I Don't Have a Child on the Autism Spectrum, But You Don't Struggle Alone

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At first, you appeared to be just another mother letting her child release energy on a hot, humid morning. We engaged in brief conversation while sipping coffee as the children climbed through tunnels and giggled down the slides. When another child informed you that your daughter had removed her pants in the tunnels above, you hid your face and apologized to me. As you explained that she was on the autism spectrum, you asked for forgiveness for something that was out of your control. It seemed to me that you had met unaccepting minds during your journey thus far; but I was not going to be one those people. There was no need to apologize.

Our paths crossed at a difficult time in my life. You wouldn’t know by my appearance, but I’ve been dealing with a debilitating condition for 12 years that has recently become much worse. My body has been plagued with an illness that has had no name, despite over a decade of extensive medical testing. You may think this has nothing to do with your daughter, but let me explain why it does.

 

We all deal with something in this life. Some of us struggle more than others, making life seem unfair and daunting. I saw you there, patiently providing the support your daughter needed in a moment of unpredictability. I wanted to give you a hug. I wanted to tell you that it was alright; no one was judging you or your family. In that moment, I felt I could relate to you; not because I had been in your shoes, but because I had struggled in my life to depths that can feel isolating. My life struggles allowed me to empathize with yours; an ability unique to human beings.

You reminded me that I don’t struggle alone. You reminded me that our world is a place of heterogeneity, and while we may feel we stand out from our surroundings, there’s always someone who can see past the facade to empathize with our individual situations. I know my letter won’t make your parenting, or your daughter’s journey any easier, but I hope you remember me the next time you find yourself in an unpredictable situation. Your calm and loving parenting is admired, and does not go unnoticed. And, lastly, thank you for reminding me that in the middle of a world that demands perfection, we are all just perfectly imperfect human beings.

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Thinkstock image by freemixer

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People in Autism Community Review 'Atypical,' Netflix's Original Series About Autism

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This summer, Netflix is launching a new original series about a teenager on the autism spectrum. “Atypical” follows Sam Gardner (Keir Gilchrist), a high school senior on the autism spectrum, and his family as he navigates dating, school and being a teenager.

Ahead of the show’s launch, we asked three people from the autism community — Lamar Hardwick and Erin Clemens, who are on the autism spectrum, and Jodi Murphy, a mother of a child on the spectrum — to review the first episode of “Atypical.” Here are their thoughts.

The Mighty: What does ‘Atypical’ get right about autism?

Jodi Murphy: You can tell that the writer, Robia Rashid, did her research or has a close relationship with someone on the autism spectrum. She writes from a neurodiverse perspective even though most everyone is Sam’s world doesn’t seem to accept that neurodiversity is a good thing. For me, that’s what’s most interesting about the plot as opposed to Sam’s autistic characteristics. I think it realistically shows the tension that comes from living in a world that doesn’t understand or fully accept you.

Erin Clemens: In my opinion, what “Atypical” got right is the fact that, for many on the spectrum, there are sensory issues with touch and sounds, and change is difficult. It also got right the feelings of being at school and the issues I’ve had with the crowds, noises and smells. I think the stimming was right on point as well.

Lamar Hardwick: Overall, I think “Atypical” did a fairly decent job. Of course, my assessment is based on the first episode, but the concept of the show being driven by a first-person account pushes the show in the direction of being more authentic.

Let’s talk a bit about Sam. What did you think of Sam as an autistic character? 

Hardwick: I like that the show gave Sam space to self-reflect and demonstrate his self-awareness. He gets to work through his understanding of self, and the audience has the opportunity to understand how an autistic person views themselves and the world around them.

So often the stories told about autistic people are focused on the world’s view of them. It was nice to see the show focused on how Sam interprets the world around him.

Clemens: I liked how, even though Sam is on the autism spectrum, “Atypical’ shows him as a person with thoughts and feelings like everyone else. He still goes through things that typical teens go through, just in a different way. This is so important for people to remember!

However, I didn’t like how completely blunt Sam tends to be. While I know some people on the autism spectrum can be blunt (I have been myself at times), I also feel that at Sam’s age I was learning to stay quiet. I did this because I knew I shouldn’t say certain things, I just didn’t know what those things were.

I also feel that his character was too openly factual — a major stereotype of autism. He knows facts about things and shares them with everyone he meets. At Sam’s age, I feel like he would have been more aware of this, too.

Murphy: I like Sam and his passion… I won’t give away what that is, but it’s endearing. He’s a really good guy trying to figure life out like the rest of us! He’s going to make mistakes, but I appreciate that he keeps moving forward.

What about the actor who plays Sam, Kier Gilchrist. Any thoughts there? 

