What My Son on the Autism Spectrum Teaches Me About Himself (and Myself, Too)

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My son Jeorge was 4 years old when he was diagnosed. We already knew he was autistic, as I had been an early years professional for 15 years. To begin with, even with some knowledge, I was scared. What would this mean for Jeorge? Would he ever speak? Would he ever stop head banging and crying, screaming and being afraid to go outside? We felt like we were drowning and out of our depth. I read so many books and researched so much. I worried about dying, something I never worried about previously. Who would look after my darling, precious son? Who would understand his needs, and who would honor him like we tried our best to do?

Eventually, I took the advice to stop reading books and start listening and feeling what we needed as a family. Through the years, we have met many families and people on the autistic spectrum. I learned each of us has our own unique way of being. I believe there is no right or wrong way to live or to support, and no right or wrong therapy or strategy to try.

I stopped trying to please outsiders and their opinions of what we should be doing with Jeorge. Many opinions came to us from all angles, some of which showed a lack of knowledge and true understanding of Jeorge’s needs and reasons for his extreme behaviors, and some of which helped.

Jeorge is almost 11 years old now. He is still nonverbal, and we have offered him various communication tools. He uses them all in some way: PECS, a communication aid, sign language and body language, and a multitude of sounds we now have decoded. I have learned over the years to understand what Jeorge is telling me. I am still learning, and there are things I don’t always understand, but I am getting better.

We learned over the years to fully embrace Jeorge’s quirks and his love of nature, which is easy because we live in rural Wales. We spend as much time as possible in streams, rivers, forests and swimming pools. We also stopped buying him “traditional” toys and instead bought sound and light-up toys he adored. We allow him to spin his toys if he wishes. He eventually stopped head banging as he became more relaxed because his sensory needs were being honored. If he needs to stim, flap, jump, or spin we do not ask him to stop. We have learned he needs to do this for a multitude of reasons.

I am constantly learning about myself. Jeorge is teaching me skills such as patience and letting go of any fears of the future, because Jeorge has taught me to live in the moment. He has shown me how strong I am, how big my heart is, and to see the joy and the beauty in everything.

I believe Jeorge was born the way he was meant to be. We do not see autism as a “disease” or something to be “cured.” The more we watch and listen, the more I think he sees and feels so much more than I am aware of. Alex Lowery and many others are educating us with their own experiences and want to share their perspectives. Thank goodness, for even with the most heartfelt intentions, sometimes non-autistic carers, parents and professionals get it wrong. This is the time for autistic people to be heard. Those who are willing and able to share real insight to autism can build the bridge between two different ways of thinking and being. I do my absolute best every day, even if sometimes things do not work out the way I had hoped. I am sharing our world in the hope that it can offer some guidance to other parents who are on the beginning of their autism journey, a community that can grow and educate.

One day, our compassion and understanding toward people on the autism spectrum will be so much more than it is now.

A version of this post originally appeared on Dazlious.

Image via Thinkstock Images

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21 Songs That Have Helped People on the Autism Spectrum Cope With Sensory Overload

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Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting and much more. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia and post-traumatic stress disorder, although anyone can experience it.

Music is not always a reliever to sensory overload — in fact, sometimes it can make it worse, so you should ask your loved one on the spectrum if playing a song helps or hurts. But for a lot of people with autism, music works wonders when they are trying to calm themselves down. We asked our readers on the spectrum who use music as a tool to share what songs they play if they’re experiencing sensory overload or melting down. We’ve dropped a Spotify playlist at the bottom of this post if you’d like these songs in one place.

Somewhere Over the Rainbow/What a Wonderful World” by Israel Kamakawiwoʻole

Someday I’ll wish upon a star / Wake up where the clouds are far behind me / Where trouble melts like lemon drops / High above the chimney top / That’s where you’ll find me

Ride” by twenty one pilots

Oh, oh, I’m falling, so I’m taking my time on my ride / Oh, I’m falling, so I’m taking my time on my ride

What I Am” by Will.i.am on “Sesame Street”

If what I am is what’s in me / Then I’ll stay strong, that’s who I’ll be / And I will always be the best  / “me” that I can be.

