don’t go take care of myself, even if that means ditching the person I’m with. I hate feeling that it’s wrong to leave to take care of myself.

I don’t feel mighty when I come home, lock the door to my room, and cry. I don’t feel mighty having a meltdown. How could anyone feel mighty in that dysfunctional state, where what’s inside doesn’t come out right and what’s inside is a filterless mess of thoughts?

I don’t feel mighty when I’m told that I should be careful of how I act in a library, considering it’s a potential place of employment for me. It’s good advice, but the reminder cuts to the core of my underlying terror. I’m afraid others are compounding the stringent judgment I’ve laid on myself, simply for not being able to handle myself on a normal day. Somewhere in my mind I’m still blaming myself for the fragile state I was born in, and blaming myself for not knowing how to care that fragility when I ought to be astounded that I have an inkling as to how I can care for myself.

But maybe the mighty don’t need to feel mighty to be mighty.

I am mighty because I get up in the morning, even when I’m tired. I adjust my day according to the energy I have. And at the end of the day, I take care of myself by going to bed on time.

I am mighty because I know what things will make me feel soothed as much as other things disturb. I am mighty because I use those things to calm down and keep me in a safe place.

I am mighty because I leave. When it’s too much for me, sometimes I do leave, shoving away all of the false thoughts of failure. It’s not wrong to leave to take care of myself.

I am the mighty because I choose to take the time alone to cry and do whatever else I need to do to reset. I suppose if I have to break down, there aren’t many safer ways of doing it. I am mighty because my life isn’t as dysfunctional as it feels like it is when I’m in a meltdown. I’m using the skills I have learned to manage myself to be able to live on my own, excel in school, and somehow still manage to make and maintain meaningful friendships.

I am mighty, because I can celebrate the small things that are actually huge steps for me, like being able to participate in a group setting. I am mighty because, in spite of my fear, I’m learning to say, “This is overwhelming, I need to leave.” I’m learning to gently care for my fragile self: to forgive what I lack, to have patience with what I’m learning, and love myself in whole, even the dislikable parts. 

Yes, the mighty do not have to feel mighty to be mighty, because mighty has become a name to be used for the people who survive panic attacks, wade through the drought of depression, and live with chronic illnesses. And yes, even me, an autistic, who breaks down every once in awhile after doing a phenomenal job of taking care of herself.

I am a part of the mighty.

Image via Thinkstock Images

518
518
2

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Mom Creates Autism Law Enforcement Response Training for Police Officers

10k
10k
15

As a former police officer and mother to a child on the autism spectrum, Stephanie Cooper knows how important it is for police officers to be able to recognize autism. To help ensure safer interactions between the police and people with autism, Cooper started Autism Law Enforcement Response Training (ALERT), a training program for police officers that provides officers with sensory kits designed to help autistic people.

“People with autism have communication issues, and law enforcement officers need to be aware that their typical approach when responding to a call or an emergency situation with someone with autism spectrum disorder may not work,” Cooper told The Mighty. “By the police being aware of people with autism it helps ensure the safety of not only the person diagnosed with ASD, but the police on the scene as well.”

Cooper created ALERT after watching a police officer interact with her son, who’s on the spectrum. “When the officer arrived [my son] was having a sensory overload,” Cooper recalled. “The officer luckily understood about autism and helped me keep David calm while we filed the report. But it got me thinking what would have happened if the officer did not know about autism.”

Cooper asked the officer if his department had any autism training programs, but it did not. Wanting to ensure more positive interactions between law enforcement and people with autism, Cooper began researching autism training programs for police. “I realized even though there are some training programs out there for the police that there are still not enough training programs available to assist every law enforcement agency,” she said. “So I offered to train my local police agency, and it all started from there.”

As part of ALERT’s “Autism 101” training, Cooper trains officers how to recognize a person who has autism, what behaviors they may exhibit, what types of calls may be received and tips for how to interact with a person on the spectrum.

“Officers [should] know that an autistic person may flee when approached by an officer, and fail to respond to an order to stop,” Cooper said. “Officers should not interpret any of these actions regarding an individual with autism as a reason for increased force. Officers [need] to take their time when dealing with an individual with autism, to allow for delayed responses, to speak slowly and clearly to an individual with ASD and to be aware that autistic individuals react to their environment.”

Once they’ve completed “Autism 101,” officers receive a kit filled with items designed to help people with autism, such as visual communication cards and a variety of calming sensory items.

So far ALERT has provided training and more than 100 kits to law enforcement agencies in Cooper’s home state of Florida. In December, Cooper will be training the Hammond police department and the Tangipahoa Parish sheriff’s office in Louisiana, and handing out 200 autism sensory kits.

Beyond Florida and Louisiana, Cooper is working on expanding ALERT into a nationwide initiative, with the goal of training and giving kits to law enforcement agencies in every state.

