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Why We Need to Talk About Autism and Self-Harm

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I can remember like it was yesterday — the day we were told my son is autistic. I have to say, I was overwhelmed by my conflicting emotions.

I didn’t know how to feel, what to do or how to react. I was numb.

In the days that followed, it began to slowly sink in, and really, to be honest, nothing had changed. Except deep down I felt a sense of relief that I had been right all along. And at the end of the day it was just a label. My son was no different; he was still him.

Life ticked on as usual.

What I did next I presume all parents do at one time or another — I found myself with the laptop on my knee Googling “autism.” I just couldn’t help myself.

And oh my goodness what a load of rubbish there is out there on the Internet. It’s enough to scare parents half to death. So much misinformation and ignorance to be found with every click of the mouse. It made me want to wrap him head to toe in cotton wool to protect him from the world.

I also vividly recall sort of mentally ticking so called “symptoms” off like a list.

Well yeah, he does this.

And I suppose sometimes he does that too.

Oh, but no not that… He never does that.

I comforted myself when I stumbled across the links between autism and self-injury. Children who do that must be really “severe,” I thought to myself.

I was wrong.

The anxiety that lives inside my son kind of moves and shifts; it confuses and lulls you into a false sense of security. Its symptoms can increase and decrease according to its environment. And “high-functioning” label didn’t mean my son got a free ticket to bypass the more worrying and far less talked about sides to autism – like self-injury and anxiety.

I soon realized his anxiety could consume him. I love my little man more than life itself, but if you told me if I could lessen his anxiety somehow, my reply would have to be, “Where do I sign up?”

If the doctor had told me that one day in the not-so-distant future my son would have self-injurious behaviors (SIBs), I would have cried there and then. No one wants that for their child, autism or no autism.

But this is exactly where we found ourselves last year, drowning in an ever-spiraling
whirlpool of anxiety. This vicious cycle engulfed him, and I just couldn’t drag him from the darkness. It broke my heart. If I could, I would have swapped places with him in a heartbeat; I just wanted to take his pain away.

He became so consumed by his anxiety that it became extremely challenging for him to learn at school. Just the process of getting there was draining him.

So we put his world on pause and reduced his school attendance to two hours a day. We had to reassess everything and modify his environment drastically for the sake of his mental health.

It was a long and slow journey to recovery — I mean months, not weeks. But we had fun. We went swimming and dive-bombed in the deep end of the pool, savoring each experience and taking our time. We walked the dogs and got wet and muddy; we baked cakes, making a right old mess of the kitchen. And yes we learned math and English, but in his own way, not mine. Until slowly day by day he began to laugh and smile a little more.

He has started at a new school full-time and is genuinely happy there. So his anxiety has shifted again; it no longer consumes his every waking thought.

I knew what my son needed to get better; the world needed to mould around him. And the people around him needed to be flexible, following his lead, truly accepting him for who he was, and then and only then he would trust them to keep him safe and let go of his worries.

I fear that too often our kids are bent so much to fit into our world that they simply snap under the pressure, and this is where they encounter so many problems. Too often, the education systems are just so inflexible.

So you see, now I will never take anything for granted or make assumptions about autism ever again. I will never again think my son cannot possibly be affected in certain ways, and I will always look beyond the label.

Self-harm/self-injury affects approximately 50 percent of people with autism at one point in their lifetime, and I strongly believe we should be talking about this more than we do. It shouldn’t be something only discussed in the doctor’s office or behind closed doors.

As hard as this has been to share, I hope by reading it you can be stronger than I was, and act sooner. Don’t let your child be bent to snapping point. It’s truly my biggest regret.

My son is proof that there is always a light at the end of the tunnel, our kids have so
much to teach us about living in the moment; the dark days can become distant memories. And I am learning that my son has far more to teach me than sitting down and Googling “autism” on my laptop can any day of the week. All I have to do is learn from him, follow his lead and be strong.

Follow this journey on A Slice of Autism.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Mighty is asking its readers the following: What’s one part about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. 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.

