For so long growing up, I could never get my hair cut in a barbershop. Crowded places like that made me feel uneasy, the sound of scissors made me cringe and when hair fell after being cut, I’d shiver like thousands of little pins were stabbing me in the back of my neck. That’s why for several years I had hair that went to my shoulders. My parents were afraid even the attempt of a haircut would be too much for me because of my sensory overload.

Once I got to middle school, though, my parents and I needed a change. We started meeting with our friend in her house to have my hair cut and we never looked back. Being in quiet surroundings with someone I felt comfortable with did wonders. Years later I started going to a salon after building the muscle memory of dozens of successful haircuts from home.

As an advocate and public speaker on the topic of autism, I wanted to share several things I believe people with autism want you to know about cutting their hair.

1. When you give us a “game plan,” we will likely feel more comfortable.

When you are in the room with us, give us an idea of what we should expect. Will we need our hair shampooed beforehand? Will you be using more than just scissors, like a razor or trimmers? The more directions you give us, the more comfortable we might be. For younger kids, visual schedules are amazing at helping us get on track.

2. Cutting our hair may be completely different than the next person you meet. Don’t be afraid to think outside the box.

For my parents, it helped having someone cut my hair in house. For others it may be sitting on the ground with them while they play a game (see the story of a barber who went the extra mile for a boy with autism). The old saying of, “If you’ve met one individual with autism, you’ve met one individual with autism” rings true for cutting our hair, too. Playing up to our interests can go a long way.

3. Positive reinforcement and reward systems can go a long way.

Every time I got my hair cut, my family promised me something fun, like going to the movies or getting a treat. Getting our hair cut can be an overwhelming experience. Give them something to look forward to and it may help with some of the stress/overload they may be feeling.

4. Sometimes it might not be necessary to cut our hair right away!

Many kids on and off the spectrum hate to have their hair cut. Some children’s hair grows faster than others. Is their hair that messy? If a child can keep their hair longer for a little while longer, you may be able to ease them into the experience when they are older.

5. Make it fun so you can form a relationship and build that trust.

Regardless if you are a barber or cutting your own child’s hair, take some time to reflect on what your child enjoys the most. Maybe it’s a specific activity they enjoy or maybe it’s talking about a certain topic? For those who are nonverbal, maybe there’s a game they could play on an iPad if they have one.

Haircuts can be challenging for our loved ones on the spectrum, but they can be possible for some with the right preparation. Hang in there, and the next time they need a trim, make sure they know you are there for them the entire way. That may be one of the most important tips of all — to help your child have the best haircut experience ever.

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The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


I once had the following conversation with a psychologist:

“I am an autism expert. I know everything about autism. I read loads of books and I am autistic.”

“No you don’t, Lucy. You are one person with autism. You know a lot about autism, but that doesn’t make you an expert.”

Cue intense meltdown where I screamed and smashed things for over an hour.

I was 21 when that exchange took place and extremely stubborn. I was arrogant, had little to no understanding of other people’s views and if I disagreed with you, it didn’t end well! These days, six years, seven psychiatrists, five house moves, several assertiveness courses and lots of reading later, I would like to think I am less ignorant and less stubborn. I also realize that the psychologist was right. I am one person with autism.

This doesn’t make my voice irrelevant, though. Although I cannot speak for everyone with autism, I can advocate for them. Use my voice to educate people on all different types of autism. Tell people my personal experience of autism. Explain how poor the services and support available are. Tell them how I ended up going into care because no one would listen to my Mum’s concerns about my severe behavioral problems. Offer advice to service providers about how to make life better for this generation of autistic children and adults.

So no, I am not an autism expert, but I will always be an advocate.

woman giving speech using microphone
Lucy giving a speech

Follow this journey on A Lifetime of Labels.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

I’m not a fan of change. I like my comfort zone and keeping things “as is” because I feel comfortable with “as is.” I know what to expect from “as is.” So, when change comes along and rears its ugly head, “as is” goes out the blankety-blank window.

Yeah, change sucks. Sometimes. Not always.

No time is change more expected, more discussed and more debated than at the start of a new year, so I always jump on the change bandwagon…for about a week. When the calendar marks the end of one year and the beginning of the next, change is expected. Change is encouraged. We are all supposed to change for the better, thus having a better year than last. So, come January 1, I decide to change, too.

I’m going to change by eating healthier, exercising more, swapping screen time for snooze time, swear less, reduce my incessant need to please people and decrease my wine intake. Change, change, change. It’s no wonder I’m not a fan — change and I, well, we don’t jive, so I typically fail miserably.

I continue to eat Cap’n Crunch cereal for breakfast, binge-watch “Homeland” until the wee hours of the morning, skip the gym (sometimes I just totally forget I thought about going), swear like a truck driver, people-please to the point where I don’t remember what pleases me and beg my husband to stop at Total Wine while traveling. Promise. Fail. Repeat.