10k
10k
15
TOPICS
, Video,
JOIN THE CONVERSATION

How a Website Helps Explain My Experience as a Person on the Autism Spectrum

167
167
0

I remember many years ago, not long after I was officially diagnosed as being on the autism spectrum, I had been searching for ways to explain my struggles. I was trying to be a self-advocate, but I just didn’t know how to put my thoughts into words quite yet. I turned to the internet for help. Somehow, I came across a link for a website associated with PBS called Misunderstood Minds. Considering I felt misunderstood, I clicked on it.

The site was based on a PBS special about learning differences and disabilities. It included interactive activities where you had to listen to and follow instructions. After completing the activities, you find out if you did them correctly or not.

The link I had clicked on brought me straight to the “Attention” page, where I saw the words “Experience Firsthand” at the top followed by some activities to try. By this time, I knew that I learned well through experience, so I decided to try one.

The auditory activity hit so close to home. I was supposed to listen to the directions from the teacher and put cards on the screen in certain places. When I was done, the cards would flip over to show one big picture. By the time I was done, I had missed the instructions for over half of the cards, and my big picture was an unfinished, jumbled mess.

But as a result, I realized I had found my way to explain some of what I experience. It was a way to share the difficulty I had in trying to process what people are saying, especially while distracted. It was also a way to show that, no matter how hard I tried, I couldn’t seem to get things right. I needed help, and this activity allowed me to express that in a way that I hadn’t been able to do before.

The reason the activity helped me to explain what I experience to others is because I knew that, no matter how hard people tried, they would still struggle with it, too. At one point, the teacher in the activity even mentions that everyone needs to “listen up” or they would get it wrong. Well, this experience showed to others that even when I tried my best, I would still mess it up. And after struggling so much every day, multiple times a day, sometimes I would feel so helpless and defeated that I would give up instead of asking for help. This activity helped explain why.

Over the years, I’ve found more words to communicate my needs and have become a major self-advocate. However, this activity still provides insight into my world. I fall back on it, from time to time, using it as a tool when I struggle to explain why I need help.

Lead photo source: Thinkstock Images

167
167
0
TOPICS
,
JOIN THE CONVERSATION

Real People, Real Stories: Autism Spectrum Disorder E-Book

113
113
1

Whether you (or someone you love) have just received an autism diagnosis, have been a part of the autism community for a while, or simply want to learn more about autism, this book of stories is for you. This book is comprised of stories from the perspective of people on the autism spectrum as well as parents and other loved ones in the community. You’ll read powerful responses to questions like, “What does autism feel like?” and “Why is eye contact hard for you?” You’ll learn about the importance of autistic “obsessions” and the impact eating issues can have. You’ll also follow the journey of a wife and her husband after realizing he, like their daughter, is on the autism spectrum. You’ll find these stories and more in this e-book. Click below to download our free e-book. 

Download our E-Book

The book contains the following stories:

When People Say ‘You Look Tired’ by Lamar Hardwick

Someone Asked My Son With Autism Why Eye Contact Is Hard. This Was His Answer. by Lisa Reyes

When People Wonder If My Daughter Really Has Autism by Jessica Wright

What It’s Like to Deal With Eating Issues as Someone on the Autism Spectrum by Erin Clemens

What a Meltdown Feels Like for Someone With Autism by Emma Dalmayne

When We Realized My Husband Has Autism by Jessica Offer

Autistic ‘Obsessions’ and Why We Really, Really Need Them by Chris Bonnello

My Answer to the Question ‘What Does Autism Feel Like?’ by Lori Sealy

When a Boy With Autism Asked Me What It Was Like When I ‘Had Autism’ by Amy Gravino

If the World Was Built for Me by Rhi

Download our E-Book

113
113
1
JOIN THE CONVERSATION

My Struggle to Find 'Home' as a Woman With Autism and Mental Illness

46
46
1

I am a woman with a diagnosis of an autism spectrum condition and atypical schizophrenia. Housing has been a significant challenge for me throughout my life. Here is my accommodation story.

Housing was always a challenge for me. I moved out of home at 17, an undiagnosed autistic woman sharing accommodation with other young adults who seemed to be privy to a secret rule book about etiquette which I was not able to read. I went through a new shared house every six months for some years. I would either find the inhabitants of the house irritating but be unable to tell them, or the housemates would get sick of me and move out, leaving me lonely and poor, paying the rent for an entire house and sitting by the phone waiting for it to ring. In one place my housemates stole all my money and moved! Sharing housing wasn’t the most helpful accommodation option for me.

In my early 20s, my life went on a bit of a chaotic trajectory. When I applied for public housing some years later, I was assessed as being the highest level of housing need and was granted a spot on the priority housing list as a homeless person. I was a little surprised at this, but when I realized I had lived at over 40 addresses in the previous few years, I understood why I was granted priority status.

