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Why I ‘Lashed Out’ as a Child on the Autism Spectrum

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When I was growing up, and still emotionally immature, I lashed out a lot. I knew it was wrong, and that only made me feel worse. It wasn’t something I could control on my own. Or at least, I hadn’t learned how to yet. For me, personally, it was an impulse and self-regulation issue.

There were so many times I would get frustrated or upset over something and would need to do something to release that energy. So I would break something (not because I wanted to, but because I’d underestimate my own strength and release the frustration that way). Or I’d rip up my homework. Sometimes, in a last-ditch effort, I’d hurt myself in hopes that it would prevent me from hurting others.

It’s not as though I wanted to make people upset. I just didn’t know how to control myself so I wouldn’t upset others. I needed help with learning and applying self-regulation strategies. Punishment rarely helped me in these situations because I already knew what I was doing was wrong. It frustrated me and even scared me because I could see it happening and I couldn’t prevent it. I would start to get even more upset, and possibly have a full-blown meltdown.

To try and stop it, I had to learn other ways to release my feelings. Maybe I would use a weighted blanket to calm myself. Or I would squeeze some putty really tightly. Or I’d go for a fast walk or swing on a swing. Even listening to some music with lyrics that I could relate to would help me.

As an adult, I still have moments like this. I may still crumple up my homework, but I know to stop and try to focus on my breathing while lying under my weighted blanket. I can see it coming, and while I can’t always prevent it, I now know how to handle it better.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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A Mother's Day Shout-Out to Moms Loving a Child on the Autism Spectrum

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Ahhh…it’s almost Mother’s Day. That magical day when the Fairy Godmother shows up and grants mothers their three favorite wishes:

1. Sleeping in
2. A washing machine that cleans, folds and puts the laundry away
3. Wine that comes out of the kitchen sink

Oh, if that Fairy Godmother would just show her a** up! Despite her lack of attendance, many of us moms will still have a special day. Twenty-four hours dedicated just to us! A day filled with extra hugs, homemade gifts and reminders from kids, young and old, why we are fortunate enough to celebrate this day, even without our Fairy Godmother and her magical wand.

All moms deserve to be celebrated today and every day. We love without condition, we give without exception and we educate without a lesson plan. Yeah, we totally deserve this day!

Although, I want to wish all moms a Happy Mother’s Day, this is a special Mother’s Day shout-out to all my mom club members loving a child with autism. Our love is as exceptional as our kids.

So, Happy Mother’s Day to the moms who have walked in our shoes, shared our fears and celebrated our kids’ accomplishments! These are just a few reasons why I think even without that overrated Fairy Godmother, you are AWEsome and so deserving of a day to celebrate you:

For making the same breakfast, lunch and dinner every single day and stockpiling all the ingredients it takes to make that same breakfast, lunch and dinner every single day.

For writing letters, sending emails and calling the CEO of Nabisco, Keebler or whomever, begging them to bring back your kid’s favorite snack that they stopped making because clearly these CEOs have no idea the peril and disruption this decision has had on your kid (and on you).

For the endless hours spent finding just the right _______ (insert almost anything here such as socks, shoes, coats, pants) that your child will tolerate and your dogged determination to know that eventually a certain brand or style will work and praying they never, ever change that brand or style once you find it and your kid wears it. (See number 2 if this unfortunate event occurs. It will.)

For the ability to foresee a change in routine or schedule as often as you can, so you are able to do whatever it takes to make sure that change does not disrupt your child’s routine and ruin his or her day.

For doing what you can to make sure your other children know that their struggles, heartaches and triumphs are no less important than their autistic sibling’s.

For putting on your armor and taking on ignorance regardless of what form ignorance may come in…family members, bullies, teachers, or the person in the checkout line at the grocery store.

For taking on the job of advocate and educator so ignorance has as little of an impact on your child as possible.

For your ability to see the world through a different perspective and appreciate the view even on the cloudy days when visibility is low.

For getting there, no matter how long it took, to understand and believe “different, not less” because now, thanks to you, your child does too.

For being there. Always. Without question.

For being here. For getting it. For your child and the next.

Thank you, AWEsome moms.

We are a pack of lionesses, a den of mama bears, a club of moms who will stop at nothing, not even on Mother’s Day, to advocate, fight and show the world the AWEsome contributions our children can make if given the opportunity, if given a voice, if given acceptance.

Happy Mother’s Day. Even without that Fairy Godmother and her magic wand, you can, and you are, making wishes come true.

Follow this journey on The AWEnesty of Autism.

