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When I Realized I Didn’t Need to Fit In as a Person on the Autism Spectrum

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After I was diagnosed as being on the autism spectrum when I was 15, my entire life began to change. People understood me better. And once I looked into the diagnosis, I understood myself better, too.

The diagnosis came when I was in the middle of high school, and I ended up having to transfer to a school that could better meet my needs. I didn’t graduate with my friends from the old school, which I had grown up with and knew very well. And by the time I entered the new school, I didn’t get much of a chance to form close relationships with the kids there before it was time to graduate.

College didn’t pan out at first. It reminded me of the days I struggled at my old high school. So I waited quite a while before I was ready to return. I just started studying Early Childhood Education in the fall of 2015, but I’m only able to manage one class at a time. It’s a community college, so I’m not living on campus, either. It’s difficult to find people to hang out with, especially when I’m focusing more on my work.

I’ve tried connecting with parents in the autism community. Some are open to hearing from me. I’m so grateful for that. However, I’m not actually a parent. So I’ve found some parents don’t want me to be a part of their groups.

Although I respect the views of others, I find that I can disagree with many others on the autism spectrum. I just seem to have a different opinion. I don’t feel like I fit in well with those groups, either.

For a long time, I have felt like I don’t really fit in anywhere. But then I started to realize that maybe I don’t need to fit in somewhere. Maybe I’m supposed to stand out and go my own way.

I have a job making picture communication icons for a special needs organization. I love it. It’s something I’m capable of, and I know that I’m making a difference. I’m working on my own, but I’m working. I’m also volunteering my time whenever I can. I help out in special needs classrooms, as well as a local sensory friendly program.

I’m not really a part of just one group or organization. I suppose I don’t really need to be. Sure, it’s tough when you choose to go your own way. It’s hard when you don’t feel like you belong. But I suppose that’s what being different is really all about.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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How Doctors Can Make Appointments Better for People on the Autism Spectrum

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A reader recently sent me a question about meltdowns. Mary, a healthcare professional, shared that one of her patients had experienced a meltdown while she was working with him and she wanted to know what she could have done to help.

She was worried she had somehow contributed to it.

Meltdowns often stem from overload. Meltdowns are different than temper tantrums because they are generally triggered by something —  sensory, transitions or anxiety, for example  —  and reflect an emotional overload response.

They can appear to take place without warning (because others are not aware of the emotional build-up prior to the meltdown). They can be violent and long-lasting.

In Mary’s situation, the overload could have been from something touching her patient that made him uncomfortable, a persistent unfamiliar sound some might not pay attention to, a strong smell (maybe an antiseptic cleanser), his not knowing what to expect next in an unusual situation, difficulty in being responsive to someone he didn’t know, or some or all of those things combined at the end of a long day.

After explaining to Mary there was likely nothing she could had done to end the meltdown, other than first ask how she could help (which she did), and then quietly support both the child and parent while the meltdown lasted (which she also did), I suggested a few things she could do for her patients on the autism spectrum to help prevent meltdowns.

For example, a visit to the office before the appointment day might be helpful to instill familiarity before the date of the exam appointment.

Other suggestions included:

  • Scheduling appointments for patients on the spectrum for times when there are no other people in the waiting room
  • Not keeping the patient waiting, even for a short period of time  —  if there is paperwork to be done, have it done via mail or email before hand
  • Staff being thoughtful of their sensory impact while the patient is there  —  being aware of the sounds they are making, their movement, the smell of food they just microwaved, wearing perfumes, etc.
  • Reducing or eliminating fluorescent lighting (the flickering and hum can be aggravating)  —  maybe adding some incandescent or LED lamps available to be turned on when patients who need them were there

author's child at doctor After the patient is brought into the exam room, the healthcare professional can:

  • Explain the exam in detail before starting  —  let the patient explore the room, touch things (as appropriate) and ask questions.
  • Ask the patient or parent ahead of time what comforts them (I used to have my son sit in my lap for eye exams to reassure him; at the dentist we sometimes use the lead apron for x-rays as a weighted blanket during exams). Invite them to bring comfort tools and to use them.
  • Take your time  —  some people on the spectrum can sense impatience or being rushed, and it can add to the overload.
  • Ask the patient how they are doing and if they have any questions. Don’t be dissuaded if the patient isn’t verbal  —  many nonverbal people on the spectrum can still communicate very clearly.
  • Wait for an answer  —  use the 8 second rule to allow the patient a chance to engage the speech centers of the brain.

The patient may stim to help manage feelings  —  this is an important self-management tool. Don’t stop them from doing it.

If the stimming interferes with the exam, ask if you can trade off  —  a few minutes of stimming, then a few minutes of exam, then a few minutes of stimming, etc. This cooperative understanding might even reduce the need to stim.

I strongly suggest reaching out to adult patients on the autism spectrum and asking for their advice on how to make their healthcare appointments more comfortable.

Other healthcare professionals who specialize in serving patients on the autism spectrum can also be a resource to learn how they structure their practices, set up their offices and generally support their patients.