I received welfare benefits for 15 continuous years. The worst thing about this was the complete lack of choice around where I lived. I spent years being sent to live wherever there was a spare place – from crisis housing in a boarding house to a dodgy suburb where stray dogs prowled and I wouldn’t venture outside after 6 p.m. I also lived in a variety of mental health crisis accommodation programs. I spent two years sharing an old mansion full of spiders with 14 others, all young people with serious mental illness. Other residents would drink and use drugs, and their mental health crises were triggering and frightening.

When I finally got my “own” public housing property – which I was expected to inhabit until my dying day – I was filled with horror. Because I was on the priority list for public housing, I had to accept the first property I was offered, otherwise I would go to the back of the waiting list, which at the time was seven years. I thought I could avoid high density public housing because my application included a note from my psychiatrist saying I shouldn’t be in a development more than three stories high. Most of the public housing in Melbourne at that time was high rise, and I really didn’t want to live somewhere like that. Sadly, I was given a place in a huge development of many blocks of 12 apartments. Most of them were inhabited by alcoholics and drug addicts. There were even school bullies who always asked me if I was a boy or a girl. Their derision took me straight back to my own very unpleasant school days. I lived in this place for almost four years.

My awful housing situation was a catalyst in me finishing my education and applying for public service jobs, despite the low likelihood of finding employment with my disabilities. Had I lived in a nice low density housing complex, with some public housing and some privately-owned properties, I would probably never had taken the journey I did. The fact that my living situation was so challenging set me on the path to where I am now. I am happy about that.

I moved to Canberra in 2007 to take up my new job. Shortly after, I bought my little home, known to its friends as “Whimsy Manor.” I love my little flat with all its art and its resident black cat. It took me a few years to appreciate the charms of my little apartment though. I had a number of expensive maintenance issues for the first couple of years, and these contributed to a significant episode of mental illness that lasted form 2010 to 2013. Having been in insecure housing for so many years, my anxiety around my home was intense. I kept worrying the walls would fall down. I had to make a conscious effort to love and accept my home.

I often reflect on how fortunate I am to have this little piece of Canberra which is crammed full of my things. I don’t have to share it with anyone except Mr. Kitty. There is no longer a risk of being robbed by the junkies next door – because I’m fairly certain there are no junkies next door! My home is my supportive place. I know many others in the world are not that fortunate.

There are so many people living in unsuitable housing or insecure housing. It can be a huge issue for people with mental illness, autistic people, and people with disabilities in general. We can struggle in shared housing, and low employment rates mean for many people, buying property is an impossible fantasy. I wish I could buy a Whimsy Manor for everyone who needs one.

46
46
1
JOIN THE CONVERSATION

A Half an Hour With My Son on the Autism Spectrum

3k
3k
1

Just last week, my brother offered to hang out with my son for a half an hour.

I know this wasn’t easy for my brother. I know he wanted to seem totally nonchalant about the whole thing to make me feel at ease. I know his mind must have been racing…

What if he’s scared of me? 

What if he hurts himself? 

What if he’s totally traumatized by the whole thing? 

All these thoughts and he still offered. What heart. 

As my husband and I left for a 30-minute drive, I started thinking. This simple gift of a half an hour of his time could easily turn into hours, then days/months/years… 

Then my brother would truly know my son, not as someone to be pitied, but as a person with a beautiful soul. One who loves tickles, shoulder rides, playing tag, hugs and kisses. One who lives transparent and free, one who is about as real as a person can get. 

mom and son snuggling

Then, instead of asking me how my son is doing, he could answer for himself. He could honestly say, “He’s perfect” because he will love my son, not for what he can or cannot do, but for who he truly is.

Hope soared in my heart as I saw the glimpse of a relationship forming. This has always been my and my husband’s biggest wish for our son — for him to connect with others, to let people in so they can know and love him as we do. 

So, after the half hour was over, we pulled up to our home.

I was a little anxious as I rang the doorbell.

My brother opened the door with my son at his side. They both had the biggest smiles on their faces. Then my brother said to me, “That was way too short, we gotta shoot for an hour or so next time.”

My heart soared as I smiled the biggest smile right back at them both.

I implore all of you out there, be open, be like my brother and just give half an hour of your time to get to know a loved one with special needs. They may be different, and it may be a bit scary for you, but it can be a life-changing event.

I’m not talking about teaching someone skills — I’m talking about connecting with someone. They may not be able to talk to you, or look at you, or express any outward sense of appreciation, but every time you return, they will feel more and more accepted, more and more comfortable, and they can start to trust you. They can start to realize you don’t want anything from them; you just want to be with them, and they may in turn start letting you in. When you can be present for someone just to get to know them, it changes hearts all the way around. You will start to see that the little things are what makes life beautiful.

Just a half an hour of your time could change a life forever.

And the life changed, just may be your own.

3k
3k
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.