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To the Single Parent With a Child on the Autism Spectrum

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I am one of you. I see you at the autism support events, alone with your child trying your best to keep them calm and engaged in our group activities. I talk with you all the time online, giving each other encouragement and support, knowing this world can be a tough one, especially if you don’t have support. I see you in my daughter’s classroom. I am one of you, and I want to say these things to you…

You are amazing. You have courage and strength within your heart, and you make sure your child is taken care of. You do it alone, and that takes a lot. Your little one may not be able to tell you with their own words how much they appreciate all your patience and love but I believe they feel it. You advocate for your child, and you make sure people listen and learn about autism. You are a hero to me, and you should carry your head up high because you are doing this all on your own.

It’s OK to feel lonely and be scared. I can’t even begin to say how many sobbing sessions I have had in the shower where no one can hear me. How many sleepless nights I have spent worrying about her future, wondering if I am doing enough. Am I doing enough? Did I harm her by not being able to provide for her a traditional family unit? It’s in these moments of weakness that I remember the greatest power we carry as human beings is love. That’s all she asks me for, and that’s what I have a surplus of within my heart. I may not have a partner to hold me at night and tell me it’s OK, but I have my beautiful children who give me unconditional love, and they carry me through any hardship I may encounter. I give them my best, and I know they are the fuel I have every morning to continue to work hard to give them a better life.

Find your support network and learn to rely on them. I am lucky enough to be surrounded by the most supportive and loving family in the world. My friends could not be more loving towards me, and they have really helped keep me encouraged and focused throughout my journey. Divorce and my daughter’s autism diagnosis came at the same time in my life, and I can honestly say I don’t know how I would have made it through without my family and friends. I had to learn to reach out when I felt overwhelmed and be honest about my feelings. To ask for help when I couldn’t handle the day’s challenges. Online support networks have been so positive in my life. I have met incredible friends through them and I love seeing their kids’ pictures come up on my social media feeds. I’ve learned valuable lessons from them, and I know I am not alone on my journey. There are people in the world who understand and care; don’t be afraid to find them and rely on them.

Enjoy all the little things, every milestone met, every quirk your kid may have, every smile, every hug. My daughter is the happiest little girl you’ll ever meet. She fills my days with renditions of her favorite Disney songs, belting them out to the top of her lungs. I recently taught her how to give eskimo kisses, and on my tough days, when she brings her little nose to my face, I just know we’re going to be OK. I don’t have all the answers; I’ve learned that I just need to take my life day by day. Every time she learns a new word or expression, we have a huge celebration in our household. She has brought a type of love to our family that is fierce and full of joy. So, even though I may be a single parent at the moment and not have someone to call my love, I am not short of it at all. My world has become a beautiful place of learning and growth.

So from one single parent to another, let’s go forth and conquer the world with love and advocacy for our little ones!

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What I Wish My Mom and I Talked About When We Talked About Bullying

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People didn’t know about Asperger’s when I was a kid back in the ’60s. My parents were very kind and loving. I miss them both so much. My mom was a social butterfly, but I took after my dad, who was shy and might have been on the autism spectrum but undiagnosed.

One day I told my mom about how I was constantly bullied. Back then, there wasn’t much information about bullying, and certainly no internet! So my mom, drawing from her own experience, told me to just ignore them. I wasn’t quite sure how to do this, but was nevertheless willing to try.

Next day during lunch, the kids started singing the same unflattering song they made up about me. I tried to ignore them, but they sang louder. I tried to laugh, which came out like a strangled sound. Unfortunately, they didn’t stop though I think perhaps I gave them a closer look at the human psyche and food for thought. The bullying continued for years after that.

If I could go back in time, I would instead ask my mom to please explain to me why they teased me. Even back then, I sensed that such understanding would have set me free, although I didn’t know how to say this. If I at least understood there was nothing wrong with me, that I wasn’t inferior, and their jeers came from insecurities and social pressures, then I could have seen through their bravado and not felt so bad about myself for so many years.

To my socially savvy mom, those social insights were probably as obvious to her as how the sun rises at dawn. I suspect she didn’t realize I couldn’t fathom those things.

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My Children on the Autism Spectrum Are Unique and Amazing

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I have two kids with autism. They are both so different but also similar in so many ways.

Our days have their ups and downs, but some things are the same. The schedules that give my son his security and ease his anxiety. The rewards and instant gratifications for small things done, things that may seem trivial to some but huge to us. The rigidity of how things go, the talking about the same thing over and over. The going to multiple stores looking for the only Dino nuggets my son will eat. Blowing bubbles in his sensory room, and laughing when he swings.

It’s meltdowns when something isn’t how it’s supposed to be. It trying to step into his world and be what he needs, comforting him and make him feel secure. It’s weighted blankets that help him calm and watching him find the smallest space he can squeeze into to feel secure.

It’s trying to understand them. Trying to help in any way I can. It’s going into their world, and not always expecting them to conform to my ways.

