Living With Autism: Why I Hate Talking on the Phone

It’s not an exaggeration to say that hearing my phone ring fills me with an overwhelming cocktail of dread, fear and panic.

Calling someone is a million times worse. In fact, most of the time I physically can’t do it. It’s as if the phone is encased inside a solid brick wall, and there are very few situations in which I’m able to break through. I’m not even entirely certain I could do it in an emergency. I know I would definitely rather go hungry than phone for a pizza.

The reasons for this reaction are complex. Lots of autistic people find using the phone unpleasant, but most of the solutions I’ve read focus on the social complexities and anxiety of initiating conversations with people you don’t know. And while there’s certainly an element of that in my discomfort, I don’t think it’s the whole story. At least for me it’s just not that simple — I hate using the phone with everyone, including people I know really well.

From chatting with other autistic people it seems that I’m not alone in that. There’s obviously a lot more going on than just social difficulties, and the solution is more complex than just making people practice. So I thought it might be useful to explain some of the other reasons why I find the phone so difficult and even painful to use.

There’s too much attention.

Without the discomfort of eye contact, you might expect that speaking over the phone would feel much more relaxing than doing so in person, right? But it feels just as overwhelming for me and leaves me feeling perhaps even more vulnerable.

And that’s because on the phone I feel trapped — someone wants something from me and there is nowhere to hide. Their full attention is directed my way, as if there’s a big fat spotlight shining directly at my head. This focus can be extremely exhausting, and I can only keep it up for short periods at a time.

It’s sudden, unexpected and unpredictable.

A ringing phone feels like an invasion, as if someone has just stepped into my house without warning. I don’t know who it is or what they want from me, and at that moment, the not knowing is unbearable. Thinking that my phone could suddenly start ringing at any moment is stressful for me, like a random social connection without any preamble or context.

When I’m making a call and waiting for someone to answer, listening to the ringing phone is like turning the handle and waiting for the jack-in-the-box to burst out. Not knowing whether or when someone will pick up is just really nerve-wracking… and there are only two options, each as awful as the other: someone will pick up or it will go to voicemail.

Voicemail is the worst. Talking to nobody feels so uncomfortable that I can almost never bring myself to do it, but I know that if I don’t leave a message I’ll have to go through it all again… argh! The pressure to decide before the beep freaks me out, and I almost always hang up.

It requires language processing without visuals.

Visual input helps me to process auditory input. When someone’s talking to me in person, I read their lips to get the added context and anchor the sounds so that I can interpret them. Without that visual I get lost in the rhythm and cadence of the isolated voice. The tones are translated in my mind not as words, but as waves of color that rise and fall and loop and bend… so focusing on spoken words without a corresponding visual is very, very hard work for me.

It relies on verbal communication.

Words are the focus of a phone conversation. They come with so much pressure to respond, and it’s always verbal. When you’re face-to-face you can at least nod or smile to show that you’re paying attention, or use other non-verbal stuff to cover the gaps when your auditory processing is lagging or you’re finding it hard to access language. On the phone any silence is incredibly noticeable and really, really uncomfortable.

And I can’t wave my hands around for emphasis like I usually do, so I have to use exaggerated tone and inflection to make the same point. There’s also the need to speak clearly, and both of these things require a great deal of effort.

I’m also a chronic interrupter. I’ve worked really hard over the years to try and stop myself from talking all over other people, with only limited success. I’m constantly misjudging when it’s my turn to speak, and on the phone it’s even harder for me to figure that out. Reading emotions is also a thousand times harder over the phone, when most of the evidence and context are obscured. So it feels like there are just a lot more opportunities for misunderstandings.

It feels unnatural.

Without the visual presence of the person I’m talking to the phone can often feel like talking to a machine or out loud to myself, which is just… weird. So the whole thing has a quality of play acting about it that feels super uncomfortable to me.

Sensory issues.

Last but certainly not least, it physically hurts to hold the phone next to my ear. Keeping my hands still when I talk is a challenge, and the sensory onslaught of the sound directed right into my ear canal at varying volumes and inconsistent rate can be overwhelming after only a few minutes.

All of these reasons just seem to add up to an overall feeling of my body screaming at me that something isn’t right, which makes it hard to break through that invisible wall that seems to encase my phone.

