woman holding a basketball

As an individual on the autism spectrum, I have found many benefits to having a job. I understand this is a position that not enough autistics are in. I hope one day in the near future, all autistics will be able to find fulfilling work that stimulates and captivates their minds. I believe the relationship between autistics and employment is symbiotic. Autistic employees can offer many benefits, things such as persistence, attention to detail, and a genuineness that can be difficult to find. At the same time, the ability to work can come with many benefits to autistic individuals. Working has become so many things to me.

One of the first things that working means to me is an increased level of independence. This is multifaceted. With any type of employment, individuals gain some level of financial independence. Autistics are no different here. Beyond financial independence, I have also gained more independence in my daily life. It is up to me to get myself ready for the day and to get to work on time while managing other household responsibilities. Perhaps the most important facet of independence, to me at least, has been the independence I have found at my job itself. I have a unique job, doing video breakdown and statistical analysis for basketball teams, which comes with odd hours, varying schedules, travel and lots of sensory overload. Through my job, I have proven to myself I am capable of more than what many people said I would be. On a daily basis, I work on my own to complete assigned tasks to the best of my ability, going beyond what is asked of me.

As a result of my newfound independence, working means an increased level of confidence. I have become very confident in my ability to do my job as well as, or better than, anyone else. My confidence in my skills has increased as well as my confidence in my ability to compensate for my weaknesses. For example, although I am not very good at eye contact, I am confident enough that my work will speak for itself. I let my work speak for me, rather than my social skills.

Working, overall, means happiness for me. I don’t “love” much in life, but I do honestly love my job. I get paid to do what I love — watch basketball! I love that I love going to work every day. I love that I come home every day from work absolutely exhausted because I did my best. I have become a much happier person since gaining employment. The doom and gloom is gone and has been replaced by happiness and positivity. I am very thankful for this change! I am happy with my job and with my newfound independence and confidence.

Within all of what working means to me is how I got to where I am today. Undoubtedly, where I am is a result of my team, my support system. I am so thankful to have so many people who believe in me, especially my co-workers and bosses. Without these people, working could mean the complete opposite of what I have described here. For this reason, I don’t just want any employment for autistics. Individuals on the autism spectrum are worthy of fulfilling and meaningful employment and should not settle for anything less.

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Meltdowns can be painful, terrifying and embarrassing. I had one recently and thought I would break down what happened and how it worked up to what it became.

These episodes happen when my information or stimulation input becomes so intensely overwhelming that I am completely unable to function or interact with anyone. Again, for me they are painful, scary, isolating and sometimes dangerous. But they are not something I do intentionally or for attention. I hate them as much as anyone else might. I just wish some people would make an effort to understand it.

Two Days Prior

— I was not heard when expressing an issue.

— I was told something that invalidated one of my serious issues.

The Day Before

— My child threw several loud fits during the day.

— I went shopping and had a lot of new input.

The Day Of

— I overslept and did not keep my routine.

— I didn’t manage to eat early.

— I didn’t get a chore done, and could not get the energy to do it.

— A live-in person verbally triggered my guilt over the unfinished chore.

— An argument.

— And then the meltdown.

Here are the behaviors displayed leading up to the explosive episode, which must be noted.

Two Days Prior

— Mild stress communicated

— Less physically functional

— Increase in irritability

The Day Before

— More difficulty functioning

— Somewhat more irritable

— Distant from everyone

The Day Of

— Before the “Rumblings” Really Started —

— Depressed behavior (bedridden, sullenness, tiredness, distraction)

— Lack of interest in group activities

— Mild frustration with environment

— During the Rumblings —

— Aggressive behavior

— Vocal agitation

— Difficulty staying on task

— When the Alarm Behaviors Started —

— Hands held close to my person, twitching

— Pacing around the house

— Angry vocalizing

— Defensive behavior

— During the Actual Meltdown —

— Yelling

— Crying

— Escaping

— Demanding

— Hardcore stimming (rocking, touching my arms, pulling my hair)

— Seriously aggressive behavior

— Repetitive language

— Showy, aggressive activity

This is what happened and how I got to the meltdown level in my autism.

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Dear President Donald Trump,

As I write this, you have yet to release your new health care proposal, which would in effect replace the Affordable Care Act (ACA), something you’ve promised to get rid of since you began your campaign for presidency.

As I write this, I’m also watching my almost 4-year-old autistic daughter play a board game with her behavioral therapist and wondering how your new health care laws will affect her future.

On the outside, she may look like any typical 4-year-old little girl: She’s taking turns, following the rules, and asking her therapist for a high-five after every turn. But what you don’t see is that it took two years of speech therapy and a year each of occupational therapy, applied behavioral analysis (ABA) therapy and special education preschool to get her here. A year ago, my daughter would have had difficulty playing the game because she struggled with asking questions and following directions. And the year before that, my daughter only had 15 words.