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Mom Fires Back After Gymnastics Studio Denies Daughter With Autism

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Tia Crowe’s 3-year-old daughter Bella was recently denied admission to a gymnastics class at Creative Arts Academy in Gladstone, Missouri, due to her autism, and Crowe took to Facebook to express her outrage over the situation.

Crowe told local news station KCTV she chatted with an employee about enrolling, but when she revealed Bella has autism, she was told another staffer would give her a call back.

Crowe received the following voice message:

Tia, this is Diane at Creative Arts Academy, and Megan told me that you had called on Friday and were interested in a Tumble Jungle class for your 3-year-old daughter with autism, and we are sorry, our instructors are not trained for special needs classes, and I don`t think it would be fair to your little girl, or to bring her in to one that we don`t have some training in that. So I’m sorry and hopefully you can find some program for her. Thank you.

It was hurtful,” Crowe told Gladstone’s Fox 4 News. “I feel like she was just being judged.” Crowe added, “It is discrimination. I feel like they saw her for a disability right away, right when they heard the word ‘autism,’ and it’s just not fair. I don’t want her to grow up like that and I don’t think it’s right for people to think that.”

Crowe added on her Facebook page:

I have never been in this facility but i called to try to enroll my daughter in a class but was denied because she has autism! It’s very sad to me because my daughter is so smart and amazing! I don’t want anyone to see her as a disability and that is the first thing the owner did! It’s very rude and hurtful.

 

I have never been in this facility but i called to try to enrol my daughter in a class but was denied because she has…

Posted by Tia Harletta Crowe on Monday, March 21, 2016

 

Owner Pamela Raisher told Fox 4 News that after the message was posted on Facebook, Creative Arts Academy has received all kinds of negative feedback. She explained that the safety of the kids is her number one priority, and that her team is not currently trained to handle children with special needs.

“I would love to have an instructor that is as talented in dance, or gymnastics and special needs,” Raisher told Fox 4 News. “If there’s someone out there, please I would hire you in a heartbeat. We would love to have more programs, but we have to work within what our reality is.”

Bella’s therapist spoke with an employee at the studio and asked to attend a class, but during that conversation, the therapist was told it would not allowed, reported Fox 4 News. After Crowe’s social media post sparked outrage, Raisher told the Crowe family they could attend a trial class, but Crowe declined the offer and told KCTV that she found another local studio instead.

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To the Overwhelmed Parent Whose Child Was Just Diagnosed With Autism

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Today is the day that everything changes, and yet everything remains the same. You have a diagnosis. You have an answer. You have a label. Yet you have the same child in front of you. You have the same challenges. However, you’re venturing into new territory. It can be exciting and overwhelming at the same time. Take a deep breath. I’ve been there. Here’s my advice.

Today you will start a journey. Embrace the journey. Your path is your own to create. There is no roadmap to follow. Your journey will fit the needs of your child and your family. There isn’t a right or a wrong way. Some days you may choose the shortcut because you are simply too exhausted to do anything else. Another day you may take the scenic route and find yourself overwhelmed by the beauty. You may stop and rest along the way. You may get lost and you may have to backtrack. At times it may feel like a long and lonely road, and other times you may find yourself pleasantly surprised by the people who you meet along the way.

There will be times when you will be overwhelmed by emotions. It’s OK to cry. It’s not a sign of weakness. Bringing a child into this world is an enormous undertaking. They carry around a piece of your heart with them. When they struggle, you struggle right along with them, and it breaks your heart. You will feel sad for them as they encounter people in this world who don’t understand them. There will be people who aren’t kind and empathetic. Let the tears flow when they need to.

You can love your child unconditionally, but their behaviors can be extreme and you may be exhausted and frustrated. There may be moments when you will lock yourself in the bathroom because it’s the only quiet place in the house and you just need a moment to compose yourself.

It doesn’t make you a bad parent. It makes you human.

You can’t make it through life alone. You will need a support group. Find friends and lean on family. These people will be like gold. They’ll be there for you on days when you feel like the world in caving in. They’ll listen to you even when they don’t understand. They’ll laugh with you and they’ll cry with you.