Things that help:

There are a few situations in which I can use the phone with a lot less stress. One of them is calling to make an appointment of some kind, probably because I know in advance exactly how it’s going to go and what’s expected of me. There’s a script I can follow and things happen in a predictable way, and that takes the pressure off.

It’s the same with any call that’s a simple exchange of information – can you tell me what time you close, do you sell Apple products, here’s my credit card number – that kind of thing.

Obviously I vastly prefer to communicate via texts or email, so I use these wherever possible. If I can’t do that, then it helps if people text me to let me know that they’re about to call. It also helps me to let calls go through to voicemail. That way I know who it is and what they want before we start talking, and I have time to get my thoughts together. There’s also a chance I might not have to call them back or can reply via text or email.

None of these things make using the phone easier, they just make it slightly less sucky. For the most part I will do whatever I can to avoid making a call – that means if you don’t text me or have an email address then I’m probably not going to contact you, at least not until I absolutely have to!

So that’s the story with me and the phone. I leave you now with the profound albeit paraphrased words of Carly Rae Jepsen.

Hey, I just met you
and this is crazy,
but here’s my number
and I would really appreciate it if you never used it.
Unless you’re texting.
Just don’t call me.
Like, ever.

This post originally appeared on Snagglebox.



This Is What I've Learned From Working With Kids With Autism

I’ve recently come to realize that I don’t have time in this precious life for negativity.

I don’t have time for negative thoughts and negative people.

I don’t have time to tear myself apart in the mirror every morning or obsess over things I don’t have time to fix.

I don’t have the air to spare from my lungs to waste discussing matters that won’t change the world.

I don’t have the energy to spend on you if you’re not going to put fourth 100 percent equal effort on me.

Because let me tell you…

I have this little girl who looks at me like I made the moon.

woman and little girl with autism smiling

And I have these twins who tell me they miss me for every single day I’ve been gone.

And I have these kids who I haven’t even met yet, but they’re counting on me to change their world.

And I have this little boy who I miss so much, who needed me to be his voice.

And there are thousands of other kiddos who need me to help them find theirs.

And let me tell you it’s not easy. It never has been.

And I spent a long time being negative about everything around me and being filled with anger and disappointment over things I can’t change or control.

And being me has been damn hard for as long as I can remember.

But I have worked so hard to get to where I am and to be this person who I’ve allowed myself to be.

And I decided a long time ago to not let the opinions of others change the way I choose to live my life.

And I refuse to let you take that away from me or make me feel like what I’m doing isn’t amazing, because I know it is.

I know I am doing something great.

I know that I have the ability to change the world.

It’s a good life.

'When He's Older and Doesn't Have Autism Anymore...'

I haven’t stopped thinking about it.

Keegan, my 9-year-old, said something a few days ago. Something unexpected. Something that caught me off guard, then made me a little sad, then made me shamefully wish for the impossible, then made me snap back to reality, then made me think. A lot. Funny how 9-year-olds, although full of attitude and sass, can unintentionally give you some much-needed perspective.

Keegan recently got his first yearbook, and he’s very proud of it. He takes it to school every day because he and his friends like to look through it together. I mentioned to him how much fun it will be to look through as he gets older. He told me, “Maybe I can show it to some of my relatives, like Grandma and Grandpa and my cousins.”

And then he said, “And when Easton is older and doesn’t have autism anymore, I can show it to him.”

I felt a knot in my stomach.  “Easton will always have autism, Keegan.”


“But, you’re right, when he gets older and can understand it a little better, you should definitely show it to him.”

And that was the end of the conversation.  It was 6:30 on a Monday morning (deep thinking should not be allowed at that time, on that day). I needed to finish getting Easton ready for school and head out the door.  But first, I stepped into the other room and quietly told my husband what he had said, then realized I was choking back tears. I swallowed them, took a deep breath and went about my day, his words in the back of my brain: “When Easton is older and doesn’t have autism anymore…”

Throughout all the informal, spontaneous chats I’ve had with Keegan over the last couple years about his brother having autism, I had never thought to tell him these five, very important words: “Easton will always have autism.”

We will help him succeed, we will help him communicate, we will help him learn, we will help him be a kind-hearted, funny, compassionate friend to others. But his autism will never be gone.

