Why I Hate Functioning Labels

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I am an adult with autism, raising a son with autism.

And I hate functioning labels.

I do. I despise them. I don’t care for labels at all, but as an autism parent, I do understand how these labels get our kiddos the help they need.

But really… functioning labels are the worst. They’re designed to show where our children are on the spectrum, but they’re actually limiting our kids.

Here’s an example.

My son, Liam, has been diagnosed by four doctors as having autism — as well as bipolar disorder and many other things. (He has a full plate.) Two doctors said he’s high-functioning. The other two said he was moderate.

Why two different functioning labels? Let me tell you. Liam’s IQ is 120.  He tests gifted in math and vocabulary. But his reading comprehension is bad. He can read to me, but he can’t tell me what he just read. He’s considered “learning disabled” in that area. Even though he spoke early, his speech was so hard to decipher that it was considered a speech delay.

So it would seem that based on his IQ and some of his test scores, he’s high-functioning. But, based on his disabilities and behaviors, he’s moderate.

Liam has also learned to pass. For those of you not familiar with the term, “passing,” it’s when a person with autism is able to pass as “normal.” There are some days where Liam can play with his peers or be in a public setting, and no one would know he’s on the spectrum. But before long, passing becomes too much work, and a meltdown ensues. There are also days where he doesn’t even try to pass. It seems at 8 years old, he’s realized that, around the people who accept him most, there’s no need to pass.

So you see, Liam is literally all over that spectrum. He doesn’t fall into one convenient slot. And the more parents I’ve spoken to, the more I’ve learned that Liam isn’t alone. So why do doctors and therapists insist on using these functioning labels?

Autism isn’t a competition.

I don’t care where you or your child fall on the spectrum. My child doesn’t care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same.

So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was “high-functioning.” No. I don’t consider myself high-functioning. I’m simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

Basically, my autism is my autism. Liam’s autism is his autism. And your autism is your autism.

This post originally appeared on My Life With My AuSome Son.

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Autism Haunts My House 365 Days a Year. And I'm OK With That.

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I hear footsteps, crashes, doors opening and closing, voices and strange noises on a regular basis. I’m often jolted from my sleep in a panic. I’m unable to locate objects or find that they have been moved. I often find things inexplicably broken.

Yes, my house is haunted – it has been for years.

In the movies, we often find ourselves wondering why the families do not move out of their haunted houses. Why do they subject themselves to the stress and anxiety of living with ghosts? Who would want to live in fear, waiting for the next haunting to occur, always on edge and unable to fully relax in their own homes? Why do they stay?

For me, the answer is simple. Moving would be pointless, there is no eluding the ghosts. They haunt me wherever I am. Even in solitude, there is no reprieve, for I know the phone can ring at any moment. A single call can rip me from a seemly normal routine and turn my day upside down.

Several years ago, I used that analogy to describe to a friend what it is like living with autism. I’ve never been able to come up with a more accurate description of my home life. I live with a heightened sense of awareness, constantly monitoring my environment for unexplained or unwanted noises and even silence. For I know from experience that any of those things could mean disaster. The unexpected is expected – it’s only a matter of time.

Among other thing, over the years, those unexpected sounds have included broken lamps, a TV being pulled off the stand, leather furniture being punctured with a candlestick, broken glass on a fireplace, the pool cleaning brush breaking out the screens of the pool enclosure, a stuffed animal being sucked into the pool pump system and a $12,000 flood.

If you’re the parent of a child with autism, you know exactly what I am writing about. Being jolted from our normal lives is our normal life. We are constantly on edge and alert. Even sleep, when we get it, brings little relief. Being jolted in the middle of the night is a common occurrence.

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My favorite ghostbuster.

It’s not surprising to learn that many parents suffer from depression, anxiety attacks and even post traumatic stress disorder (PTSD). We never fully turn off from our commitment and responsibilities. We’re on call 24 hours a day, seven days a week, 365 days a year, and it never ends.

While I’m “haunted” less frequently now that Mike is older, I’m no longer “living with the ghosts.” Simply put, we cohabit. I’m unaffected and unfazed by situations that would cause most people to run for the door. For me, accepting cohabitation was the only way I could gain control and achieve happiness. It was a choice to let go of being irritated by the accommodations one must make to live in a haunted house. By making that choice, I’ve been able to find my happiness within his happiness, even when it inconveniences and/or annoys me.

I’ve accepted that my house will always be haunted. I’ve been able to exercise the most annoying ghosts and even enjoy some of them. Thankfully, for now, the ghosts have not been as startling, but who knows what tomorrow might bring? See that is the thing about living in a haunted house – you never know what will jump out to get you next.

This post originally appeared on Autism Hippie.

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This 2-Minute Film May Help You Understand the Mind of a Child With Autism

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The world of a child with nonverbal autism is one that no one but that child can fully understand. However, these two filmmakers have made an attempt to offer the world a small glimpse into what life might be like for children on the spectrum.

Marisabel Fernandez and Alexander Bernard created a short film called “Listen” for their Ringling College of Art and Design senior thesis, according to their Vimeo description. The film delves into the mind of a girl with nonverbal autism using shapes, colors and sounds to try to articulate feelings of sensory overload and misunderstanding.

“Our wish with this piece is to give a glimpse into the lives of children living with autism,” the description on Vimeo reads, “and, in any way we can, to inspire positive change through a deeper tolerance and understanding.”

The filmmakers also qualify that, as autism is a wide spectrum with complex and different experiences across it, “Listen” is just their interpretation inspired by research and time spent within the autism community.

Recently, the two-minute-long film won Fernandez and Bernard the Grand Prize in the 2014 Adobe Design Achievement Awards, according to PR Web.

Watch the short film “Listen” above.

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Living With Autism: Why I Hate Talking on the Phone

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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.
Thanks.

This post originally appeared on Snagglebox.

 

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

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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.

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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.

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

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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.”

“Oh.”

“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.

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

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He’s learning how to lead.

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He’s learning how to be kind and patient.

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He’s learning that normal is overrated.

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

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This post originally appeared on Glass Half Full.

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