Illustration of people in park with city landscape

Bright lights, loud noises, my breath catches in my chest. I force it out, gasp it back in.

People everywhere, every one of them a threat to me. I feel the panic rising, getting stronger. Someone bumps into me and my heart rate jumps a thousand feet.

You can get through. You’ve done this before. It doesn’t have to end in panic. Just get though. Just get through. Just get through.

I can’t see. I see too much. I hear everything, the noises constantly growing louder. I can’t drown then out. My own heartbeat is agony; it’s so loud. My body isn’t responding. I try to walk to somewhere I can sit down; somewhere I can be alone.

Mom, Dad, where are you? I need you. I don’t want to do this. I’m alone and so scared. Help me. I can feel tears coming. I try to scream, but the most I can manage is gasping. The world is spinning. I feel myself falling, but everything is in slow motion. I sense my body hit the floor, but I don’t feel it. I don’t feel anything.

Nothing but panic.

I can’t see. I gasp in, in, in, in, but can’t breathe out. I feel hot tears streaming down my temples. Everything is spinning. I am screaming, but I can’t hear myself. I am aware of only one thought. I feel like I am going to die.

As a 17-year-old with autism and generalized anxiety disorder, every day is difficult, but some more than others. This is something I was born with. My life is hard, but rewarding.

I am an introvert, and what I call “me time” is necessary to my ability to function.

One of the questions I am often asked is, “How does autism affect your life?” 

My answer? 

I have a hard time in any public place, whether it’s a mall or the doctor’s.

Loud noises are extremely painful. I not only hear the noise, I feel the sound waves hitting my eardrums.

Florescent lights are a unique kind of torture. They flicker, not enough for most people to see, but to me, it feels like someone is hammering my eyes from inside my skull.

I hate it when people touch me, especially on my skin. The feel of someone touching my skin almost always feels so cold it burns me.

I have a large “personal bubble.” I don’t like people I don’t know well within five or six feet of me.

I can read people well, and most people are an open book to me. I can’t really explain it. It’s like trying to explain why you’re good at science or physics. It’s just the way your brain is wired.

I love animals, most of all horses and dogs. They are what I connect with best. I believe I can tell what a horse is thinking and if it is feeling pain anywhere in its body. I can open myself up to understand what is going on in their mind. I have been called a horse whisperer several times. I know that’s what it probably seems like to someone watching me with a horse. I wouldn’t know — I just know that when I’m with a horse, or a dog, everything feels right. Everything is in place, and I am completely calm. It’s the only time in my life when I have no anxiety. It’s just perfect.

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On January 20, my son was asked to write a letter to our new president, Donald Trump. It was inauguration day, President Trump’s first day in office, and to help the kids make connections from themselves to our new leader, she asked the class to pen a letter. Here is what he wrote:

Dear Mr. President

Congratulations. My name is Jack. I am twelve years old. I hope you will be an honest leader. Please build more schools and homes for the people who don’t have a home. I would like for you to make food for the hungry. Please be aware of the people you are leading. Think your decisions all the way through. Use expected behavior.

Thank you for listening.

My son attends a specialized program for children diagnosed with Asperger’s (autism spectrum disorder), ADHD and anxiety. His teacher emailed this to me because she was proud to see him work through the assignment using the tools he has learned. At first finding the right words was challenging. He had heard a lot of conflicting information over the length of the campaign, all those months of soundbites that permeated everywhere, and it is easy to understand how a young man could become scared and confused about our new leader. After a short time, he was able to work with his teacher to articulate his thoughts and hopes for our future.

Jack has learned many tools to help him navigate his academic programing as well as his social and emotional needs. He has a level of perseverance that is inspirational to those who know him. I read this letter back to him and he again expressed that it was hard to write it. As part of Jack’s diagnosis, he tends to see things in black and white terms, and although he has improved in this area, it is still a part of him. I told him how proud he should be that he worked through this letter. Jack’s words, his beliefs, and his dreams for our future, presented an opportunity for a deeper lesson: a plan for action.

“We don’t need to wait for the President, or anyone else for that matter, to make a difference in our community or in our world,” I said to him as we snuggled on the sofa. He nodded and kissed my cheek. My son has fears and reservations about our new president. It is my job as his parent to alleviate his fears and help him make sense of things that are troubling. It is also my job to empower him. He has done an amazing job at home and school learning, growing and advocating for himself, now he wants to see positive changes for others. I hope the act of taking action will help alleviate his concerns about other kids not having enough food or warm clothing to wear. He will be in control of creating the things he asked to see in our country.