But, why wouldn’t Keegan assume that based on things I have told him? “Your brother has autism, which is why he needs extra help from teachers and therapists. We’re all trying to help him learn. We’re all trying to help him talk. We’re all trying to help him understand what’s going on around him.” In Keegan’s mind, I was saying, “We’re helping him get better,” which to a 9-year-old, probably translates to, “We’re getting rid of his autism.”

I have wondered to myself, “What would Easton be like without autism? What if, one day, he just… grew out of it?”  

Am I ashamed that the thought has even entered my mind? A little. But here’s the thing. Doesn’t every parent, everywhere, wish their child didn’t struggle? Doesn’t every parent want their child’s life to be easier, free of bullying, free of communication barriers, free of dirty looks, free of judgment, free of hardships? And, what if it is because that means life would be slightly easier for us, their parents? That it would mean we would worry slightly less about them and how they’re being treated and how they get through their day and what their future holds. That sometimes, I just want to be able to ask him, “How as your day?” or “What did you do today?” and for him to be able to answer me.  That when I say “What’s wrong?” — I want him to be able to tell me. Is that so horrible that we’re not allowed to think or say it?

There are people in the autism community who make parents of autistic kids feel ashamed and guilty for wishing their child didn’t have autism.  Autistic self-advocates who scream “That means you hate us as people!” and “You hate autism? Then you hate your kid!”

Well, I’m calling BS.

I can’t speak for Keegan, but I heard disappointment in his voice — in his “Oh” after I told him Easton will always have autism. Guess what? He’s allowed to be disappointed by that. He sees kids every day, talking and interacting and joking around with their brothers or sisters. He knows his brother is different, and he’s proud of that. But, he also knows he doesn’t have the same type of brother that so many of his friends do. My sons don’t lay in their beds at night, laughing at gross, immature boy stuff. They don’t tell jokes to each other. They’ve never had a real conversation. Keegan wants that; I can tell.

I think he was looking forward to the day when his brother wasn’t autistic anymore, so he could do more with him.

And those are legitimate feelings to have.

I wonder what those same guilt-inducing advocates would to say to my 9-year-old? “You’re disappointed your brother isn’t going to outgrow his autism? Well then, you must be disappointed in him as a human being!”

Here’s what I know, for me, in my life. Autism sucks sometimes. I’ve said the words, “I hate autism.” I’ve never uttered the words, “I hate Easton” or thought,“Easton sucks.” I believe I’m completely allowed to have those feelings, in those moments, just as I’m allowed to be frustrated beyond belief with Keegan’s attitude or talking back or not listening, or whatever it is, that, in the moment, makes me a human being who is tired and irritated and at my wit’s end. I know both my kids drive me absolutely batshit crazy sometimes. And if you’re a parent and you say your kids never drive you crazy, you’re lying — as in, your pants are on fire and they’re hanging from that telephone wire. You are a liar. I know that when Easton is driving me crazy and the things he’s doing that are driving me crazy are directly related to his autism, I’m allowed to say, “Autism is driving me crazy right now.”

I know autism is fascinating and heartbreaking at the same time.

I also know that if Easton didn’t have autism, he wouldn’t be Easton.

I just can’t even envision it. I would miss him. A lot.

And Keegan is learning more things about real life and struggles and hardships and patience and forgiveness and compassion than any textbook or any standardized test could ever teach him.

He’s learning how to play with his brother, who sometimes isn’t the easiest kid to play with.


He’s learning how to stop and feel the water.


He’s learning how to lead.


He’s learning how to be kind and patient.


He’s learning that normal is overrated.


And he’s learning how a sense of humor, above all else, will get you through the crazy moments.


This post originally appeared on Glass Half Full.

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What I've Finally Realized About My Son's Meltdowns

Some things are just tough to write about.

I want to write about them. I know I should.

But with some topics, I have trouble saying what I want to say.

So, bear with me on this one. I’m not sure how it will go. But I think it needs to be said:

Aggressive and violent meltdowns are awful (and that might be the biggest understatement I’ve written).

They are awful.

They are exhausting.

They are emotionally painful, for my son and for our entire family.

They are so scary, for my son and for our entire family.