There will be moments when you question yourself as a parent. There will be moments when you look back in hindsight and can think of a hundred better ways to handle the situation. You’ll look at other parents and compare yourself to them. They seem to have things under control. They seem to be doing a better job than you are. We strive for perfection, but we are never perfect. It’s OK to mess up and be an imperfect parent. It’s OK to react to a situation. It’s OK to feel like sometimes life isn’t fair. Sometimes it isn’t.

Raising a child with autism will change you. As the years pass, you’ll look back on this day and be astonished by how far you have come. We mold to the life we are given. You’ll have days when you pull strength from places you didn’t even know existed and days when you feel like you are burdened with the weight of the world and can barely go on. Today is only one day. Tomorrow is the future. One day at a time.

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 community@themighty.com. 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.

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To the People Who Call My Child's Autism a 'Tragedy'

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Well, I’ve got my gander all up again. Thanks a lot, Facebook.

Apparently, there’s more and more misinformation floating around “the Internets” about a supposed link between childhood vaccines and autism, even though the medical and scientific communities have disproved such theories time and again.

Somebody posted something about it on — where else? — Facebook, and normally I would scroll past and ignore. Except I didn’t, given who posted it. And then at least two people commented on the original post, referring to autism as “tragic” in their comments.

Immediately I wished I had just avoided Facebook.

boy sitting in swing
Sheri’s son, Travis.

How can I stay quiet over that? When my son’s diagnosis becomes a reason for others to deem his life a tragedy? I write a lot about disability, autism, inclusion, and about how all people — despite our differences — deserve to be treated with respect and dignity.

I’ve written recently about my friend who has been told that autism is a “made-up disease” and a cop-out for parents who don’t want to discipline their kids. Dealing with people’s ignorance is difficult, especially when you’re seeking to educate the uninformed about invisible disabilities. But there are just as many assumptions out there about disabilities (both invisible and visible) on the other end of the spectrum.

And calling autism a “tragedy” is one of them.

Parents of kids with disabilities can be caught between a rock and a hard place where we’re damned if you do, damned if you don’t. Ignorant people may think it’s all made up. That our kids (or possibly we, in an attempt to get out of responsible parenting) are faking it. They may view our children as selfish, entitled and defiant “brats” who just need some firm, heavy-handed discipline.

Other people — perhaps thinking they are being compassionate — would turn around and refer to my child as a tragedy. So I feel it’s imperative that I set the record straight. My child is not a tragedy. Neither is his diagnosis.

Autism Is Not a Tragedy

humorous t-shirt

My child has autism. Autism is neurological. As a result, he has difficulty learning basic social skills and in social settings. He has pronounced sensory issues. He deals with anxiety, inflexibility and irrational fears.

He is also highly intelligent. He is tender-hearted. He is funny and lovable and possibly the most creative person I’ve ever known. He is alert. He notices and remembers everything. He sees the world in a completely different light than anyone else I know.

He is not a tragedy.

Theories abound, and there are many vocal proponents of both sides on the autism/vaccine debate. I don’t get into the arguments too often. But I feel confident saying, looking back to my son’s earliest days and knowing now what I didn’t understand then: My son was born with autism.

When he was mere hours old, he opened his eyes wide and soaked up the world around him like I’ve never seen an infant do. His sensory differences were already apparent, the way he curled in on himself, the way he was instantly soothed when tightly swaddled, the way he had to be tightly held.

So, no, I don’t believe vaccines caused his disability. And I’m opposed to the anti-vaccine movement. That’s the side of the fence where I come down.

But despite whichever side of the controversy you land on, please don’t make the mistaken assumption that autism is a tragedy. That’s not to say it’s a bed of roses. Life with autism can come with challenges. It can be stressful, and hard to manage and can bring its own form of grief.

But autism is not a tragedy. 