You Are My Sunshine” by Johnny Cash & June Carter

You are my sunshine, my only sunshine / You make me happy when skies are gray

Gravity” Sara Bareilles cover by Alex & Sierra

Set me free, leave me be. / I don’t want to fall another moment into your gravity.

Here Comes the Sun” by The Beatles

Here comes the sun, here comes the sun / And I say it’s all right

Moonlight Sonata” by Beethoven

I Will Wait” by Mumford & Sons

Now I’ll be bold / As well as strong / And use my head alongside my heart

Shake It Off” by Taylor Swift

But I keep cruising / Can’t stop, won’t stop moving / It’s like I got this music / In my mind / Saying, “It’s gonna be all right.”

Bitter Sweet Symphony” by The Verve

But I’m a million different people / from one day to the next / I can’t change my mold

Amber” by 311

Don’t give up your independence / Unless it feels all right / Nothing good comes easily / Sometimes you’ve got to fight

Count On Me” by Bruno Mars

You can count on me like one two three / I’ll be there

Ho Hey” by The Lumineers

I belong with you, you belong with me, you’re my sweetheart

Bliss” by Muse

Everything about you resonates happiness / Now I won’t settle for less

Shackles (Praise You)” by Mary Mary

Take the shackles off my feet so I can dance / I just wanna praise you

(Sittin’ On) The Dock Of the Bay” by Otis Redding

Sittin’ in the mornin’ sun / I’ll be sittin’ when the evenin’ comes

Thank You For Being A Friend” from “The Golden Girls” performed by Cynthia Fee

Thank you for being a friend / Traveled down the road and back again / Your heart is true, you’re a pal and a confidant

Love Me Tender” by Elvis Presley

You have made / My life complete / And I love you so

Wind Beneath My Wings” by Bette Midler

Did you ever know that you’re my hero, / And everything I would like to be? / I can fly higher than an eagle, / For you are the wind beneath my wings.

Hallelujah” by Panic! At The Disco

And if you can’t stop shaking, lean back / Let it move right through ya

Shut Up and Dance” by WALK THE MOON

I said you’re holding back / She said shut up and dance with me

What would you add? Let us know in the comments below?



21 Songs That Have Helped People on the Autism Spectrum Cope With Sensory Overload
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A Letter From Your Autistic Friend

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Dear friends,

You probably don’t understand why I told you I am autistic. You probably don’t get why I told you I have issues with comprehending people or certain things.

Here’s the thing: I did it because “comprehension” is what gets me into trouble. I tend to lose friends because of it. It can cause issues with communicating and understanding things in general. I tell people so they are warned that I don’t do these things on purpose. It’s just a part of who I am, and I have to work around it, but it’s hard to do this. I do my best, but sometimes my best isn’t good enough.

I get things mixed up. Sometimes I don’t even know I do it till it already happens and the person has walked away. I ask that you please try to be patient with me. I am trying. Please remember that it’s not you, and it’s not entirely me — it’s how my brain works. I try to be patient with myself, but it’s harder when my friends aren’t with me. I’m sorry for any misunderstanding that may happen, but please know it doesn’t mean I’m not trying to be a good friend.

There are many things I’d love for you, my friends, to do, but the most important things are these:

I’d love for you to let me know if you feel I am not understanding you correctly. I can’t tell when I am having comprehension difficulties, so I need people to let me know, “Hey, I think you may have misunderstood me.”

I’d like it if you didn’t treat me like a child or think that, just because I am autistic, I am in need of constant help. I can live my life on my own. Yes, there are some things I need help with, but I don’t need constant supervision. Being autistic doesn’t mean I am a child. I’m 23, so please treat me as such.

But most importantly, when things get tough, please have patience. I know things can be difficult, and I don’t expect you to be perfect, but I ask that you try to have patience with me. I know it can be frustrating; it’s frustrating for me, too!

Being autistic is part of who I am. It’s not a “disease,” and I don’t need to be “cured.” Yes, things can be difficult, but I wouldn’t trade it for anything. I just need friends who are patient and understanding.

We autistic people just need a society in which we can be ourselves — and it starts with you, my friends.

Sincerely,
Your Autistic Friend

Image via Thinkstock Images

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Why I Bothered to Pursue an Autism Diagnosis at 63 Years Old

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I’m 63 years old. I’ve spent a lifetime being alone and different, and not understanding why.

