little boy dressed as dracula

As the parent of a child with autism, there are things I just don’t experience the same way the parent of a neurotypical child might, and it can be disheartening. Though guilt rises up in me admitting this, when approaching some situations, I’ve asked myself, “What’s the point?”

In May, my husband and I had plans to take our son, who’s on the autism spectrum, to see “Frozen on Ice.” My son came down with something, and we took him in to see the on-call doctor who prescribed medication for him and then went on to say that we probably shouldn’t take him to the show. “He’s not contagious,” she said. “But it’s a better idea to stay away from crowds so he doesn’t pick up something else. Plus, he doesn’t really understand so he won’t know what he’s missing anyway.” I saw red and stopped listening, calmly excused myself, and made it to the car before my husband and I both shared tears over her tactlessness.

She said this garbage in front of my son. She had “known” him for about five minutes. And in that small amount of time, she determined what he could understand and what he couldn’t. She assumed.

I seethed. My son loves “Frozen.” He loves Bubble Guppies. He asks to go bowling and to go to the beach. He picks certain foods and avoids others. He’s not “stupid.” He’s not unresponsive. He’s alive and well, and he’s a person with likes and dislikes just like you and me.

So we took our son to see “Frozen on Ice.” And he watched. And he smiled. And in my head, I punched that doctor in the throat. Because on every level, human and professional, she was dead wrong.

Friends and family members jumped to defend me and shared in my anger when I posted about the situation on Facebook. They supported me and commented on all the pictures of William clapping along with his favorite “Frozen” songs. He wasn’t 100% himself because of his ear infection, but he had a couple of days of antibiotics in him by the time we went and damn it, we were going to “Frozen” on principle alone at that point.

One of my friends genuinely asked me via private message, “Would William know the difference?” I thought about it. He had never been to the Amalie Arena. He had never seen any show on ice. He had never seen a person ice skating, come to think of it. That had nothing to do with autism, though. So I told her he understands we are seeing “Frozen.” I told him it’s in a big arena. I told him we’re going with his aunt and his daddy. He could think we’re just going to watch the movie. But couldn’t any 4-year-old think that? Any child might not be able to picture or grasp something brand new to them. And I like to think even if he couldn’t picture the entire setting, he was looking forward to it.

I think people, like this on-call doctor, often believe there is no point in attending big events or attempting to celebrate holidays with children with special needs. Because they don’t react the same way. Or they can’t experience it in the same way. But this is funny to me because how many people do you know who take their infants to Magic Kingdom to meet Mickey Mouse, something that a barely walking child will have zero memory of? How many spend hundreds or thousands of dollars on Christmas gifts for a child who will forget the toys and play with the boxes? How many parents and grandparents take toddlers to the zoo, pointing out animals and trying to teach them new words even if they’re distracted by other things? How many of us throw Pinterest-inspired first and second and third birthday parties that are really more for the invitees than the guests of honor?

Here’s the thing: memories aren’t just for the child. They’re for the parents, too. We do these things to see our children smile, sure. We do them to build our families. And we do them to make ourselves happy, too.

Every year, I’ve selected William’s Halloween costume. I remind him how to say “Halloween,” “trick or treat,” “pumpkin,” and other seasonal phrases. But it’s hard repeating myself year after year. I shouldn’t be teaching my 4-year-old to say “trick or treat” when that was all he could say two years ago, right? It’s hard. But you know what? He is what we have. He is who we have. His abilities are progressing every year. So we embrace it.

He was an astronaut. Then Jake and the Neverland Pirates. Then Danny Zuko from “Grease.” Then Albert Einstein. This year, because he loves watching baseball — specifically, the Tampa Bay Rays — I decided to buy him a Chris Archer jersey, find some baseball pants and cleats, and make him a Tampa Bay Rays player. I knew he would like it. I’ve enjoyed making those memories, not just for him, but for me and my husband and our family members and our hundreds of Facebook friends who think William is pretty badass.

But this year, I faced a couple of obstacles…

One of my friends asked me about William picking his costume. Though I’m pretty open about our challenges, people — out of both ignorance and sheer curiosity— ask questions or make comments that remind me that we’re different. I got sad. Would he ever pick his own costume? Should we even try? What’s the point?