Jack will be the change he wishes to see in the world…

I cannot wait to see where he takes us.

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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Sometimes it’s frustrating being an autistic person. Sometimes neurotypical friends and family members can have a hard time understanding me. I don’t blame them, they are not in my body, so they can’t feel what it’s like to have ears that are like microphones, and what it’s like to feel sick when I smell a certain scent (mashed potatoes for instance). I keep quiet about being autistic or if I’m feeling bothered by noise. I don’t tell people because I’m afraid that they will be upset.

Once I was in sensory overload and people wanted to help me. I wanted to talk to them, but I couldn’t talk. I was so overwhelmed by noise and anxiety that I lost my words. People in my life who aren’t on the autism spectrum also have a hard time understanding why I need “routine.” Routine is my way of having predictability, which reduces anxiety for me. If there are multiple changes, I get anxious. If there are too many changes, then there is a possibility of having a meltdown.

The best thing for me to do is to be patient with them, even if I am super frustrated or anxious. I have to realize they are not autistic. Some people in my life are starting to understand me. I try to explain what it’s like to be autistic in terms they can understand. Even just turning the volume down on the radio can be helpful for me.

I may not be understood all the time, I may feel frustrated, I may have sensory overload multiple times, and I may have anxiety. But I will keep pressing on. I want to develop my talents and enjoy life, even if life throws me a lot of curveballs.

Follow this journey on Ausomely Autistic.

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ABL Denim, which creates jeans for adults who use wheelchairs, has expanded their offerings to include jeans for children with sensory sensitivities.

Read the full story.


I remember writing a letter to a health professional about a lapse in communication that resulted in issues for me, and after the initial burst of energy, I came to the conclusion that the real benefit would be if mutual understanding could be improved, rather than just an improvement in consideration towards clients.

After I wrote this letter, I seriously started to think about the litany of doctors’ and allied health appointments I’d had throughout my life and how they’d brought me little benefit. I would go to the doctor knowing I was sick, having put off going because I could not afford the cost of the consultation. I would arrive at the doctor’s office and sit for eternity in the waiting room, looking at magazines that were almost as old as me, all the while trying to remember the reason I was there and what my symptoms were. Sound familiar?

Doctors’ offices can be a special kind of sensory hell. I have sat in long, thin ones where everyone kicks your legs as they walk past; I have sat in ones with what felt like 3,000 screaming kids and only one toy. I have even sat in a doctor’s waiting room and enjoyed his free dust, great for the asthma; it helped me forget the reason I came. It was such a confused visit, during which the doctor treated me for asthma, spoke about some surgery I didn’t need and offered me a cigarette.

A problem for me all along was that I would get a doctor’s appointment, go to the doctor, the doctor would ask questions, I would answer the questions, and I would leave — but really I’d be no better off. Family would ask if things were OK, or what did the doctor do or say. Mostly my answer would be “I don’t know,” or “Nothing really.” On some occasions, friends and family would listen and say, “But you went to talk about this, and you said the doctor talked about that. What happened?” I could never really come up with a concrete answer; the whole process always seemed so imprecise, so ethereal to me.

So what was going wrong? For what reason was I not getting the help I so desperately needed for years? What was wrong here? I started to watch medical shows to self-educate to see how other people were getting assistance where I could not. I learned a bit, but not a lot. I suppose I should say I learned I may have thrown away some perfectly good doctors and other allied health professionals in my quest to get help.

My struggle with communication is exacerbated by my difficulties with theory of mind and my problems with executive function. Theory of mind, as it relates to my autism, can be characterized by an impaired understanding of another person’s understanding, or their perception or cognition. To give an example, when I was young I believed myself to be the only soul in existence who could hear themselves inside. I thought others only reacted to each other. As an adult, I know other people think and have experiences, but I do have those moments where it all falls down, and this can include going to see health professionals. Executive function, as it relates to me, affects my ability to pay attention, to listen, to remember in the short term, to be organized, and especially to meet deadlines. Having strong deficits in executive function for listening, paying attention and working memory impacted the outcomes of the consultations with my health care providers, because I could not amass any information, and what little I had, I could not organize in any meaningful way.

I thought about the outcomes of years of failed consultations, and being a visual person who is able to replay the consultations like a video cassette, I thought I should do this and see what I might learn. I like to pick days almost randomly at times and just replay them; it is a nice thing to do and I enjoy it. I found replaying doctor and physiotherapist visits was not very stimulating; however, I learned some things. In one consultation, the doctor knew I had studied paleoanthropology and was probing me with questions relating to bones of hominids, while I was paying for a consultation. I left with no treatment and no answers that time. That is one of many examples of me being off topic or tangential, though I try and keep it under control.