It’s my daughter who’s a teen now, still learning how to read people and live in a world that’s confusing to her at times. It’s her going into her own world and getting lost in it and her areas of interest.

It’s her beautiful smile, the kindness she has for others. Her empathy and genuine concern for all things, people and animals. It’s watching her draw, and the pride she takes in it. It’s her using her own voice to get what she needs.

It’s the progress she has made in school. It’s the independence she has gained. It’s her walking to each class independently, it’s her riding a big bus for the first time this year, it’s her remembering to wear her choir shirt on a certain day. It’s also the hard days, the meltdowns, the stress and overwhelm.

It’s rigidity and obsession. It’s talking about one thing over and over. It’s her drawing eight hours a day and refusing to do anything else. It’s me worrying about her adult years.

It’s watching her sing a solo for choir beautifully when a few years ago she could hardly go to music class. It’s listening to her talk about going to college. It’s never giving up, it’s always striving, it’s watching her surpass all expectations they had for her when she was diagnosed at age 7.

It’s her becoming an amazing young woman. It’s watching her become her biggest advocate. It’s watching her shine.

My children are both unique and amazing. They both have autism, they are different and that’s why it’s called a spectrum. It’s a beautiful spectrum, and it’s what makes each individual unique. I’m proud to be their mom. I couldn’t ask for better kids.

Autism is not our whole life, it’s a part of it and we embrace it for what it is and what it brings to our home. Autism is a piece of our puzzle. I’m thankful for what it has taught me, what it has shown me about love.

We are blessed.

three children with arms around each other, standing in front of boulder outdoors
The author’s children

Editor’s note: This story has been published with permission from the author’s children.

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11 Things I Want People to Know About My Daughter on the Autism Spectrum

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My daughter, Charlotte, is autistic.

Since her birth in August 2013, Charlotte has made a monumental impact not only on myself, but on the lives of those around her. Sometimes, however, people may be unkind, sit in judgement or fear because Charlotte may behave in ways most people do not generally understand or accept.

This is something I am learning, and something I am working hard to change. I know I will never change the attitudes of everyone as some people might remain ignorant. I see that as their choice. Their loss.

To those who are genuinely trying to understand our journey,these are some things I’d like you to know.

1. Don’t feel sorry for us.

We don’t feel sorry and neither should you.

I know the immediate reaction when somebody says they are ill or in pain can be to say, “I’m sorry,” but that’s not what’s happening here. Charlotte does not “suffer from” autism. It is not a disease. It is a disorder, and there is a big difference.

2. Autism spectrum disorder (ASD) cannot be “cured.”

I often hear “eliminate gluten from her diet,” or “take her to an acupuncturist,” when people learn Charlotte is autistic. While perhaps the advice is well-meaning, it is nevertheless misguided. I am open to trying most things, so long as the risks do not outweigh the benefits, but I need to be very clear about this — ASD is a neurological condition. It cannot be “cured.” Nor does it need to be.

3. Just because I admit it’s not easy, doesn’t mean I don’t love my daughter.

I often shy away from sharing the reality of parenting a child with a disability, not because I don’t want others to know or because I am ashamed of my little girl in any way, but because I am hesitant I may be judged or misunderstood. My general response is to shrug off any question of, “how do you do it?” deflecting with something along the lines of, “she’s so worth it.” Which is true. Incredibly true.

What I don’t say, and what is also true, is that sometimes it is not easy. Parenting isn’t easy. Parenting a child (or adult) with a disability just adds a whole extra layer of complexity. If I admit that sometimes this isn’t easy, I need you to know it is not a reflection of my little girl or how I feel for her. Admitting we have bad days is just admitting I am human. We all have bad days. It doesn’t mean I don’t love my daughter more than any amount of words can truly express.

4. ASD is a “Spectrum.” It varies widely.

As the name suggests, ASD is an incredibly complex neurological condition which has a huge scope of factors that are relevant to some and completely irrelevant to others. Just as you and I have differences, preferences, and unique ways of seeing the world, so do those with ASD.

5. Autism is not something my daughter will grow out of.

She is a child with autism who will grow to be an adult with autism. Sometimes it seems there is more tolerance for children with autism and other health challenges than there is for adults with the same diagnosis. Children with autism grow to be adults with autism. Their neurological makeup will not change. Who they are will not change. Nor should it. Everyone needs understanding, no matter their age. No matter their condition.

6. Maybe the world needs to be more tolerant.

My daughter does not need to change. Since Charlotte’s diagnosis, we have been bombarded with information about how we can make Charlotte conform to societal norms and expectations. There are many societal norms that Charlotte doesn’t understand, and I struggle to see how I’m supposed to claim I accept her for who she is if I’m constantly being told to try to change her.