The Other Side of Ignorance

When Travis was a first-grader, I took him to try out for the music magnet program in our school district. Being a musician, I already knew he was gifted musically, but he needed to pass the official test in order to be accepted to the program. He didn’t do well. He was distracted. He acted silly and refused to cooperate with the teachers in charge. I wanted to escape as quickly as possible.

I still remember how one of the teachers looked at me. She knew autism was real, and she didn’t judge Travis for his poor behavioral choices that day. She understood, or so she thought. But then she gazed at me, shaking her head, and I recognized the look in her eyes. It was pity. Complete, unadulterated pity. The kind of look that says, “Poor you.”

It infuriated me.

Sure, it was a difficult time for us. I was embarrassed and stressed out. I was fighting an uphill battle every day as I tried to learn more about autism and to parent accordingly. But I wanted compassion and understanding, sympathy and a helping hand. Not pity.

What’s the difference you might ask?

Compassion and kindness show respect for another person. Being willing to put yourself in another’s shoes, to lend a hand or an ear, to offer assistance and to stand up for the marginalized — these behaviors all are evidence of the belief in basic human dignity.

By contrast, pity can reduce a real live human being to nothing but a tragedy. With an attitude of “too bad, so sad.” I feel people who pity see only the disability, not the person.

Those who would call my son’s autism a tragedy see only see the diagnosis and its challenges. They completely ignore and dismiss the real boy living inside. Once out of curiosity, I asked Travis, “If you could take away your autism, would you?” He thought about if for a while and then answered honestly, “No. Because then I wouldn’t be me.” It’s a pretty healthy perspective if you ask me. Not a tragedy at all.

So please quit calling my son’s autism a tragedy.

It can be a challenge.

But my son is not a tragedy because he was diagnosed with autism.

Not at all.

He is a human being, who I believe was created in God’s image. He is fearfully and wonderfully made. He is the sunlight on a cloudy day.

He is a wonder.

And I for one, am thrilled he’s in the world.

boy holding trophy and toy car
Travis.

Follow this journey on Sheri Dacon – Lyrics for Life.

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 community@themighty.com. 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.

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My Plea to Parents Worried About the Autism 'Label'

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My daughter

I’m directing this post to the parents of children who are concerned by some of their children’s “quirks,” and after research are thinking they may be autistic… but are hesitant to get them assessed and diagnosed for fear of what possible effect a label on their children’s behavior may have on their lives. To the parents who love their children and are concerned and worried and feeling overwhelmed and a little lost.

Let’s break it down.

1. It’s totally normal to feel grief over your child not being “normal.”

Every parent wants their children to develop alongside their peers and achieve the same milestones at the developmentally “appropriate” time. No parent likes to watch their child struggle each day with daily tasks. It’s OK to feel sad. Going through the stages of the grief cycle is normal when it comes to having your perception of reality changed. But please don’t let this be the reason you don’t seek further support for your child.

2. Your child probably already knows they’re different to their peers.

Even from a young age, children are perceptive and incredibly bright little creatures and pick up differences in how they may operate in comparison to their peers. They may note that they get affected by certain things but their friends don’t. Having a diagnosis gives a child a sense of identity and awareness of self. It gives them tangible reasons to understand their behavior and preferences. It removes blame – they’re not acting this way by choice or for attention; it’s simply because their brains work a little differently.

3. Don’t keep waiting or hoping they’ll “grow out of it” – act now.

If you are noticing your child has behavior challenges or you’re able to identify several little “quirks” they have, but you’re hoping they’ll just magically grow out of it, please just be brave and seek support. The sooner a diagnosis can be made, the sooner support can be given.

4. Labels are life.

So you’re scared of your child being pigeon-holed into a box, yeah? You don’t want them to be limited on their chances in life? I hear you. Except labels are everywhere in life: noisy, loud, slow, small, big, annoying, quiet, shy, aggressive, anxious, extrovert, introvert. Labels describe a behavior, not a whole person. They can also be incredibly freeing and liberating to a child because they may be the pathway to support and understanding from their community. Sure – there may be judgment. But ignorance is everywhere, and it’s unavoidable. Don’t let it be the reason you don’t seek further assistance for your child at the most crucial and beneficial time.

