blurry arm with child peaking through

Our 10-year-old autistic son cannot yet read, write or tie his shoes. We wait breathless minutes for him to say a word or phrase that marks the highlight of his day. How desperate is the family whose autistic boy disappears, is found hours later, and cannot retell where he has been?

The language is all there, wrapped inside his brain. He can tell his best friend, Watty, a Playmobil doll, everything. His smile hangs through Bugs Bunny, he falls on the ground laughing when we use an app to make our family dog sing. He hears, processes, and understands the world all around. He categorizes the minutest of details. But ask him in what country or which street we live on and he cannot tell you. Ask him what “two-plus-two” is and he will say, “two.”

However, give this boy a camera, heavy and sturdy, and walk with him through a festival or a market or on a family trip and he will see things no one else sees. As a father who is terrible at photography, I do not instruct nor guide, only make sure that he watches where he’s going. My son will photograph patterns, dizzying imbalances, everyday objects. He will also document vendors on cell-phones, children alone, people in active solitude. This is how our 10-year old boy with autism records the world he sees.

All photos copyrighted by K.K. Raschke. More photos can be found on Instagram.

blurry arm with child peaking through

little boy sitting outside a bouncy house

inside a grocery store

watermelon in a bag

couple sitting on a bench

little boy holding up a placemat

base of a tree

art installation

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One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”

Unfortunately I cannot answer that question.

The decision to seek out an autism diagnosis is a personal one, and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.

Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.

I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my autism I was not ready to be diagnosed right away.

At first I was in denial and did not understand autism. I was not ready to talk to a psychologist because I was still lying to myself that my challenges were nonexistent or that there was some other explanation for them. Autism seemed so final; I was not ready to accept it.

When I started to think about diagnosis I quickly realized there was a limited pool of doctors who were qualified or even had experience with adult women. None of the doctors I found took my insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.

Getting an adult autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the autism specialists are out of network, insurance companies will often leave you with the fees.

Before I started reading about autism and talking to other Aspies I had a hard time describing the feelings and things going on inside my body. Reading about autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.

I have alexithymia. It is part of my autism that makes it hard to describe my autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel, I don’t know. Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.

People told me the wrong things about my feeling sometimes, and because of my alexithymia I believed them. Some of my feelings and emotions got confusing. I needed to untangle this mess before I could accurately talk to a psychologist about my autism.

Once I had finally straightened all of those things out I felt like I was ready for an autism diagnosis.

I journal a lot, and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.

I took a 10-page paper to my psychologist explaining my life story without using any of the autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)

The doctor tested me, and I answered her questions honestly. I was extremely nervous the entire time, afraid she would come back with a wrong diagnosis.

After our first meeting I had time to think on her questions and sent her another five-page paper further explaining things I could not express face-to-face.

The way she had asked about stimming had confused me, and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)

If you can get your doctor’s email address or bring in typed papers I would strongly recommend doing so. Because I take in information and do not process it right away, sometimes on-the-spot conversations are impossible. I made a point to mention this to my doctor.

Tell your doctor everything  you have trouble with. Make a list.

Autistic burnout (sometimes called “autistic regression”) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.

In the end getting a diagnosis was right for me when I started having trouble coping with the “real” world.

My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.

Now that I am diagnosed I can ask for things – small things that were refused before – and people are supposed to give them to me.

I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.

Follow this journey on Anonymously Autistic.

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I was having a deep conversation (via Google Hangouts instant messenger) with a close friend about my autism. He made a comment that he did not see autism as a disability, but more as an alternate way of thinking that is not serviced very well by the modern education system. I agree – partially…

Quickly I realized that no matter how hard I tried, there was no way I could accurately explain or convey the parts of my autism that truly “disable” me. Searching the internet, I quickly found a few articles with other Aspies who had attempted to explain what I currently could not – the negative things that neurotypical people have a hard time comprehending.

“What does autism feel like?”

In that moment I was completely unable to explain.

The most disabling part of autism (for me) may be its invisibility and my status as “high-functioning.” Everyone expects me to do OK. I am smart and use my ability to pick up on patterns to get ahead in the world. I am one of those “gifted” Aspies, so my autism must be a gift right?