While I acknowledge there are some things we need to reinforce to keep her safe, there are many things that are merely for the comfort of others. Eye contact is a classic example. It is not necessary for communication. We can communicate effectively without it.

While we are encouraging Charlotte to make eye contact, we are doing so mindfully and compassionately. Ultimately if it distresses Charlotte, we will not pursue it. We praise her for moments of eye contact and are genuinely grateful for those special times.

7. A behavior that seems out of place to you might have a very real place in the life of someone with autism.

I remember when Charlotte was still a baby, she started shaking her head from side to side. We thought it was a phase she would grow out of. We thought perhaps it was due to her hearing loss (as Charlotte also has permanent hearing loss in her left ear), and she was experimenting with how she hears sound, and in turn, experiences the world around her. Looking back, I can now see she was “stimming” (self stimulating or sensory seeking behavior) from an early age. She will be 4 in a few short months, and she still shakes her head regularly. She often closes her eyes to increase the impact of the sensory experience.

It may seem like an “odd” behavior, but it’s calming to Charlotte, and it is another way of expressing herself. It is not different in our world, and there is no reason why it should be “odd” in yours.

8. Just because Charlotte cannot speak with words does not mean she doesn’t have anything to say.

When I mention Charlotte is nonverbal, some people immediately assume she might have an intellectual disability. Many assume she’s like a baby, and treat her as such. Charlotte is not a baby. She is clever and coy, funny and caring. She has a lot to say, you just have to be willing to understand and observe.

A sideways glance from Charlotte says what words could. The combination of a look, body language and actions communicate what a verbalized sentence could.

The greatest need for interactions with Charlotte is time. Take time to sit down with her, be gentle with her, talk to her like any other little girl, and wait for a response. I guarantee there will be one. It may not be immediate, it may be subtle, it may not be what you expect, but it will be there.

9. Different interests are not wrong.

Charlotte has often had different interests to other little girls and typical children her age. She doesn’t play with dollies or understand dress-up. Typical toys in typical ways often hold little or no interest. Give her anything new and in all likelihood she will interact with it the same way she does with most new things — she will feel it, bite or lick it, and turn it over and over. This sequence of events is highly misunderstood. It is actually a clever way of interpreting the world for a little girl whose sensory systems seem all jumbled up.

While playing with a doll may hold little appeal, she loves nature, and finds time outside soothing. She could spend hours feeling the breeze in her hair and tearing up leaves and grass. She loves water, and could spend all day splashing it or kicking her legs in it while she lays on her back. These behaviors and interests may be a little different to what is typically expected, but that doesn’t make them wrong. It just makes them different.

10. Sometimes we feel lost and helpless, too.

We are all learning. There are many times we get it wrong. We don’t have all of the answers, all of the time. We are still learning to interpret Charlotte’s behaviors, identifying her needs and ways we can best meet them. It is a process. It takes time, and patience, and compassion.

We aren’t experts, we are just people willing to learn and doing everything in our power to understand our beautiful little girl. We don’t always get it right, but we persist. It is our openness to difference that is our greatest asset. Our daughter has given us that understanding, and for that, we are eternally grateful.

11. Charlotte is more than a label.

Please don’t make assumptions based on what you think you know. I can’t begin to tell you how many times a doctor or carer reads Charlotte’s file and forms assumptions based on those labels. They see words such as “autism,” “nonverbal,” “not walking,” “global developmental delay” and “chromosomal abnormality.” They see “hearing impairment” and “vision impairment.” They immediately paint a picture of a child who can’t move, can’t communicate, can’t interact. They paint a picture of a child with no personality, and nothing to give.

If there is one thing you take from this post, know this: everyone has something to give.

Everyone.

We just have to be willing to look, listen and interact without judgement. We have to be open to gifts given in unconventional ways. Charlotte may not speak with words, but she can communicate. She may be a little girl, but she has a big personality. She is fierce and determined, but she is also soft and kind. She will sit beside you, and her warmth will envelop you. She will unexpectedly reach for your hand with such softness, and hold it so gently, so carefully, as if it were the most important thing in the world — and in that moment, it is the most important thing in her world. When she gives, she gives abundantly. She gives everything, all of her. Unquestionably. When she looks into your eyes, her eyes seem to pierce your soul. Sometimes the intensity of her gaze takes my breath away.

No, Charlotte is not a sum of labels. She is the most complex and incredible gift who I am proud to call my daughter. Part of me lives in her, and I find that to be the most incredible and humble knowledge of all.

We are human, first and foremost. Difference is not something to be feared, rather it is something to be embraced for the incredible gift that it is.

Follow this journey at the We and Us Blog.

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