Then, William all of a sudden developed a sensory issue with button-up shirts. I started worrying that the jersey thing wouldn’t happen. He wouldn’t wear it. Should I even try to get him to wear it? What’s the point?

On Labor Day, my husband and I took our son for a ride to the Spirit Halloween store. I thought maybe, just maybe, he’ll walk up to a costume that catches his eye.

Wrong.

My son, like always, wanted to run up and down the aisles over and over again. He wanted to push the button that awakened a screaming banshee hanging from the wall over and over and over again. He wanted to see the red lights on the zombies and the smoke coming out of the wolf’s mouth.

I sat on the floor of an aisle and texted my best friend while my husband chased my son. “There’s no point,” I sent her. No point in asking him to pick a Halloween costume. While little boys and girls around me pick their Teenage Mutant Ninja Turtle and Elsa costumes, my little boy repetitively pushes buttons and runs in circles. Oblivious. I spiraled. No point in Thanksgiving. No point in Christmas. No point in Easter. No point in birthdays. He doesn’t even notice. I felt tears coming.

Then a text message came in.

“He’ll get there,” she answered. And she was right.

I stood up, put on my bravest face, and walked toward where my husband and son stood. I was determined to try, and I was determined to not fall apart if my attempt failed.

I took my son’s hand and said, “William, first we need to pick a costume. Then we can push the button.” He said, “Push button.” I said, “First, let’s pick a costume.” And I had an epiphany. Choices. Too many choices.

I walked up and down the aisles and selected things he would recognize. “Look, Will, it’s Woody from ‘Toy Story!’” I said. “Cowboy,” he said. “Look, it’s Superman!” “Superman!” he repeated. “And this is Dracula from ‘Hotel Transylvania.’ We watched that night.” I did my best Dracula impression,

“Dracula bleh, bleh, bleh.” And he laughed. “And this one over here is Hiccup from ‘How to Train Your Dragon.’ He’s kind of like a knight because he’s wearing armor. We’ve seen both of those movies.”

I put all four costumes on the floor. “Do you like any of these?” I asked him. He pointed. Pointed with his finger. Which he never does. Anyone who has a child on the autism spectrum can understand the celebrations that come with seemingly meaningless milestones like this one. He pointed at the vampire costume and said, “Dracula bleh bleh bleh!” And he smiled.

He picked his costume, guys. For the first time. He probably didn’t pick it like other kids might. But he picked it.

We did the parent thing and put the shirt, pants, and cape on — just to make sure — which he yanked a couple of times, and then we distracted him by giving him what we promised: the chance to go push the button to make a monster scream.

Either way, he ran through the store, his Dracula cape flying behind him. He pushed the button, flapped his little arms excitedly, and left the costume on for another 20 minutes. It’s a winner.

Sometimes, it seems like there’s no point. It seems like he won’t understand. It seems like we can’t experience the “normal” things. But really, there’s always a point. Always. Because he’s the point. And he’s a seriously cute Dracula… bleh bleh bleh.

little boy dressed as dracula

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It can often feel challenging trying to find a relationship. When you add on having difficulties with social interaction due to autism, it may seem impossible.

I recently experienced this situation with one of my mentees while we were discussing National Disability Employment Awareness Month in October. I asked my mentees to share five goals they have for in the next academic year and then five goals they have for five years from now. While many put down going to college, finding a place to live and landing a job, the majority of them also shared with me about wanting to find a partner.

One of my mentees in particular shared with me the hardships of dating on the spectrum.

“Boys are usually suppose to ask out the girls and that terrifies me,” he said. I looked at him with compassion as I used to be in the same boat as him as a high school senior getting ready for a transition that tends to come with a great deal of uncertainly. I thought about my experiences dating as someone on the autism spectrum when I was his age. I always had to be the one to approach a girl, whether it was about asking her out on a date or to be my girlfriend. Although it didn’t feel like the sensory overload experiences I had when I was younger, it felt like another overload to me.