What suggestions would you make to healthcare professionals to make appointments better for people on the autism spectrum?

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness?  Check out our Submit a Story page for more about our submission guidelines.

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The Game I Use to Explain the Challenges of My Son With Autism to Those Who Don't 'Get It'

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I was talking to some friends the other night, and we were discussing my son and his autism. They were trying to figure out why Soren knew certain things one day but not the next, or why he would progress in certain areas and fall behind in other areas. I explained in the technical terms, and they didn’t quite understand. So I gave them my best analogy for it, and it seemed to help them understand a lot, and so, I would like to share it in hopes that it may help some of you.

Do you remember the old game Jenga? The one with all the little wooden, rectangular pieces you would stack in a tower, then have to remove one from the bottom and put it at the top without making it fall? You can think of my son like a human Jenga tower. You see, Soren is a very smart boy and is eager to learn. He wants to be able to do all the things his peers and elders do, even if it can be difficult for him. So he will practice and practice until he learns a new “trick.” (That trick may be running, learning how to throw a ball, learning how to make an unscripted sentence, etc.) Then, when he masters this new trick, something else may fall behind, or he might forget things he already knew. This is the metaphorical removing of the lower block and replacing it on top.

And along his way to learning new “tricks,” we encounter lots of meltdowns. Maybe he can’t master the art he’s going for, so he melts down. Maybe he did it incorrectly and someone corrects him, so he melts down. Maybe on the process of learning this new trick, he forgot something important to him that he once knew, so he melts down. These meltdowns are the tower shaking, that heartbreaking, breathtaking moment when you know it’s about to fall, and you panic. Do you try to fix it? Do you let it fall? Or do you sit there and watch as the tower shakes and leans?

Then, after he’s learned so many new things and forgotten so much old information, he can plateau or appear to stop learning anything. This is like the time when the tower falls. You see, all that information has fallen away from him, and he has to shut the world out. Then, he can relearn the things he needs to know in his own time and rebuild his tower, and then the game starts over again.

This may or may not be true for you, but this analogy helped my friends to understand so much more about what it is my son goes through on a regular basis. I only hope this helps someone else to understand as well.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

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Why I Write as a Person on the Autism Spectrum

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Growing up, I was always writing little poems or stories and even some songs. They weren’t always the best, but I enjoyed it. Writing was fun. It continued to be a creative outlet until one year in high school.

I was still undiagnosed as on the autism spectrum, but the teachers and staff were aware something was different. Everyone — except for my English teacher — realized I was beginning to struggle. This person just didn’t get it. I was so intimidated. Instead of learning, I began to fear writing.

In fact, I stopped writing. I stopped enjoying it. Every time I went to type, the page remained blank. I would see red marks all over every paper, picking apart each error until there was nothing left of my own but my name at the top.

I eventually got through this class but not without scars. I continued to dread writing. I saw it as a chore and something I was “obviously” incapable of.

Then I was officially diagnosed as being on the autism spectrum. And although at first I didn’t really think much of it (I hadn’t changed), I noticed others began to understand me more. They began to listen when I tried to tell them I needed help with things. I looked into more of what autism was about and something clicked. I wanted to help people understand what my life was like as someone on the spectrum.

Finally, after a few years of being afraid to write, I was about to explode inside with all of my thoughts and feelings about autism that had been building up. I went to my computer and created a website. Then, I decided to make it a blog. At first, I was worried I would make mistakes or it wouldn’t be “good enough.” But my writing didn’t have to be perfect like my teacher had wanted it to be. It just had to help people. I started to write about what my life on the spectrum was like. I continued this blog for about two years… and then turned it into a book.

Erin with her book, 'I Have Asperger's'

I am a writer. I may not write in the way my teacher had wanted me to, but that doesn’t mean I can’t write. I’m a published author. And the best part is that I use my writing to help people.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

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When My Son With Autism Said, ‘I’m Not Very Good With Words’

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My son Ryan is trying. He is trying so hard. I swear I can almost see him searching through the files in his brain.

These files of his seem to be scattered in no particular order, which makes retrieving the information within the files an arduous task. More often than not, he gives up, but on this day, he kept searching. As the words scrambled and cluttered on his tongue, I reminded him to take his time and that I wasn’t going anywhere.

Kathy Hooven’s son, Ryan.
Kathy Hooven’s son, Ryan.

Ryan finally found the school file and shared what happened in school with me. Then, exasperated by his efforts, he looked out the window and sighed, “I’m not very good with words.”

I quickly assured him he’s awesome with words. I reminded him how amazing his brain is and how he can find the right words from a movie, television show or YouTube video and make those words fit just the right conversation.

I told Ryan that although my brain files seem to be more orderly and “words” seem to come more easily for me, my brain can barely remember what I ate for breakfast that morning, let alone repeating the perfect phrase (or script as we like to call it) for a conversation.

We’re both good with words in our own unique way.