They create chaos and destruction that takes days to recover from.

People get hurt. Sometimes physically hurt. Always hurt on the inside.

When my son’s meltdowns first escalated, I was beside myself. I was certain it was because I had spoiled him and now he was upping the ante to get what he wanted. Not only that, but everyone else thought that too.

So, we cracked down. We took things away. We grounded. We yelled. We freaked out and melted down right along side him.

And they just got worse.

They intensified and got more and more out of control.


Before I go any further, I want to share a small but absolutely true list of the damage that was physically done in our home during this time frame (leading up to and immediately following diagnosis). I am posting this list because when we were living with daily meltdowns, I thought we were the only ones. I thought my son was the only one this bad. I would’ve cried tears of relief if another momma shared the literal mess her life had become at the hands of her child.

So I am sharing mine today:

  • Numerous holes in walls that needed to be patched and painted again and again.
  • A handheld video game device – thrown with force out of the back window of the car, as we drove down the road and he kicked and screamed. (I’m still so grateful that no one on the other side of the street was injured. It simply fell, was flattened by a few cars, and we were out $179.00.)
  • TV – gone, tipped over and smashed
  • iPad – destroyed, piece by piece.
  • Every single thing in his room – thrown about in a cyclone of hurt and rage and frustration, landing in a sad broken pile (see picture above).
  • Every poster, award and special thing hung on the wall, torn down.
  • Car windshield  – smashed, with a broom, in our garage.
  • Car window – smashed, with his feet, as I drove down the road.
  • His own body – purposefully battered and bruised.
  • My body – purposely battered and bruised.
  • His little brother – sometimes bruised, always completely terrified.


Meltdowns are awful.

I hate them.

I hate that they take over his mind and body, and we all spin.

I hate that he feels such fear in the middle of them and such pain once they have passed.

I hate that once one begins, we can try to diffuse it, but sometimes, it just has to run its course.

I hate them.

They don’t happen as often, not by far. At one point, we had this level of meltdown at least every day and often two or three times a day. Now, it’s only every couple of months.

The progress is huge. We have all learned to breathe again and relax and find joy in the simple ability to function throughout the day.

And so now, when they come, we are almost surprised. It’s like a strange reminder, “Oh you’re still here? I thought you left.”

Yesterday, my son had a meltdown. His room was destroyed. He was incapable of logical, functional thought for a good two hours. My heart pounded, his brother grabbed his little dog and hid, and my son cried, “Momm-eeeeeeee, Momm-eeeee, Momm-eeeee,” as he rocked back and forth, over and over again. The anguish and lack of control was so clear.

All the same emotions come flooding back, and in the moment, I felt a familiar helplessness that breaks my momma heart into pieces.

And, then it was over.

A year later there is a big difference in how we react. We have learned so much, and have had a year’s worth of therapies and meds and books and websites and speaking with other families. We are more practiced, more experienced and more capable.

And, we know that we likely won’t have another one today, and tomorrow, and the next day. We can breathe. We can recover. We can clean up the mess and move on.

That’s the biggest change. When his meltdowns first escalated and became aggressive, we had no idea if they would ever lessen. In fact, we lived each day in anticipation and fear of the next meltdown.

No longer.

If you are a family dealing with this every day, I am so sorry. My heart hurts remembering how suffocating that feels. It can be so isolating – not leaving the house day after day because you never know if it’s going to be safe enough to drive somewhere. Or dropping your child off at school and then picking them up with a sense of panic, as you anticipate what will happen once you get home.

I wish someone had told me all of this. I wish someone would’ve said, “I totally understand. My son has destroyed things too. I’ve been physically harmed by one of the little people I love most in the world. I would gladly die for him, but it feels like there is nothing I can do to fix this.”

So I am saying it to you now.

You are not alone.

Meltdowns are like a dirty little secret that moms and dads and even doctors don’t really talk about. But that doesn’t mean they don’t happen.

You are not alone.

This post originally appeared on Not the Former Things.

The Apology I Owe My Son With Autism

Dear Kreed,

How many months have we stared at your sweet face begging you to tell us what’s wrong? How many days have we wiped away your tears when the pain and frustration is too much? How many years have gone by since you’ve been locked up inside? I stare at you in wonderment now. Communicating. Telling us your thoughts word by word, phrase by phrase.

