Painting of young woman with green background.

In an earlier post titled Autism is Not My Disability I said:

“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me unable to function. The disability is society’s misunderstanding of Autistic people.”

Although I still agree with my previous statement, I’ve been rethinking this title lately and feel a strong urge to elaborate. First I want to clarify that there are parts of autism that are disabling.

We can have mental disabilities, epilepsy, IBS, anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not autism – because they differ so widely in all of us. I consider them unfortunate side effects Autistic people encounter too often.

These things are true disabilities and are often invisible – so when I say autism is not a disability, I mean autism as a way of thinking in itself is not a disability. This does not mean many Autistic people are not disabled. I wish it weren’t true, but many of us are.

Personally, I am not sure if chronic illness will eventually leave me unemployed and unemployable. It is a constant fear as I scramble to get my health under control. Doctors are apathetic and if you’ve learned to act “normal” people doubt your diagnosis every time you mention it.

There are certain things I need help with, some simple accommodations that make my life easier. In work and in my personal life I tend to ask for the following, although people sometimes accuse me of being difficult:

Sit somewhere quiet. At work I may wear headphones with music or ear plugs. Working from home is also a great option. My ears are so sensitive they pick up everything. I can’t focus on one conversation or catch all the words in a loud, busy room. I like calm restaurants or off-peak times.

Sit somewhere with gentle lighting. I need natural light without glares and certain soft artificial light. Modern office light is the worst. The wrong lighting or lots of glares makes me feel sick and hurts my eyes and brain. If I can’t escape I may put shades on or wear a hat indoors.

Ask for or make a plan. I like to know what’s happening and am honest about not enjoying surprises. I also need to know when things will end. Sometimes I may choose to stay late; if not, having an end time helps me to relax.

Say no to people. I am not a social person and can’t take a lot of going out. Socializing drains me like nothing else. Now that I work full time, I have a hard time going out more than a few times a month. I say no to people more than they are used to, but my health is important to me.

Try to get everything in writing. I have a hard time following verbal directions. Autism does impair some of my face-to-face communication skills. I also have impaired short-term memory and executive functioning. When I ask for someone to put something in writing for me, it is one of the most important accommodations I ask for. My reading level is far above what I can take in though speech. This helps ensure I don’t skip any important details.

Still people say – Special treatment. It’s not fair for you to get special treatment.

If I am lucky people oblige me, however I sometimes get a lot of push back.

I feel like these accommodations are reasonable. When I have these things, I am able to function at an optimal level. Without them I end up struggling to keep up with the basics. If you give me just a little, I can go far.

I think differently and go about things in a different way. On my own this has never been a problem. My problems only appear when other people insist upon me doing things their way, insisting I do things like everybody else.

They can’t see my disability and think I am asking for an easy way out.

They can’t understand how badly I need to do things my way and don’t see how much I struggle without accommodations. They are hard to get, especially in the workplace.

All I want is to do my best.

My autism is not my disability – unaccommodating people are.

Follow this journey on Anonymously Autistic.

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Thinkstock image by Archv.

 

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On Sunday night, the White House lit up blue in honor of World Autism Awareness Day, April 2.

“On World Autism Awareness Day, we highlight the importance of addressing the causes and improving the treatments for autism spectrum disorders (ASDs),” President Trump said in a statement. “We also recognize the importance of identifying ASDs early in a child’s life and of understanding the obstacles faced by people living on the autism spectrum.”

According to the Los Angeles Times, Sean Spicer, the White House’s press secretary, said Trump lit the White House blue as a promise to Suzanne Wright, the late wife of his friend Bob Wright, both of whom cofounded Autism Speaks.

Following Trump’s tweet about the White House’s color change, some tweeted the President applauding him for acknowledging autism.

Others were not impressed by the White House’s tribute.

Paul Ryan received a similar reaction after he tweeted a photo of himself wearing a blue puzzle piece pin.

Criticism of both Trump and Ryan comes following their support of the American Health Care Act (AHCA), which would have repealed the Affordable Care Act and limited Medicaid and services for people on the autism spectrum.

What’s your take? Let us know in the comments below.