Ryan didn’t look convinced. I wanted him to understand that even though he may have heard those words somewhere else, they’re still his words and part of the way he communicates, and he is indeed good with words. So I gave him some perfectly awesome examples.

I asked him if he remembered when we were driving around Grammy and Pappy’s town, looking at all the old Victorian-era mansions, and I was “oohing and ahhing” about the size, and in his best Shrek voice, he said, “Sure, it’s big enough but look at the location.” We all laughed until we cried (him included). His words were so good that I almost wrecked the car into one of those Victorian mansion’s fences, which wouldn’t have decreased the value of the mansion since, according to Ryan (and Shrek), it’s all about location, location, location.

He smiled. A little.

Then I reminded him about the time we were eating dinner and asked him if he liked the cake I made for dessert. In his near perfect Cousin Eddie impersonation from “Christmas Vacation,” he shouted, “This is goooooood!” Again, he finds just the right words at just the right time.

He smiled again. Bigger.

I asked him about the time at the beach when we couldn’t decide where to eat dinner, and we wondered what he wanted to eat. Suddenly, Jim Carrey’s Fire Marshall Bill character was in the car with a “He’s cooking fishsticks!” quote. And then we knew just what you wanted to eat. Those were good words that made us all giggle.

He laughed. Quietly.

My favorite was when we saw a rainbow and my daughter Emma said, “Water plus sun equals a rainbow.” And Ryan piped up and replied, Rainbows are a result of refraction of moisture and light in the air,” sounding just like his favorite cartoon character at the time, Gumball. Those words were so good that Emma and I had no words, which never happens.

He laughed. Louder.

And then I reminded him of something he was too little to remember. Once when we were snuggling in his bed, he wrapped his arms around me and told these words that were so good they went straight from my ears to my heart: “I wish you were a human who could live a thousand years.” Those were his words, and they were beautiful. You are good with words, Ryan.

He grew silent. Again.

Worried I hadn’t proved my point, I continued with more and more examples of times he was good with words and how those words — those scripts — were his way of communicating and that my words are no better, no more effective, than his.

Ryan perked up. He sat up higher in his seat. Then suddenly, it seemed as though his brain files had order. Ryan gave me this script and that script. He used this voice and that voice. He smiled. He laughed. He believed.

As we approached the house, knowing the ride and this conversation were quickly coming to an end, Ryan never said, “Thanks, Mom. You’re right, in my own way, I am good with words.” But he didn’t need to because his smile and his Fire Marshall Bill voice as he opened the door and yelled, “Let me tell you something,” said it all.

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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3 Words That Helped Me When I Thought I Let My Son With Autism Down

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I got lost heading back home from a meeting recently. It would have been fine, except I had to be home to meet my son Dominic when the school bus dropped him off. I thought about calling my husband, the bus company or one of my friends to help me, but in my mind I thought I could make it home before Dominic.

I knew the bus driver wouldn’t leave him at our house alone because I signed a form at the beginning of the school year saying we wouldn’t permit that.

Cathy B. with her son, Dominic.
Cathy B. with her son, Dominic, who has been riding the bus since he was 3 as seen in this photo. He’s now almost 12.

But what if it was a different driver and he didn’t know to do that? What if the driver didn’t know Dominic is on the autism spectrum and has epilepsy? The feeling of fear was beginning to set in as I continued to drive towards our house. I didn’t have the bus company’s phone number or the bus driver’s cell phone number. I could have stopped on the side of the road to look it up, but again, in my mind, I thought I could beat the bus home.

When I got home, it was a full 10 minutes past the time Dominic is normally dropped off. Neither Dominic nor the bus were at our house. Now panic started to set in. For a split moment, I had no clue where he was. Oh my, that was a feeling I hope to never have again. I ran inside and checked on my home phone for a message from the bus company or the driver, but there wasn’t one.

I immediately picked up the phone, called the bus company and they said, “Is your son’s name Dominic?” I said, “Yes.” They told me the bus driver kept Dominic with her as she finished her bus route and would drop him off momentarily. Whew. I was shaking and had to sit down. As the bus pulled up and Dominic stepped off, all I could do was profusely apologize to the bus driver and tell Dominic, “I’m sorry, I’m sorry.”

I was beyond distraught. I felt like I had let my son down. I spent the next several hours rehashing the event in my head. What kind of mom was I to not have been there for my son with special needs? What kind of mom does that?

During my regular evening conversation with my dad, I kept telling him about what had transpired with the bus. After about 10 minutes, my dad said, “You’re only human.” Wow, that certainly helped me put everything back in perspective.

I try so hard every day to be everything to everybody that I don’t always cut myself enough slack to make mistakes. Just those three words, “You’re only human,” helped me realize I could forgive myself. It’s OK not to be perfect.

Sometimes as a caregiver, it’s hard to step outside of ourselves and realize that, yes, we’re doing a great job, and once in a while, things like not being there for your child’s bus may happen. It doesn’t mean you don’t love or care any less about your children with special needs. It means you’re human.

Follow this journey on Bountiful Plate.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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