My good days are amazing, but on my worst days my sensory overload won’t let me out of bed. Currently I am averaging about three really bad days a month. They hit at random and stop my world in its tracks.

People can’t tell when I am having sensory problems. Some days are worse than others, and most days I am in at least mild pain at all times. The lights hurt my eyes and head, smells make me gag, small sounds nag at me constantly, I walk into walls, trip over things, and sometimes miss my mouth when I eat.

I miss many things in most conversations. I am awkward, weird, and my intentions are often misunderstood. If someone is not smiling or looking pissed off I can’t read them – unless I know them very well. Normally I have no clue when I’ve offended someone.

Autism feels like I am out of sync with the world and its people. I am alone in a lot of ways. That may sound sad, but honestly I am happiest when I am alone with my own thoughts.

Below are some of the items I found while researching how to better explain sensory overload.

I can take no credit for anything below.

1. Lori Sealy, a Mighty contributor – “My Answer to the Question ‘What Does Autism Feel Like?’,” talking about her sensory processing difficulties.

“My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.”

2. “One Guy’s Opinion: What it feels like to have autism as an adult” by Esther

“In general…

  • Before you know you have it, you simply assume that you have an odd personality.
  • After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

  • You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
  • You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
  • You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.

Video Simulations to Help You Experience Sensory Overload

1. “Carly’s Café – Experience Autism Through Carly’s Eyes”

Carly Fleischmann is a nonverbal autism advocate and YouTube talk show host. She is amazing. I strongly recommend you check her out.

2. “What it’s like to walk down a street when you have autism or an ASD”

More great videos on Craig Thomson‘s YouTube channel.

 3. “Autism: Sensory Overload Simulation

Check out the streamofawareness YouTube channel for more.

4. “Sensory Overload Simulation”

More from WeirdGirlCyndi on YouTube.

Follow this journey on Anonymously Autistic.

Image via Thinkstock.


Have you ever been in a situation where your child won’t wear clothes with tags on them due to sensory issues?

This is something my parents can relate to as well. Growing up on the autism spectrum, one of my biggest challenges was having a speech delay until I was 3. Once I began to start talking, one of the things I often shared with my parents was the uncomfortable sensation of shirts with tags. They would often have to cut the tags off my clothes before presenting them to me to try on for the first time. If there was a tag on them, and I tried them, even if they cut them off after I took the shirt off, I would never wear it again.

That negative connection I’d have for certain clothes would continue for many years during my adolescence. As part of my early intervention plan, my parents started getting me used to different sensory activities that I’d do with my occupational therapists. I had a sensory brush that I’d use for a few minutes each day, starting by using it on my hands, then on my arms, legs and shoulders. This helped tremendously towards my sensory development.

I also loved wearing Hanes shirts when I was a kid because there were absolutely no tags. Being a huge Michael Jordan fan helped with my love of Hanes, as he became the poster celebrity for the entire Hanes brand from all the commercials he’d do over the years for them.

Today I can wear all types of clothes, regardless of tags. As a disability advocate, I advocate for our loved ones by asking local businesses to consider sensory-friendly clothes for our community. This advocacy has included asking businesses to go tag-less, provide soft, pleasing fabrics for their clothes, and offer Velcro shoe options for those who might not be able to tie their shoes.

For those reading this today, I hope you will be able to advocate for businesses to provide sensory-friendly options as well. These items are not only helpful for our loved ones but tend to be more comfortable for anyone. That is a win-win I hope more businesses will consider in the future.

For more on sensory-friendly clothing I’d recommend reading this article on freindshipcircle.org, “8 Online Stores to Purchase Sensory Friendly Clothing.”

A version of this post originally appeared on Kerrymagro.com.

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My 11-year-old daughter is on the autism spectrum, yet many of the difficulties she faces day-to-day are hidden. You cannot look at my daughter and “see” her autism. She does not stand out. My daughter hides her difficulties so no one else can see. She will power through her day, using strategies that have taken years to adopt. She will look you in the eye and smile and say “everything is OK,” but this doesn’t necessarily reflect her mood. 