Hardwick: There were parts of the episode where I felt some autistic traits Gilchrist displayed were a bit too overstated. While the actor did a pretty good job overall, issues such as lack of eye contact and taking things literally started to feel like a caricature of autism. I’m not sure that an autistic person would always see themselves in that light.

Clemens: I thought Gilchrist was great, but… some of the stereotypes portrayed were frustrating. He got the stimming part down well, though. I loved how he fit that in, and it seemed to be at the correct times. I would be very interested to see how the actor would portray a meltdown or a more overwhelming situation that is too difficult to handle.

Murphy: Gilchrist does a great job at portraying Sam, one person with autism. But we need audiences to know that everyone with autism isn’t a carbon copy of Sam.

I am a bit disappointed that Sam isn’t played by an actor on the autism spectrum. There are many autistic individuals who are great actors and should be given the opportunity to audition and play such a role.

What about Sam’s family? What did you think of the Gardner family dynamic?

Clemens: The family dynamic was very interesting! I thought Sam’s sister was very nice and protective. The mom’s concern for Sam was completely accurate in my eyes, and I appreciate that the dad is like the rock in the family. I really liked the scene where Sam and his father were together. I think this [was one of] my favorite parts. The only aspect that might be missing is that some families tend to be in denial that there are any issues at all.

Murphy: I wasn’t fond of the family dynamic. I thought it was a bit cliché and it could have been so much more interesting if they were quirkier and happier. 

I had major issues with the mother, perhaps because she’s so different from me. I think she comes from a place of fear and I don’t think she fully accepts her son. She seems sad, somber and tired. Rather than worry he’s going to fail or not fit in, I’d be busy finding activities and groups where he feels comfortable and included. I really hope my first impression of her is wrong and I grow to like her after watching more episodes.

Hardwick: My one major concern about the episode and the series, in general, is that Sam and his family fit a stereotypical understanding that autism only impacts young white males and their families. With diagnostic disparities between white children and minority children still being a significant issue, this may unintentional reinforce an image of autism that is inaccurate.

Based on what you’ve seen so far, would you watch the rest of the series? 

Hardwick: Despite a few concerns, I did like the episode and would want to watch the entire series to see how, and if, the show works through some of those issues.

Murphy: I’m not emotionally hooked to these characters yet, and I can’t quite figure out why. I’m not drawn into their lives and don’t feel compelled to binge watch all the episodes. That said, I am excited that Netflix and the writer cared enough to look at life from Sam, the autistic protagonist’s point of view. That alone makes me want to continue to watch and see what happens.

Clemens: I would want to watch more episodes to see what else they might touch on that relates to the autism spectrum. While I don’t quite agree with every aspect of the autism spectrum that they portrayed, I really appreciate Netflix for trying to create more autism awareness. Plus, I’m definitely interested in seeing if things change for Sam or his family, or maybe see how they portray a meltdown.

You can watch all eight episodes of “Atypical” starting August 11 on Netflix. 

Erin Clemens is a 28-year-old woman on the autism spectrum. She is also the author of the book “I Have Asperger’s.”

Lamar Hardwick is a husband, father of three boys and a pastor of a church located in Lagrange, Georgia. Hardwick was diagnosed with autism spectrum disorder in 2014 at the age of 36. 

Jodi Murphy is a mom to a son on the autism spectrum and the founder of Geek Club Books, 501c3 focused on innovative, entertaining autism education. 

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6 Tips for a Successful Trip to the Beach With a Child on the Autism Spectrum

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Planning a trip to the beach sounds like a lot of fun. But it can be a bit stressful when you’re planning for your little one with autism. I live close to the beach and frequently take my 3-year-old twins; one of them was recently diagnosed with autism. I figured I would share a little bit of wisdom (insert laugh here) to those of you planning your beach vacation. Here are a few things to keep in mind.

1. Safety First.

If your child is an explorer (other wise known as a wanderer), take steps to ensure his safety. Call the local police station to let them know you are coming. Send them a picture of your little one. You could also contact the local Autism Society of America (ASA) chapter ahead of time to get the skinny on local policies and phone numbers.

There are also stickers and bracelets you can purchase with your contact information. If your child lets you, you could simply write the info on their leg with a permanent marker.

2. Location. Location. Location.

Consider taking your family to a calm beach without the big waves. This way, your family can enjoy the water without worrying about the rough surf. We live a mile from the ocean front, but we never go there. We visit the bay.

You may be thinking, “What’s the beach without the waves?” or, “I don’t think it will be fun enough.” My older kids love the calm water. Instead of surfing, they paddle and skim board. They can also take floats in the water and relax. You can’t do that with big waves.