While we continued our conversation he asked me why he was always the one who had to put himself in the situation. Why, if he established a rapport with a girl who was interested, couldn’t she ask him out instead of the other way around? He then dropped a bomb on me when he told me that he thought no girl would date him because he has autism…

I blurted my response out really quickly:

“Don’t be so hard on yourself. You are bright. You are gifted. And one day, someone is going to love you for exactly you are. When you find that right person… it will work, regardless if you ask her out or she asks you. And it will be wonderful. ”

I meant that. Every word. You see, my mentees are smart and have amazing interests. That’s why I know, when they find someone who has those similar interests they will be able to find a confidence in themselves that they may have never understood they had, and be able to thrive in relationships. Regardless of social quirks and being shy at times, each one of them has someone out there for them.

What I hope for his future is that any girl out there will take a chance on him, much like I hope any girl out there today would take a chance on me. Ask him out on a date, be there for him, and see what happens.

For those out there searching for love, it’s out there and you can find it one day. Keep looking, and when that person comes who you connect with, take a deep breath and pursue what may be. There is something in you that only you can offer in this world. Never forget that.

In 2015 I released a book called Autism and Falling in Love based on my experiences trying to find love on the autism spectrum. You can learn more about the book here.

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

Image via Thinkstock.


“I have to say, you’re the most high-functioning autistic I’ve ever met,” my neuropsychologist said with a smile. “I’ve treated hundreds of people with autism and you really took me by surprise.  You must have learned to adapt very well at a young age.”

I was 37 years old and finally, after a lifetime of questions about why I struggled with things other people seemed to take for granted, here was an answer. Autism. The reason why I struggled to keep the “flow” in conversations.  The reason why eye contact felt forced, almost painful at times.  The constant sensory overload, the barrage of smells, sounds, and light. The prosopagnosia which caused me great embarrassment in my professional life as I struggled to remember colleagues’ faces. The stimming I cleverly learned to hide by the time I got to high school, aware that my teachers and other kids thought it was odd. Autism. Finally, it all made sense.

“There’s not really much I can do for you,” my neuropsychologist continued. “You know, your autism may have been a problem for you when you were a kid and if we’d caught it then, we’d have some more options to help you. But as I see it, you’ve learned to cope very well. You’re holding down a job, a relationship, and you’re highly educated. If you want to continue seeing me to talk about your depression, you can. But I think you’re doing a great job. You are extremely intelligent and high-functioning.”

I sat there, stunned. I had finally received the answer I’d been searching for most of my life and at the same time I was being told there was no help available at my age. I had no idea what to do next.

I started by reading every blog and book on autism and Asperger’s syndrome I could find. I found it especially helpful to read about the experiences of women on the autism spectrum, as currently autism is still seen as a “boys’ club” with the disorder being 4.5 times more common in boys than in girls.  I learned that many people, like myself, had been misdiagnosed with social anxiety and ADHD before receiving the correct diagnosis.

Despite having this newfound knowledge about myself, I still struggled with the same issues as before. Talking to people was hard. I fumbled through conversations, never sure of how social interactions were supposed to work. I could fake it pretty well, but it took a lot out of me. I still felt as though everyone else had been given a copy of some secret Social Rulebook and I was left constantly guessing at the rules. My significant other continued to complain about my flat affect, never knowing how to tell what I was feeling. I tried to explain that oftentimes I struggled to label my own feelings and I couldn’t seem to force my face to reflect what I felt.

Even with a diagnosis, I still felt like an outsider in my own world.

I contacted my county’s board of disabilities and was told I was over the age limit to receive autism services unless I was “low-functioning” enough to receive disability. I contacted a private autism services agency in my area and was told they had no services available for someone my age. I called my insurance company to ask about available services and was informed that they do not cover any autism-related services for adults. More dead ends.

Yes, I am “high-functioning” enough to call agencies and my insurance company. Yes, I can hold down a job and a relationship. That doesn’t mean I don’t need help with certain things.

I don’t wear my “high-functioning” label as a badge of honor or take it as a compliment. Being “high-functioning” means I’ve learned to cope with my challenges on my own when help should have been available. Being a “high-functioning” autistic person has contributed to my “high-functioning” depression because I can  easily pass as “normal” in society. My challenges are, for the most part, hidden.

And ironically, being able to “pass” is just what society wants us to do.


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


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.

Image via Thinkstock.


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.

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