5. What does it change?

It’s likely your child has been the way they are since birth, and you’ve loved them this way and you will continue to. Having a diagnosis label attached to them isn’t going to magically alter their personality or change who they are. Personalities don’t suddenly change when you get a diagnosis. The contrary often happens: their understanding of self and others’ understanding of them broadens and stretches. Your child is always going to be your child. The things you love about them won’t go away when they’re diagnosed. But the things they struggle with; well, you may find a light suddenly goes on in an otherwise darkened room, or a sense of direction is given when you’re feeling directionless.

6. Look at the big picture.

If you don’t think seeking a diagnosis is going to benefit your child now, can you take a look into the future? It’s really hard to tell what may present as possible hurdles to your child in as little as weeks, months or even years. Accessing support as soon as possible means your child benefits from learning coping strategies, techniques, skills and tools they can then put into place for years to come. What might look like some few minor issues now can quickly develop into more complex issues down the track; and it’s not something you can really predict. It’s better to be on board and informed as soon as you can, to support your child and their future development.

It’s totally understandable to be confused and a little fearful of an uncertain road. But you’re not walking it alone – many parents have done so before, and there is a great amount of support out there available to you. So coming from one parent who wishes with all her might she had deliberated less and acted sooner, I ask you: be brave for your child. It’s OK. It will get easier, I promise. Just take the first step.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. 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.

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How Communities Can Shift From Awareness to Acceptance of Autism

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April is quickly approaching and in addition to being known for its “showers that bring May flowers,” it’s also when there’s a national spotlight on autism. Autism Awareness Month in April is not without its controversies as many in the autism community feel it’s time to shift beyond the public’s awareness and emphasize acceptance. I mean, after decades of a nationwide effort in April, isn’t everyone “aware” of autism by now?

Contributor Jodi Murphy for Autism Awareness Month

What I like about a special month devoted to autism awareness is that the media will more likely cover topics related to autism, so we’ll have more of the mainstream’s attention. We have a window of opportunity to move the public past awareness into a greater understanding of autism. As a community, we can cause the shift and create the momentum that will bring about more compassionate, accepting communities in which we live.

When I saw a presentation by Holly Robinson Peete, Hollywood’s most notable autism advocate, she said something that continues to resonate with me:

“I urge any of you who have any kind of platform of any size to spread awareness about autism or special needs and how valuable our children are — it could be at a school function, a church meeting, a community event — do it so there’s always hope for them.”

I really wanted to do something actionable this coming month to make it easier for myself, other parents and educators to have conversations or lessons around autism. And then I had an idea. For the last couple of years, I’ve been collaborating with some amazing autistic adults who have expertise in filmmaking, writing and voice over. I’ve worked in partnership with clinical advisors and educational specialists — even a former Disney feature film’s illustrator.

Together we’ve created children’s stories and pop culture webisodes focused on the topics of autism. I pulled everything together — children’s comic e-books and apps, Bluebee TeeVee Autism Information Station webisodes and the curriculum, activity and episode guides — and added PowerPoint presentations, videos and student handouts into “Autism EDU,” a collection of educational tools for everyone who wants to spread autism awareness/acceptance in their own communities.

So share one of our Mighty League stories as an opener that leads into sharing your child’s story:

Or teachers, what about reading a story for language arts and include social and emotional learning, too?

Why not use one of the webisodes to help educate a family member so you can have a deeper discussion?

My hope is that this sparks some ideas for you. We don’t need to wait for big organizations to speak for us. We can cause the shift to happen. No action is too small or insignificant because together we can create a tidal wave of change.

My son and I will use these tools when we’re talking to students in a few classrooms and participating in Fullerton’s Mardi Gras for Autism on April 16. We’ll let you know how it goes! Likewise, we’d love to know about what you do this April to move your community from “awareness” to acceptance.

Find all the Autism EDU awareness/acceptance tools here.

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 community@themighty.com. 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.

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