 

3. Timing is Everything.

Holiday weekends seem like the perfect time for a beach trip, unless your little one is on the spectrum. A crowded beach can be overwhelming and can present more of a danger for your explorer. Weekdays and “off weekends” tend to be less crowded.

My family loves to visit the beach in the late afternoon/early evening. Benefits include less heat, less packing and less people. Sunscreen is optional, and the beach is gorgeous around sunset. Consider going to the aquarium or doing some other indoor activity during the heat of the day.

4. Bring Reinforcements.

No, you don’t need to pay a nanny. Just bring anyone who has a helpful attitude and loves the beach. My best friend’s daughter is 10 and she’s been helping me for years now. Having an extra pair of eyes and hands will give you piece of mind and enable you to relax a bit.

5. Be Flexible.

I always (try to) say, “Mind over matter.” If you’re flexible and positive, you’ll enjoy yourself no matter what challenges may come your way. If your kiddo has a meltdown at the beach… just head over to the ice cream spot. For us, problem solved! It’s vacation. There are no rules.

6. Some Crucial Items for Your Packing List.

Make sure you pack enough shade. My little one doesn’t do well with the heat, so we always pack a few umbrellas. If you don’t feel like lugging them around, you can probably rent them right on the beach. There are also delivery services that bring them right to you.

Baby pools are awesome for water play in the shade. You can pick up a blow-up pool at any beach store.

I’m a huge fan of Puddle-Jumpers. They’re a cross between a life jacket and arm floaties. No matter how my kiddos wade (or fall) in the water, their head seems to stay on top! Of course, they’re not fool proof, but they give me peace of mind.

I would love to hear what tips or tricks you’ve learned while taking your child on the spectrum to the beach!

Follow this Journey at Not an Autism Mom

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My Daughter's Autism Diagnosis Didn't Break My Marriage, Ignoring It Did

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This is the story of a single mum raising her 3-year-old daughter who is on the autism spectrum.

At the age of 1.3 years, my daughter was diagnosed with autism spectrum disorder. My husband, at the time, did not believe it. He thought the diagnosis would wreck our daughter’s future and that if we “ignored the label” she would be better off.

I refused to give in to his plan and decided to take her to all the possible (limited) therapy programs provided in the country we live in. I took her to various occupational therapies, speech and even ABA sessions. The articles I read on The Mighty by parents who put the time and effort to share their stories for people like me, made me more hopeful and more accepting of everything related to my daughter’s condition. It taught me that it’s not something we should hide away as if it’s something to be ashamed of.

My husband refused to participate in anything related to her well-being or even daily routine. Which just prepped me and gave me more time to practice being the single mum I currently am. The autism diagnosis didn’t break my marriage, ignorance did.

All those nights of me listening to the negative comments of how my daughter can never be “normal” and “isn’t acting like children her age” made me stronger and more determined to focus on her, and only her. I devoted all my free time to being the only caregiver and to support her in every possible way.

My daughter is now 3 years old and her speech and social skills are improving dramatically through the continuous sessions she is taking.

 

As parents, having a child on the spectrum is challenging because of the stages we have to go through.

1. Acceptance.

Accept autism is not something to “swipe under the rug” or something to be ashamed of. You have to realize wishing it away won’t help, it’s there and it will not go anywhere. We gave birth to miracles and they stand out more than anyone else and that to me is something to be thankful for.

2. Acknowledging our work can be twice as hard as other parents handling toddlers who aren’t on the spectrum.

It’s never ending, the routine could break us down at times, but we manage to get back up again. We believe no one else can do the job better than us and this is what keeps us moving forward. Our kids can see those invisible capes behind each of us. Just know you are fit to do it.

3. Patience.

Our kids’ behaviors are not “on purpose,” our children are not spoiled as many people tend to think. And you know what? Who cares what anyone thinks! Jump in that bubble with your child and live there.

4. Our kids know.

No matter how young your child is, they can feel us, and they know how we are feeling even if they don’t show it. My daughter can be the most affectionate and the best at showing it through those random hugs and kisses that she tends to surprise me with.

For all those single parents of children on the autism spectrum: hang in there, it’s doable. Focus on all the good moments you share with your child. Those moments count. Take it one day at a time. It’s better to focus on your miracle than give in to the denial of a spouse who thinks ignoring something might make it go away. We are all our children need, and we are enough.

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To My Grandson on the Autism Spectrum on Your 3rd Birthday

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My dearest Noah,

You are 3 years old now and I can honestly say I’ve never met another little boy like you. Your striking blue eyes and beautiful blonde hair makes you look angelic. But looks can be deceiving.