Another discovery from my reflections was that I was not clear in my communication. I actually mean a couple of things by this. Firstly, I did not have clear communication internally. I do not always understand where my pain or ache is, or if it is still hurting, so please do not talk to me about that Likert scale. Secondly, I don’t clearly express that I have pain, that the pain is severe, and it seems I do not have a working vocabulary that other people can comprehend in order to understand what my pain feels like and where it is. Thirdly, I don’t understand that the health professional doesn’t understand me. The concept of “express and then query understanding” has been completely missing for me. Conversely, when a health professional has tried to seek understanding with me, possibly because of my autism, I am more likely to answer “Yes” without comprehending their questions.

I cannot begin to express how important it is to understand a question that a health care provider asks. If you do not understand, or like me you tend to immediately forget someone’s question, it is crucial to express that you have difficulties understanding. Then ask the health provider if they can explain the question differently, and keep doing this until you understand what it is they are asking. Many times they will accommodate this. Do not be shy. The best outcome is that you get what you need and they learn from the experience. There really is no embarrassment in asking or re-asking for clarification. You may need to resort to alternative means of communication and get them to write down the question. It can be dangerous to your health for the health provider to have the wrong information, not to mention far more inconvenient to you to have to clarify at a later date. Your health is literally in your hands, and health providers act with knowledge and permission that you provide to them.

So this led me to the realization that some of us on the autism spectrum may not be particularly good at describing where it hurts, or how we are affected. Sometimes, for some of us, we have enormous problems describing just what is the exact health concern that has been troubling us.

Sometimes as an Aspie, I just don’t know that there have been contributing stresses and pain factors, because I simply may not be able to recognize them. In other ways, there are problems with getting the right kind of assistance when you do recognize discomfort or pain if you are not transacting with the “correct” vocabulary. It seems there are glossary “definitions” for certain kinds of aches and pains that are like a golden ticket to getting medical problems addressed. Once I understood and began to build a glossary, I was able to use words like “gripe” to explain my problems. Because of this improved communication, I was able to get attention for problems that I had not been able to get help for in years.

Doctors are not mind-readers; they can only know how you feel from what you describe, so a common ground in terminology is so very important. But what if both parties have a different understanding of a word? Or the autistic client doesn’t even know to use certain words? The doctor could be listening for words like griping intestinal pain, but be given “I am feeling the noise of machinery. It is burning without temperature, but I am not sure where exactly.”

I’ve found a mismatch in vocabulary can add months or even years to the process of diagnosis. Doctors are expensive, and the visits may not be frequent, so if you are able to, it is important to try and get some glossary words.

What if you are not a person who “gets glossary words”? Well, if you are stronger with your written communication than your verbal communication, then you could take your key symptoms and put them down in note form. Bullet point items on a note pad or on your smart phone, and take them to your doctor.

In my experience, most doctors will tolerate you reading symptoms to them; they are often interested in getting as much information as possible. How many of us have forgotten important symptoms to relate to the doctor because of the stress related to communication or being touched during a medical appointment?

It is a very real problem that people on the autism spectrum can fall into a cycle where they go to a doctor and leave with an unclear diagnosis, because the doctor is unable to understand the level of pain or symptoms, or even that there is a problem.

Some of us are perfectly able to speak on all of the issues, but in our own vocabulary, and only in our own heads before the medical appointment. However, when the time of the appointment comes along, we can be struggling for words, and the words we do use may not convey the impact to the doctor. So maybe the best path is to take as much supplementary information as possible.

The kind of supplementary information that has worked for me has been things like making symptoms tables, and drawing diagrams of the affected area and putting “pain lines” through the affected areas. You can make the “pain lines” thicker and darker for more pain and lighter for less pain, and place a legend on the diagram. You could take photos from magazines of people’s bodies or faces that indicate the area or expression of what you are feeling. In this way, you can point to something and say, “See this lady’s face? Well, I feel like that.” Or you can point to a picture of a person’s back from a magazine and say, “It hurts exactly here when I sit and tie up my shoes.”

You can take handwritten notes, you can make pictures, and you can take props or even a symptoms table, which includes answers to the types of questions you will face in the presence of a medical professional. I suppose the key thing is to make some preparation beforehand, so that you have some of these items ready to speak on your behalf at that critical time when you are with the doctor or allied health professional.

Please look after your health.

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