We have fought every inch of every mile along the way so far to make sure she received all the proper referrals for every evaluation and therapy, because I knew the importance of early intervention therapy in the likelihood of her successful long-term development. We have been fortunate to have both a wonderful team of physicians and equally exceptional insurance along the way that have been an integral part of providing my daughter with the therapies she needs.

But our journey is just beginning, and there is a high likelihood she will need continued services for quite some time. There is no guarantee at this juncture that she will ever be free of the need for special needs services.

Like so many parents of children with developmental disabilities, we are reliant on insurance to be able to access these services. I know you’ve promised “insurance for everybody” and “to not have people dying on the street,” but for parents of children with special needs, it’s more complicated than that. One in 45 children in this country are diagnosed with autism spectrum disorder, like my daughter, and require special therapies and early or continued interventions to help them develop the skills to become independent adults. Because of the sheer cost of these therapies, they can become completely inaccessible without insurance coverage. The Affordable Care Act ensured those with autism would receive access to these habilitative services. Prior to the ACA, insurance companies would often determine these services weren’t medically necessary for those with developmental disabilities because they weren’t rehabilitative in nature.

What concerns me is that in your haste to replace what you view as a broken system even in its infancy, you may not realize that many of its provisions were working to help families like ours — families that depend on access to these services as part of our children’s well-being. I sincerely hope any new health care propositions meant to replace Obamacare will have similar provisions that will protect not only the future of my daughter, but the future of the millions of other children with developmental disorders in this country. Please don’t forget about them in your legislation. They may not necessarily be left “dying in the street,” but they would certainly be left behind.

Sincerely,

Ashley Kwiecinski

Mother and Advocate

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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In May 2009, I had a violent meltdown that lead to law enforcement and an ambulance ride to the ER. Upon arrival I was greeted by a screaming baby, which my ears could not tolerate. I covered my ears and began screaming in distress, and immediately I witnessed the ignorance, prejudice and abuse of my junior high and high school past crashing down on me in adulthood.

Several people were in the room asking questions like, “What’s your name?” “What meds are you on?” “Stop screaming, you’re scaring the lady in the bed next to you!” On top of this, the baby was still screaming, which I was reminded “isn’t its fault!” in a derogatory yell. I reminded the nurse through tears that I have autism and sensory processing disorder and cannot help my response, either. That brought a threat, “If you can’t be quiet, then we’ll have to give you Haldol. You can’t take Haldol? (I am allergic) I thought you didn’t want to talk to me. Why are you talking to me now?” When I refused to take it, she went to get security.

I picked up the phone and called my mom, remembering to dial 9 first, as I am familiar with hospitals. When my mom talked to the nurse, the security guards left. I reminded her it is her duty to know the basics of autism and not my responsibility to educate her.

After four hours, with my mom holding my ears each time the baby cried, the case worker came and spoke with me, made out a customary wellness plan, and then I was discharged.

How could this situation been handled differently? 

Simple.

If you are a nurse or any other member of the medical community, you know the first rule of medicine is do no harm where there is no harm. De-escalate the situation! Don’t make a bad situation worse by being sarcastic or yelling. Find out why your patient is in distress. Do what you can to make them as comfortable as possible (even if that means simply not being a jerk). Take your patient seriously. If they tell you they are allergic to a particular medication, listen.

The nurse I dealt with was reported to her supervisor. I can’t stress enough the importance of having an advocate to speak for you if you are unable. This goes for everyone. Someone in your family should have a list of your meds, your doctors’ phone numbers and a copy of your living will if you have one. This person should be a primary contact like a parent, grown child or spouse, and ideally he or she should live near you.

Lastly, report abuse of anyone on the spectrum. Don’t settle for just an apology. I’ve been thrown out of another hospital because they couldn’t keep me from using the chain of command. I chose to report the abuse I witnessed and personally experienced as a patient.

If you are interested in learning more about law enforcement training efforts to help autistic people, here is a police training video. If you need to report abuse, Google who to contact in your area. In Illinois, you can report abuse anonymously here. You can also report abuse here.

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Mom’s son with autism was given no-tie shoelaces because he was not able to tie his shoes.

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We recently went on a much-awaited and much-anticipated trip to India to meet our family. This was my son’s first trip in a long time — since he visited India three years back when he was a little over 4 years old. So I was apprehensive. For those who don’t know, from where I live, the journey to India can be anywhere between 20 to 25 hours long, with almost 16 to 18 hours crammed inside a plane. My son is on the autism spectrum, and my husband and I, on multiple occasions, used to get cold feet just thinking about the challenges that could arise. The long flight, the jet lag, the sensory overload, especially in terms of sound and a deluge of new faces… We were not sure how our son would respond to so many new experiences. Our fear was this might turn out to be a very negative experience for everyone. This is where we were completely wrong! If anything, this was a huge learning experience for us and a trip worth remembering. Let’s start from the very beginning:

The Flight

The most feared part of our trip. The long, arduous fight, tied up in a seat for an extended period of time. With the pediatrician’s recommendations, I was carrying a bottle of Benadryl. It could make my son a little drowsy during the flight and help him sleep through most of it. We did carry a few of his favorite toys as well — his iPad, his musical toy and a few straws — but we were pretty sure he would get bored of these soon and expected a meltdown of some sort. However, to begin with, we really did not need Benadryl. The dimmed lights and his body’s natural sleep cycle took care of most of his sleep. The rest of the time he enjoyed playing with his stuff, lying down in our laps, cozying up with us, and just getting our unadulterated attention. We all actually enjoyed this unusual family time more than we expected. Ideally, I would fret over his meals, but this time around I decided not to do that, and this helped ease the stress we often have around meal time. A day of disrupted meals was not going to affect his health. So long story short, the flight was a breeze compared to the apprehensions we had. We had a few rough moments, but then who doesn’t!