She lives by her own rules and plows through her day trying to make sense of the societal constructs placed on her. Sometimes she gets it “wrong” and misjudges. She is not keen on unknown people and places or the unsuspecting reactions of strangers. Every person reacts to the world in a different way, and this does not make sense to her; it is not only confusing but scary. 

My daughter will obsess over every detail so she can prove to you that she can not only do something, but do it well! She loves to achieve, and will work at 200 percent just to show you she can do it. 

But all of this comes with a price. The thinking and plotting, the extreme concentrating and effort. The guessing and double guessing. All of this exhausts her. Her constant pushing to meet expectation takes her to the point where by she cannot give anymore. It can all lead to a meltdown. She doesn’t mean to be rude or aggressive; her nature is loving and considerate. But I understand that place she must go to time to time when she simply has had enough. 

I may not be the best mother all of the time. I find the change in mood and meltdowns distressing at times. But I have learned this is not my struggle. I see her uncontrollably upset, and I remind myself these are her emotions, not mine. We all live somewhere between “I’m fine” and “I’m really not OK,” but we continue to work towards our happy mediums. Every step we take to get there on our journey takes practice and effort, but I know she will find her balance eventually. Until then we plod along, aspiring for balance not perfection.

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I’m an adult on the autism spectrum. I drive my own car, and for the most part, I have many self-help skills and I speak just like anyone else. I work as a therapist with young autistic children. Due to the nature of my job, I am required to get a tuberculosis (TB) test every year. The test involves a needle, which is something I’ve had a severe phobia of for as long as I can remember. To be perfectly honest, I’ve always had a general phobia when it comes to medical procedures, even the painless ones. So, when it came time for my yearly test, my supervisor accompanied me to provide extra support. She and I have been close for several years, and she has been there to support me in many other ways, even before my employment. 

In the waiting room for my test, she tried to distract me with pleasant conversation. I was starting to feel scared, so I only gave short answers and never returned any questions. When they called my name, I slowly walked into the room, feeling even more scared than before. I began to sweat and felt tears coming, despite the fact that the needle hadn’t even been presented yet. Eventually, I was instructed to sit in a chair to get the injection. At this point, I realized I wasn’t going to get out of the test, and I actually had to do it. I began hitting myself and yelling to further delay the process. I plopped down into the chair, only to intentionally fall out of it a few seconds later. I landed on my knees and began to cry. I hit my supervisor and then began pulling on her arms. I felt like I couldn’t speak or even breathe, like I was drowning in my own fear. I was a hyperventilating, crying mess on the floor.

My supervisor took my hands, encouraging me to breathe slowly and use words to communicate. I was eventually able to sit back in the chair and was even able to express that I didn’t think I would be able to keep my arms still. I asked the nurse to hold my entire arm while she did the test and my supervisor to hold my other hand. It was over in less than five seconds, and somewhere in my head, I knew that’d be the case. 

If I’m so “high functioning,” why do I still engage in these harmful behaviors?

An individual with autism may have mastered many coping skills and emotion-regulation techniques, however, when highly escalated, these skills can be difficult for him or her to access. 

It’s like being on the 100th floor of a building with only stairs and needing to sign an important document. The problem is, all the pens are on the first floor. You know you need a pen, and you know how to use one, but when you’re up at the top, it’s difficult for you the access the pen and therefore, the skill of using it. 

Sometimes, when an autistic individual becomes highly escalated, he or she may engage in maladaptive behaviors such as self injury, aggression or elopement. Even though the person may have verbal or other communication abilities, he or she may have a hard time accessing them due to being so highly escalated.

Rather than hitting myself or my supervisor, I could’ve asked the nurse to give me a minute so I could take a few deep breaths. Instead of falling on the floor, I could’ve stayed in my chair. However, I was in such an escalated emotional state, I couldn’t access those skills at that moment.

Autism doesn’t go away when a person turns 18. Many autistic individuals will need ongoing support in some way at certain points. “High-functioning” doesn’t mean a person doesn’t need support. Autism affects everyone differently, and it’s OK to need extra help with certain things. 

I’m fortunate to have an understanding employer and a supervisor who cares so much about me. I hope someday autism services comprised of highly trained and understanding individuals are available to all who need them. 

Image via Thinkstock.

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