I had hoped my autism diagnosis earlier this year would change my life. It didn’t — at least not in the way I expected. No surprise that answers aren’t always solutions.

The good news is I now understand my head-banging and unmanageable behavior as a child, the absence of friends and rejection by adults, the isolation, the missing words and social skills, the depression and anxiety, the fundamental disconnect with the world I live in. It’s no longer my fault. I grieve for the child I was but have forgiven myself for being what always seemed so “broken.” I’ve also learned to forgive the people who walked away when I was young.

My challenges are more understandable now. Those that come with an almost 40-point IQ gap are well-known fellow travelers. I can and will get lost driving places I’ve been to countless times. Directions, maps, locations… none of it makes any sense. Shapes and patterns, unlike numbers, elude me. After all these years, it’s become amusing.

My autism is a new acquaintance. It took two months to schedule an evaluation with a psychologist last winter. Another month passed before I got the diagnosis. I was so overwhelmed during the final appointment that I could only stare, literally at a complete loss for words. Everything changed at that moment… except for me, the one thing I desperately wanted “fixed.”

I was at an autism fundraiser last week. One of the speakers was a parent who had raised thousands of dollars over the years for a “cure.” He was most passionate when he spoke about how the world had completely changed for him when he learned his child was autistic. All I could think was that the world hadn’t changed for his son any more than it had for me.

I still don’t remember things I need to do without a written list carried in my hand, taped to my phone, or sticking out of my shirt pocket. I still forget bills and other papers if someone moves the pile I keep them in at the breakfast table. I’m still speechless with more than one person because it takes me too long to think of something to say. My meager collection of conversation starters still runs out too quickly. I still need to get lost in a book or simply lie down and shut out the world to calm down. I still struggle to make friends.  

What has changed is that I understand my autism as a different way of being, not a deficit, disorder or disease in search of a cure.  

Just a different way of experiencing the world. Yes, I have some challenges, but I’ve always had them. I also have gifts that enrich my life in ways I never really appreciated before. Logic, focus, determination and an abiding calmness. A love of numbers and words that made up for my workplace foibles and helped me have a career. I may have no words to describe my feelings or emotions or the compassion I can feel, but they surge under the surface, are genuine and can overwhelm me when least expected. I love deeply, even if it’s reserved and not obvious at times.

My son asked why I would bother to be diagnosed at such a late age. It’s taken six months for me to answer his question. My diagnosis has completely transformed my life, not by fixing it as I hoped, but by explaining it. Understanding has helped me begin to let go of the pain and disappointment from childhood, to have reasonable expectations of myself and the people around me, and to learn to like myself just the way I am. It also has helped me find a community of people like myself who are reaching out for friendship, acceptance and affirmation. I’m not alone.

As I said to my wife not long ago, I’m seriously at risk of being happy for the first time in my life. Not a bad diagnosis at any age.

Follow this journey on Lost Words.

Image via Thinkstock.

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How Luna Lovegood Helped Me Accept Being Autistic

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In my childhood, there were a few characters from books that helped me not only find myself but accept myself for who I am: autistic and quirky! One of them was Luna Lovegood from the Harry Potter series by J.K. Rowling.

As a child who was often the outcast and the target of many bullies due to being “different,” I identified with Luna. I loved that she accepted who she was and that, no matter what the bullies would do or say, she’d keep her chin up and use it to teach others, or as a learning experience for herself. She never looked down on herself for being quirky and different. I loved that about her because, unlike myself, I couldn’t get over being different. I wanted so desperately to be “normal.”

The thing is, instead of being viewed as quirky, I was viewed as the weird child in school throughout my life, and Luna embodied what I wanted so desperately to be. I felt like she was my best friend (I knew she was only a fictional character), but I felt like I understood her so much that I knew her personally. I would read and read and tell myself that one day, just maybe, I would accept who I am and become like Luna.

Being autistic is just being myself. I am now 23 and have just barely grasped that. I was and still am very much like Luna with my characteristics. The only difference? I have now accepted myself. Thanks to the help of the Harry Potter gang, I got through one of my deepest bouts of depression I had as a child (I also have PTSD).