Last night, my husband Andy and I finally got a chance to watch the widely acclaimed documentary film, “Life, Animated.”

For those who are unfamiliar with the film and best-selling book, “Life, Animated” follows the life of Owen Suskind, a young man on the autism spectrum, who, in his own words, uses his passion for Disney movies to help him make sense and find his place in the world.

I knew the essence of Owen’s story prior to viewing this documentary. He and his parents have appeared on various news programs and talk-show circuits over the past few years, sharing their remarkable journey.

Owen’s life is an inspiring tale, especially for families searching for their own key to unlocking the barriers which may exist for their child.

I had been looking forward to watching this film for quite some time now. I wanted to be inspired… to draw upon parallels between my own child, who similarly to Owen, has a deep and abiding love for Disney animated films. I wanted to feel as though if Owen could defy the odds, so can my Leo.

“Life, Animated” is an extraordinary piece of work. There were indeed moments of hope woven effortlessly throughout the film, simply by way of the Suskinds’ boundless dedication and love for one another.

Owen, the self-described protector of the sidekicks, can deliver every piece of Disney dialogue perfectly. He shows an optimistic view of the world around him.

Like Owen, Leo also experienced regression as a toddler. According to his parents, Owen was 3 when he began regressing and remained nonverbal until the age of 7, when a breakthrough occurred, thanks largely to animated films. In fact, Owen has used Disney films to help him cope with many of life’s challenges.

Watching “Life, Animated,’ I was inspired and filled with some of that hopeful optimism. But as one therapist in the film pointed out, the reality of life is not a Disney movie. And beyond the hopefulness embedded in the film, reality persists.

At the time of filming, Owen was 23, preparing to graduate school and embark on a new journey, moving away from his parents and into an assisted living apartment. While “Life, Animated” delivers an inspiring view of Owen’s incredible progression, we are also given glimpses into the challenges that still exist for him as an autistic adult and the fear and anxiety his parents feel as time continues to march on. They worry about what the future holds for their son.

Thinking about the future for your child or adult can be scary. Each day I stay consumed with the here and now. With helping Leo through his next school day, his next therapy appointment. One more skill mastered, another spoken word to add to the list… Progress clearly pieced together by the work of the past.

little boy smiling

It’s easier for me in so many ways to turn around and see how far Leo has come, rather than look forward 5, 10, 15 years and beyond. Thoughts of the future tend to bring forth uncertainty and fear…

Will Leo have the ability to communicate fully as time goes on? Will he be able to live independently? Will he be OK? Especially when I’m no longer here…

Owen deals with his own heart-wrenching epiphany during the film, and at one point, poignantly asks his mother, “Why is life so full of unfair pain and tragedy?”

“That’s just how life is Owen,” she responds. “You have joyful and happy times, but you also have times of sadness. That’s how life has always been…”

As the credits began to roll, I found myself gripping tightly onto the joy that Owen’s mother spoke of… trying with all my might to bury the fears that were bubbling over in that moment.

“Do you want to talk?” Andy gently asked.

“No,” I whispered, shaking my head, not yet wanting to face those feelings that the film had brought to the surface.

“It’s OK,” he responded. “We can talk about it tomorrow if you want.”

I nodded, while in the process of getting up to check on Leo.

The sweet sounds of his breathing filled the air as I approached. Placing my hand lightly on his little body, I swallowed back tears. I felt his chest peacefully rise and fall, rise and fall. It is impossible to be absolutely certain of what the future will hold for my boy.

But fearing it will not help him.

And what I do know is that just like life, he too will rise and fall…

He will struggle and face challenges, and he will fail.

But he will also persist and persevere.

I kissed his forehead, closed the door behind me and clutched onto the joy, the hope, and love that is ever-present in our lives…

He’s going to be OK.

Follow this journey on My Life With Leo.

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There are many people who dislike using labels for themselves and others. They may not want to feel like they’re being told to be or not be a certain way. They might dislike the idea of fitting neatly inside the given label. People like to feel free, not held down or confined to a certain way of doing things.

While brushing off labels can be liberating, it can potentially be harmful at times if a person views a diagnosis as a label. There are many conditions, that if left undiagnosed, can leave a person feeling isolated and confused.