You are fiercely independent. In a way I’ve never seen before. Your refusal to ask for help can sometimes get you into trouble, too. If you see a cookie on a counter that is out of reach, it becomes your mission to acquire that sweet treat. You become James Bond. I can hear the “Mission Impossible” theme song running in my head as I watch your little mind figure it out. Only no mission is impossible. I’ve never seen a child who can scale a cabinet wall like you. You will use the drawer handles like rungs on a ladder and be on the kitchen counter in a matter of seconds. I’ve even walked in several times to find you standing on the breakfast table, holding your hands up to literally hang from the chandelier. It’s very scary for us but you seem like you are not only fearless but completely at ease with heights. You seem to have no sense of danger. Even after you get hurt.

Your insatiable desire to go outside is another constant worry of mine because you will walk out the door and just run if you find the tiniest opportunity at any time of the day. You just run. Down the street. Laughing and giggling and going as fast as your little legs will allow. I know. It’s happened. Your mommy has turned around to see the front door open and ran out to find you two houses down like you had just escaped from an enclosure and were feeling freedom for the first time.

One of the many thing you’ve learned this year is to stroke a persons cheek as a sign that means, “I love you.” Just the other day while playing, you stopped in your tracks, looked me directly in the eye and stroked my cheek ever so gently, “I love you.” It makes my heart skip a beat every time you do it. Your eyes seem to see straight to my soul. It is truly incredible.

You are a light, my dear little wonder boy. A light that shines brightly. I am in awe of you. And it seems that, just like light, you are everywhere all at once. All the time. You are like a stealthy little cat that finds it’s way into situations that are unbelievably remarkable or dangerous or sometimes just plain gross. The problem is, you don’t have nine lives.

You are a conundrum of sorts. An enigma. You have a different way of communicating with us. Why do you run endless loops around our living room? Why do you giggle hysterically while you do it? Why do you speak gibberish to the fingers on your right hand, as if you were having a conversation with it? Why do you sometimes sink back into your world and seem not to notice us anymore? When will you talk?

My mind races when I think about your future and all the possibilities it holds. And the impossibilities. I think about all the doors that will have to open for you, and of course, all the doors that might remain shut. I think about the difficult road you have ahead and relish in the fact that right now, you are only 3 years old. You are happy. Centered. Whole. Healthy. And so full of joy. The world has not shown you it’s cruel hand yet. I hope we can protect you from it for as long as possible.

I think you have secrets. Secrets to happiness. And the rest of us want to know what they are.

I love you my little Noah.

Happy Birthday.

Follow this journey at gmawandnoah.com

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7 Tips to Help Your Son on the Autism Spectrum Cope With Haircuts

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In my experience, a common issue for boys with autism is having their hair cut. Often, a hair salon is a busy and noisy environment. People coming and going can be enough to make a person with autism feel over the edge. The environment alone is just one factor, you then have the quandary of how to get them to sit in the strange chair, still, I may add, for the 20 minutes it takes to cut their hair.

Then the anxiety of how they will look different once it’s cut and looking at yourself in a mirror, topped off by the noisy clippers that come out of the holder.

Imagine.

The water spray, the noise, the people, the chair, the mirror, the noise, the clippers, the comb in the hair, the people, the hair dryer, the water, the talking, the mirror.

You can imagine how this could be a nightmare for a child on the autism spectrum. It can also be the parents nightmare as you struggle to cope with staring eyes, apologizing to the hairdresser as your child freaks out, screams, cries and leaving with no hair cut.

I’m not saying this isn’t an issue for a parent with a female child with autism, but a girl with long hair is socially acceptable.

I’m here to tell you it is socially acceptable for your boy  to have long hair, too.

Please, don’t resort to extreme measures of cutting your son’s hair in his sleep. Can you imagine yourself going to bed one night and waking up to your hair missing? No? Me either. In fact if it did happen to me I’d be in a police station reporting a crime. Just because you are a parent doesn’t make this OK. Your child is a person, too.

So how can you deal with your son’s hair?

 

Here are a few solutions:

1. Have a mobile hairdresser come to the house where you child can be groomed in a familiar environment with an iPad, computer game or favorite toy nearby — and less noise.

2. Rock the long hair look. Boys can have long hair. It’s OK.

3. Contact your local college and see if they have any adult education classes in cutting men’s hair. Then do it yourself, in your child’s own time.

4. Write a social story for your child, take pictures of the salon, the hairdresser, and prepare your child as much as possible.

5. Talk to the hairdresser, explain ahead of time the difficulties your child may have and see if you can come up with solutions together. Counting the cuts of the hair might help, or allowing the child to move freely around as they need to.

6. Investigate quiet clippers. If your salon doesn’t carry them, buy a pair of your own and take them with you.

7. Check out “autism barbers assemble” on Facebook.

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