Merriam-Webster dictionary defines changes as “to become different; to become something else.” What if this new year I decide to not become different or something else? What if I decide to keep on eating Cap’n Crunch cereal for breakfast, forget to go to the gym (time and time again) and keep on talking like a truck driver? What if staying the same isn’t so bad (with the exception of all that sugar in Cap’n Crunch cereal)? What if I’m resistant to change? What if change is scary or bad? What if something becomes different and I want it to go back to being the same? Can I change it back?

Yeah, change sucks. Sometimes. Not always.

As it turns out, no matter how much Cap’n Crunch I eat, change comes whether I like it or not. Change often comes when we don’t want it to. When we aren’t expecting it. When we want nothing more than to continue with status quo, when “as is” seems good enough. It seems no matter how hard I try to hang on to “what used to be,” it quickly becomes “what was.” Especially when it comes to my kids. As I watch them growing up, moving forward and “changing,” I dig my heals in, tie a harness around the biggest tree I can find and hold on to “same” as long as I can. Guess what? The tree falls over, the harness snaps and I fall flat on my face, landing in a big pile of change. Yeah, I know, “it’s what’s supposed to happen,” but it doesn’t mean I have to like it.

Change sucks. Sometimes. Not always.

There was a time when I longed for change. A time I begged for change. A time I prayed for change. A time when I feared the status quo and “as is” had me freaked out. I desperately wanted things to change, things to become different, even though “different” was precisley the driving force causing me to wait for change to come. And I didn’t want to wait for a new year for change to arrive.

I wanted my son Ryan’s language to change from scripting to communicating. I wanted his overloaded sensory system to change so his day-to-day life was easier for him (and yes, selfishly, for the rest of our family). I wanted his lack of desire to connect and make friends to change. I wanted my son’s insistance on routine and his fear of change to change. I wanted his diagnosis of autism to change, for him to not have a diagnosis at all which would make all those other changes I wished for no longer necessary.

But with all this change I bartered and begged for, what really needed to become “different” or to “become something else” was me.

I needed to change… my understanding, my fear, my ignorance and my awareness. My son didn’t need to change, I did. When he was scripting, he was communicating — I just needed to change how I heard him. When his sensory system was overloaded and he was in the throws of a meltdown, I had to change how I viewed the world so I could see his view in order to help him. I had to change my thinking of what a friend was and what a friend needed to be. I had to change my fear of disrupting his routine and find ways to help him cope when the routine had to change. I had to take my worry, fear and lack of understanding of autism and change how I viewed this diagnosis and realize that autism did not make my son “become something else.” He was and has always been Ryan. I just needed to change how I saw him.

And I did. This time, change did not suck. This time, change was good. This time the status quo needed to be disrupted. “As is” was no longer cutting it, and it was hurting my son. This time, I had to “become different” and “become something else.” This time, change didn’t hurt me. This time, change saved me.

It was my insistence on things being the same — the same as they were for my oldest son, the same as they were for kids in my son’s daycare class, the same as they were for my friends’ children — that caused me to want change for him. And at the time, I believed this change was best… for him. Yes, in some ways those changes may have helped Ryan communicate better and get through the ins and outs of his day better, but he didn’t need to change — I did.

Change sucks. Sometimes. Not always. But when your heart is in it, really, really in it, you can change. You can “become different,” and that difference may change your world and the world of someone you so desperately love.

Wine and Cap’n Crunch will not change though. Guilt be damned.

mom and son at dinner table
Kathy and Ryan

Follow this journey on The AWEnesty of Autism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

I am (or was) terrified of people because of how easily a faux pas can diminish the chances of a good first impression or even one afterwards, and this is the result of my frustration, being on the autistic spectrum and susceptible to social maladaptation.

In the following poem, I am a force to be reckoned with, as my effervescing anxiety manifests in loud turns of phrase and swift dervishes of verse that recall back to the poem it was inspired by, “Alone” by Edgar Allan Poe, and in it I am larger than my own reserved self when I am off the stage. The message itself is more important than the construction of the piece as based on its reception, this poem strikes a chord in many people’s hearts. As an Asperger’s syndrome awareness advocate, bringing people together through mutually recognizing our own timidity in social situations is the most beautiful spoil of my work.

One of my closest friends once told me that he does not experience social anxiety because he has no recognition or fear of awkwardness that may result from a social blunder. While this is a way to easily dismiss this anxiety, sometimes it may magnify it because learning how to forget to recognize your own awkwardness increases your chances of committing it anyway. This is why I continue, even to a minuscule extent, to fear the judgments of others, even when they do not matter in the grand scheme of things. Of course, I was feeling the pressure to be more conforming to what is socially acceptable when this was written (which I instead invalidate in the poem by mentioning the transience of acting cool), so this makes this piece I believe one of the better ones in my repertoire.

I hope you enjoy it just as much as I did writing it.

“Terrified of People,” by Iain Kohn

And yet, in spite of all my differences from the common person,

there is no more significant affliction to me than how I like to isolate myself

from common people too.