I remember one day after school, after being bullied so much I felt I had nothing to continue living for, I came home to a package on my bed. This heavy, bulky package. addressed to a Lady Arianna Nyswonger, from my favorite, loving, biggest-Harry-Potter-fan uncle, was the seventh and final Harry Potter book. Through a stream of unending tears I opened that package and grabbed the book. I stroked its binding, and I remember telling myself, “I can get through this, I know I can. Just one more year and I am done. Just like Harry and the gang and Luna, one more year.” It was my senior year, and I was having a rough time with it. I immediately opened the book and started reading, losing myself in its white pages and the gifted words of a fantastic storyteller. I soon forgot why I was so upset and the thoughts of “giving up” and just “ending myself” were completely lost within the typed out words. Harry and his story helped me, but Luna helped me the most. Anytime she’d show up in the book, I would get excited — it was someone I could finally relate to. Luna was me!

Every day after school, I’d pick up the book and read. Through tears, I’d battle my own demons just through reading this book. Harry defeating Voldemort was me defeating the person inside telling me to quit. It was me defeating the bullies who constantly brought me down. It was me defeating myself, the part of my wanting to quit and die.

Hogwarts was my home during my childhood. I have been there since the beginning, and it’s been there for me. It’s helped me through my deepest, darkest times when I thought there was no hope. It gave me someone I could relate to. It helped me accept me. And for that, I can never repay J.K. Rowling. She gave me a safety zone, somewhere in my mind I could go to get away. She wrote a character who told me people would accept me if I just would be me, that the haters can hate but they can’t change you. She wrote a character who helped me become who I am today: a writer, an activist, a blogger and most importantly, myself.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

Image via Facebook | Harry Potter

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Siobhan Ronan.

How Getting an Autism Diagnosis as an Adult Opened Up a New World for Me

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I never knew why, but I knew I didn’t fit in.

Other people seemed to recognize it as well. I struggled throughout my childhood –- trying to make friends and then maintain those friendships proved mostly impossible. I gathered a handful of friends over the years who thankfully liked me for exactly who I was, even if I was a bit of an oddball at times.

I spent my childhood trying to figure out a world that didn’t make sense to me. Everyone seemed to know a secret innate language that I could never quite translate. This left me outside of most social groups, and led to a lot of anxiety and self-hatred. I couldn’t understand what was wrong with me. Why was I rarely invited to birthday parties? Why was everyone else more likable than me? Despite this, I managed to pass as being on the weird side of “normal,” and neither my parents or teachers realized what was going on.

Fast forward to my teenage years, and my coping mechanisms stopped working effectively. I was constantly overwhelmed and stressed by the increasing expectations placed upon me socially, emotionally, and academically at school. Friendships became more complicated, I started having romantic relationships, I was taking more advanced classes and I just couldn’t keep up with everything anymore.

Trying to “pass” as being just like everyone else really took a toll on my mental health, and I started to use self-destructive coping mechanisms, including self-harm. I managed to hide my growing mental health problem until I was 19, when my dad died and I spiralled out of control.

I had a crisis at 19, and that was when I first stumbled across autism online. It seemed to link everything I’d ever experienced together. I made an appointment to speak to my doctor, but unfortunately he laughed at me, exclaimed there was no way I could be autistic, and sent me on my way with a referral to the mental health team.

I tried to push the idea of being autistic to the back of my mind, and after an assessment I ended up with the diagnosis of borderline personality disorder. While this didn’t explain everything, I accepted the diagnosis and went to the suggested therapy group. It did nothing. At that point I started to reassess the likelihood of being autistic, and I changed doctors and got my referral.

The waiting and assessment was stressful, but I finally had it on paper that I was autistic. The assessors even commented on how there was no evidence of me having borderline personality disorder. Getting this diagnosis opened up a new world for me –- not only could I access more support if I needed it, but it explained why I had struggled with so many things throughout my life. It explained why I view the world differently than my peers, and why I understand things and feel things in a different way.

Mostly, getting my autism diagnosis freed me. I could finally forgive that sad little girl who hated herself so much because everyone else seemed to.

If you struggle with self-harm, you can text the Crisis Text Line by texting “START” to 741-741.

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