I can remember laying in front of you begging for you to tell me what’s wrong. Begging you to let me help you. I’m sorry I didn’t know what was wrong. We had to decode your behavior and had less clues to work with than on “Medical Mysteries.” How we wished you could have some words, any words, some way to tell us.

Instead you told us through your anger, your fear and your sadness. You told us through the wounds on your hands, the bang of your head, the pounding of your feet and the tears you would cry. Your silence has been deafening. Your voice lost.

Here you are today, telling me you don’t feel well. Your head hurts. Telling me you’re sad when you remember things in the past. Telling me you’re excited when you do something fun. Turning to a peer and asking her if she’s seen the movies you like. Requesting anything and everything you want. Finally knowing some of your favorite songs. You’ve found your voice. Maybe not in the way we thought or used to want, but we hear you loud and clear now, buddy.

boy smiling

No more silence. No more waiting to hear your thoughts. No more wondering if we will ever know what’s inside of you. You never have to go unheard again. We can hear your voice. And it’s sweet and sensitive and funny. Priceless.

I’m sorry for all the times we’ve failed you, talked about you in front of you like you weren’t there or ignored a communication attempt. I’m sorry it took so long to give you a voice. I’m sorry it took so long to give you a choice in everything. And I’m sorry I didn’t take your device everywhere sooner — you deserve to have a voice no matter where you are, not just when it’s convenient for me.

I’m sorry for not understanding sooner. I’m sorry so many people hurt you in your life and didn’t understand you. I’m sorry some people still don’t understand you and probably never will. I’m sorry for anyone who has ever treated you like you were less, and I’m sorry when I can’t protect you from the people who make you feel that way. I will always fight for you and fight for your voice.

I love hearing your thoughts and your voice. I’m sorry when I get mad and frustrated when you have trouble understanding why you can’t have everything. It’s been a long road to get to here. I will continue to walk beside you and help you and lead you anywhere you want to go.

I’m sorry for when I will let you down in the future or lose my cool, but I promise I will make it up to you and try harder. I promise to hear your voice no matter what, no matter where we are and no matter what we are doing. I promise I won’t let anyone silence you again. We hear you now and will never let that voice go silent again.

We love you for all you are and for who you are going to be. We love you through the silence, through the tears and pain and through your successes and happiness.

I hope at the end of all of this, you will know how far my love goes. Here’s to you, dear sweet Kreed, who has finally found your voice and it is beautiful.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

 This post originally appeared in Kreed’s World.

mom and son smiling at each other

10 Things I'd Tell Myself About Our Autism Diagnosis If I Could Go Back in Time

mom and son smiling at each other Recently a friend of mine asked me to lunch to get some advice about concerns regarding a family member’s child — concerns this child may be showing signs of autism. I gave this person as much advice as I could and went about my day. I left that lunch contemplating what would I tell myself if I could go back four years to shortly after my son was diagnosed.

I thought long and hard, and one of the first things I would tell myself is “Do not cut your hair! You will not look like Posh Spice! Don’t do it!” The second thing I’d probably say is, “Step away from the pie! You’re just going to gain a bunch of weight, which as you approach 40, will be incredibly hard to get off. And the constant pie eating isn’t going to make you feel any better anyway. Put the fork down. Now, before the lightning strikes the clock tower, and I have to get back in my DeLorean and travel back to 2014, I’ve got some real important sh*t to tell ya, so listen up!”

10 Things I’d Tell Myself

1. Stop blaming. It doesn’t matter how or what caused his autism. You’ve got more important things to focus on then the blame game. Above all else, don’t you dare, for one more second, blame yourself. It’s nothing you did, did not do, should’ve, would’ve or could’ve done. You are not the cause. All this mentality will do is drain you down to nothing but a shell of a resemblance of what might be left of a human being. Right now he needs you — all of you. He needs that precious energy, and so do you. He’s on the autism spectrum. Move on.

2. Quit spending countless hours on the internet chasing down that next new treatment/therapy in Timbuktu, which may or may not have worked in 2 percent of kids with autism. Go with your doctor’s recommendations. Listen to the professionals. But above all that, listen to your gut.