Lesson learned — something seems challenging only until you’ve tried it.

Jet Lag and the Saga of a New Bed

This is the part where, when everyone sleeps peacefully, you lie down and stare at the ceiling, and when others are up and about, you are walking in a daze. We knew the jet lag would go away in a day or two. What was a bigger issue was my son Vedant’s anxiety about sleeping in a new place. The light sleeper that he is, he would wake up suddenly, sometimes within minutes of sleeping, and throw up from the stress of sleeping in a strange bed. This went on for almost five to six days, during which none of us could sleep enough. Several times during this stressful period, we felt like taking the plane back home. But we decided to persevere. Instead of constantly trying to make him sleep, we tried to have more fun on the bed with him along with his little cousins. This helped make him feel safe and have a positive feeling about the bedroom. Soon he started sleeping better, and we were back on track.

Lesson learned — patience and endurance always pay.

Meeting Our Family

Amazing is how I would describe it. Vedant was not just affectionate, but also excited to meet his cousins. Back in the U.S., I’ve seen him around kids, and for the most part I’ve noticed him coil in a corner and keep away from everyone. However, I found him enjoying the company of other kids here. I believe this had a lot to do with how the kids interacted with him. They did not try to play with him, they tried to play like him. That got his attention and his interest. I saw him respond to a few of their questions, I saw the twinkle in his eyes when he was with them, and saw the child in him I have always longed to see.

This was so encouraging. There are ways to enter his world and to get his attention, and I learned it from little kids, who can so often be underestimated. I saw his cousins being proud of him and showing him off to their friends. I believe it made Vedant a more confident young boy who wanted to make his cousins just as proud. The extra attention he got from his family — uncle, aunts, grandparents — was phenomenal. He warmed up to them just as well. He likes deep pressure, so all the hugs that came his way only seemed to make him happy and seek more. The entire experience taught me so much about Vedant in terms of how to best work with him. He does not lack social skills. He just prefers a different kind of interaction. It’s us who may lack in our understanding of his needs.

Lesson learned — to know a kid, be a kid; there is no better way to do this.

A Whole New Setting

There was a lot that was new for Vedant during this trip, but he really took it all in his stride. The loud noises on the street bothered him, but he knew how to regulate himself instead of having a meltdown. Normally, a little bit of walking can wear him out. He would insist that we pick him up or else he would be cranky. There, we climbed more than 100-odd steps to visit a temple and had to go up a steep hill to see a waterfall, and he happily went along without complaining even once. Back home, we would not even have tried doing this.

I had believed that Vedant did not often notice us not being around. This was because, in the past, there had been occasions when his dad or I had to be away, but he did not really seem to look for us. So I was pleasantly surprised when he came looking for me in the kitchen, pulled my hand and said, “Mumma, come,” when he couldn’t see either of us in the room. I was so happy. I guess being in his “safe place” may not elicit his insecurities, but when he found himself alone in a new place, he felt the need to get one of us. This was such a great thing to know.

One of us, almost always, kept an eye on Vedant since it could be difficult for others to understand him. However, there were times when we got busy and let him be on his own. It was then we noticed him using his iPad’s TouchChat app for communication. Initially, we dismissed it as being random because he had never used it back home. However, over time we realized he was typing what he wanted to say, like going to the toilet, playing with a toy, or asking for a specific food item, and then he would come up to us and verbalize that. To say we were over the moon would be an understatement. We never knew he could use it the way he did. I strongly believe this happened because, unlike at home, our son was in a place where he did not know his way around, giving him the necessity to communicate using the app.

Lesson learned — sometimes we need to get out of our comfort zone to know what we are capable of.

There were many big and small revelations we had during our trip. A lot of what we had stayed away from doing in the past, we got to do back in India, especially because we knew we had a family around to stand by us. This gave us the confidence and the courage to try new things with Vedant that we had not tried earlier. This was my learning experience. For some, it could be a trip to a beach or a sleepover at a friend’s. Life gives us so many opportunities to learn and to rediscover; we just have to keep our eyes, ears and minds open for it. Our fears are our biggest enemies, and once we take a step towards facing those fears, there can be a whole new world on the other side. This trip to India was our family’s way of discovering what we are made of, and it has helped us see our son in a whole new light. He is capable of so much more than we could know. All our kids are!

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A version of this post originally appeared on Brain Droplets.

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