Loneliness is my specialty like trembling is that

of an earthquake, or how a closet is designed

to hide all the right parts of me, or waves wash away the completed work.

The few friends I have I never get to see as often

as my peers at, say, school, who constantly talk

with gaggles of teens stampeding aimlessly. But

as they sound their staccato foot stomps and

strange shouts of shameless incantations, my right to enter

a conversation with other friends shatters with the shyness of Asperger’s syndrome.

I am terrified of people.

Now, a common person would say that my disorder is mere shyness and implore

me to get back on my feet, saying, “Hey, maybe there’s someone who shares

your common interests.” And I respond:

Surely, you know someone with as much of a passion for language as I do?

How about people who would rather do nothing than

watch a football game? Someone who would rather choke on Legos than take a selfie?

And then you think, “Well, he’s not trying.”

But you must understand that I am terrified of people.

There is a treasure chest of good qualities I can display to the world,

but day by day I choose laptop screen,

video game by video game letting social awkwardness infiltrate enemy territory.

I have no escape. When you look at me, already I am thinking of what you are thinking of me,

and my awkwardness will diminish my chances of making a friend

as quickly as dust settles on long-forgotten opportunities,

I am terrified of people.

I am terrified of people.

And yet, I secretly enjoy having a swing set all to myself,

a conversation just to me, the air blowing into my face from a mile away. I have resigned to how I will never be normal and started searching for an identity.

After, not many people have the willingness to stand up

for their weaknesses, but me, I make them willpower.

Happiness is obliged to trample over insecurity.


a loud cry for help:


becomes a soft, proud declaration:

“I am terrified of you.”

New Jersey Governor Chris Christie signed a bill into law on Monday that has prison terms up to 10 years for people who endanger the welfare of those with developmental disabilities, reports Asbury Park Press (APP).

Senators Steve Sweeney and Robert Singer proposed the law after they heard the story of Parker Drake, who was allegedly bullied by two acquaintances last year. Drake, who has autism, jumped off a jetty into the Atlantic Ocean on Feb. 26, 2015, and Nicholas Formica and Christopher Tilton, who reportedly bribed and encouraged him, took videos of the incident and allegedly posted them on social media, reported.

In an interview with APP prior to the passing of the legislation, Drake stated, “I didn’t really think I was going to make it,” adding that he had no idea he was going to be jumping into the cold water — or filmed. “I would like for them to be prosecuted, and I would like for there to be better laws to protect disabled people,” he said.

Per the new law, it’s now a second-degree crime to “create a substantial risk of death for someone with a developmental disability.” The crime is punishable by five to 10 years in prison or a fine up to $150,000, or both. Legislation for lesser offenses is also now in place.

“These added protections should send a clear message that this type of bullying and dangerous acts against those with developmental disabilities won’t be tolerated in New Jersey and that those who do so will be held accountable,” Senator Singer told APP.

In 2014 the Centers for Disease Control (CDC) released a report showing 1 in 68 children nationally has an autism spectrum disorder, but in New Jersey that rate was 1 in 45 children, and 1 in 28 boys. Autism New Jersey cited that number as the highest in the nation.

Dr. Suzanne Buchanan, Executive Director of Autism New Jersey, expressed her gratitude towards the lawmakers and explained to The Mighty what we can do to continue making the community a safer place.

“While the law will hopefully offer greater protection for our most vulnerable citizens, we must continue our proactive efforts of raising awareness to help build communities that embrace and accept individuals with autism,” Buchanan said. “Whether it be via character building, awareness campaigns or disability support programs, children and adults alike will have a greater understanding and sensitivity for the disability community. These qualities will hopefully reduce episodes of harm and increase meaningful inclusion for individuals with autism.”

h/t 94.3 The Point

The town of Surfside Beach, South Carolina, has declared itself an autism-friendly travel destination.

On Tuesday, January 12, the town council released a proclamation saying it would cater to families who had special needs children to make vacationing in Surfside easier and more enjoyable, WBTW News reported.

Becky Large, a local woman whose son has autism, has lead the charge in getting her town to declare itself autism-friendly. Surfside plans to offer accommodating restaurants to families with special needs and fun sensory-friendly events at the local aquarium and movie theater. 

Welcome center sign

“[We’re] creating opportunities for people to be able to leave their homes and feel comfortable and if their child has a meltdown, everyone around them gets it and it’s OK,” Large told the outlet.

Large says that as far as she knows, no other town or city has made a declaration like Surfside’s, making it the first autism-friendly vacation destination, WYFF 4 News Reported.

The mayor of Surfside Beach, Doug Samples, says his town is a great fit for catering to special needs because its relatively low density of people and its family atmosphere.

“We’re trying to create a judgment-free zone, and not just for a few hours but for a couple of days,” Large told WYFF 4 News.

Get more on Surfside, South Carolina, in the video below:


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