3. Pray. Pray a lot. Pray in the car. Pray in the store. Pray before you go into the store. Pray in the parking lot. The prayers don’t have to be an ode to Jesus. They can be as simple as “God, I need you! We need you. I can’t do this without you.” Short and sweet. Just pray. Prayer was, is, and always will be, in my opinion, the most powerful weapon in your arsenal.

4. Laugh. Learn to laugh quickly. Laugh a lot. Laugh at as much of it as you can. It sure beats the hell out of crying. And truth be told, crying won’t change a damn thing anyway. Laughter will be the second greatest weapon in your arsenal.

5. Quit waiting for it to get easier. It’s not going to. You’ll get stronger. You’ll even surprise yourself. You’re a badass. You just don’t know it yet.

6. Quit, quit, quit trying to fix him! He is not broken. Focus on helping him to evolve. Help him, teach him and work with him towards evolving into the person God created him to be. Accept that he (just like “typical” children in this sense) will be who he is. Not some ideal of a picture you had in mind. He is special. He is unique. He is one of a kind. He is who he is. He just needs a little (sometimes a lot) more help along the way.

7. Be patient. Be patient a lot. Be patient in the car. Be patient in the parking lot. Be patient in the store. Learn patience quickly. And I don’t mean just with him. Be patient with yourself, too. You’re not perfect, and you don’t need to have this all figured out. No one expects you too. And you know what else? No one else has it all figured out either! In the end, we’re all just winging it.

8. Avoid Autism Tunnel Vision. Do not make it all about autism all the time. Quit with the “If he didn’t have autism he would/wouldn’t do blah, blah, blah.” While sometimes that may be true, sometimes it’s not. Sometimes he’s naked because he’s a little boy. Sometimes he’s stinky because he’s a little boy. Sometimes he’s cranky because he’s a little boy. He’ll have some good days, and he’ll have some bad days. And sometimes that will have absolutely nothing to do with autism. Repeat after me: “He’s still a little boy.”

9. F*** those ridiculous spreadsheets of what he should be doing by what age his “typical” peers are doing at that age. I firmly believe beyond the diagnosis stage, this is a pointless piece of paper that does nothing but torture your mental wellbeing. Ignore them. Throw them in the trash. He will progress at his own rate — not when Timmy, Tommy, Jimmy or Johnny does. And he sure as hell won’t do it based on what some crap piece of paper says.

10. Get thicker skin. Ignore the stares, the silent glances and the looky-loos. People won’t always be kind or compassionate. Forget them. They’re the problem, not you and certainly not your son. You walk in like you own that store or restaurant, walk in like you both belong there. Because you both do.

11. Brace yourself for curveballs, like when someone says they have a list of 10, and it turns out to be a list of 13… There will be times when curveballs will happen — skills your son will acquire, then without cause or explanation, lose. There will be times you’ll think a certain less-than-desirable behavior is under control, and then — whammo! — it’s back with a vengeance. But you’ll learn this is all part of the ebb and flow of autism. He will progress, he will regress, he will progress again. The curveballs will happen, but you’ll learn to swerve.

12. Look back. I’ve read so many quotes, about not looking back — except in your case, you need to look back. And you need to look back regularly. Look back at how far he’s come and the progress he’s made — the progress you’ve both made. You’ll especially need this reminder when he’s in a meltdown that lasts 15 minutes, when you can look back and remember when they lasted for 45. You’ll especially need this reminder when he’s only eating five or six things, when you can look back and remember when he only ate one or two. You’ll especially need this reminder when he’s only saying 25-30 words and you can remember when he only said one. You’ll especially need this reminder on the days when you’re in a full-blown pity party, and he says (in his own special little voice), “I love you,” when you can look back to a time and remember when that was just a dream.

13. Love. Love him. Love yourself. Love the journey. Above all else, the love is what will keep you going. And here is where you have an advantage above those who have not been on a journey like yours. The love you’ve gotten to experience is unlike any other love you will ever know. It has pushed you, pulled you, damn near broken you, shown you its dark and shown you its ugly, and because of that, it’s the strongest love there is. It has been pushed to the brink and withstood Every. Single. Time.

Real People. Real Stories.

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We face disability, disease and mental illness together.