As a young child on the autism spectrum, even before I was officially diagnosed, I knew I was different. I didn’t quite fit in with the kids in the special education classrooms, but I didn’t always fit in with kids in mainstream classrooms either. I wasn’t made aware of my diagnosis until right before I started high school, and it didn’t come as a surprise. In fact, it was a big relief! For a long period of time, I actually completely and totally believed that I wasn’t human. I thought I belonged to another species, and I just looked human. I had an extremely negative self view. I believed I was unintelligent and “bad.” I don’t know that being told about my diagnosis would’ve helped at such a young age, however, it was extremely beneficial when I got older.

I’m thankful my parents pursued a diagnosis, even when some professionals brushed off their concerns.

A word of advice from an autistic adult with a learning disability — if you are concerned about you or your child having a specific condition, please seek out a professional! I can’t imagine being successful when I hate myself, am frustrated and alone. An official diagnosis of a particular condition does not mean someone is less than. A diagnosis itself will not hold me back. The point of a diagnosis is to bring understanding and awareness. It is then up to the person and their family as to what they will do with it.

Understanding and loving oneself can be essential for success in adulthood. Knowledge and acceptance by the family members can make the world of difference for a child.

We want to hear your story. Become a Mighty contributor here.

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Autism acceptance means embracing us for who we are. It doesn’t mean looking for a “cure” or a way to fix us, but rather helping us navigate this world while capitalizing on our strengths. Everyone on earth wants to be accepted, and not to have the notion of having to be changed forced upon them. This is also true of autistics.

Imagine walking into a foreign land, where everyone is speaking a different language than you are, is dressed differently from you, and has a totally different form of body language than what you’re used to seeing. You don’t know what to do and start to become very anxious. All of a sudden, someone extends a handshake and says to you, “Welcome to our home. We know this is all unfamiliar to you, as your customs are to us, however we will do our best to try and understand your ways of life. All we ask is that you do the same for us. We can learn from each other!”

How wonderful it would be if this were always the case! All too often, the opposite occurs. People see someone who is different and perhaps feel intimidated. Perhaps they view the person as less than. Even worse, they feel compelled to try and make them conform to their ways. Wouldn’t you much rather have the above scenario take place? It’s all we can ask for as human beings.

The next time you run into someone who is autistic, or different from yourself in any way, for that matter, extend that handshake and a smile. You may be making more of an impact on their life than you may realize!

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by syntika


I couldn’t tell you how many times people have commented my daughter, Beans, has a “grumpy” disposition. I’ve lost track. It feels as if it happens daily, really. But the thing is, she isn’t grumpy – she’s almost 3 years old, she’s a toddler, and she’s also autistic.

If you knew she was autistic, you’d know she doesn’t get “shy” around strangers, she actually struggles socially.

If you knew she was autistic, you’d know it takes her a long time to warm up to people.

If you knew she was autistic, you’d realize trying to get her to give you eye contact or say hello is really distressing for her, and you’d back off.

If you knew she was autistic, you’d know it takes her about half an hour to decide on what item of clothing to wear every morning — despite having a wardrobe full of clothes. She only regularly wears about eight items.

If you knew she was autistic, you wouldn’t use the hand dryer right beside her in the public toilet and you wouldn’t mow when she was around.

If you knew she was autistic, you’d understand why she likes her food divided up sometimes.

If you knew she was autistic, you’d be compassionate and understanding when you see me carrying her everywhere — because her legs tire easily, and they hurt.

If you knew she was autistic, you’d know if the morning routine is deviated from in any large way without warning, she has a difficult time adjusting.

If you knew she was autistic, you’d know how much thunderstorms terrify her.

If you knew she was autistic, you’d know she completely falls apart when she’s itchy.

If you knew she was autistic, you’d know some shoes can take a long time to put on comfortably.

If you knew she was autistic, you’d see how at peace she was when she was playing in water.

If you knew she was autistic, you’d realize an iPad or an iPod can be a parenting tool — not a display of bad parenting.

If you knew she was autistic, you’d realize she’s an imitator and she’s processing her world through watching and copying others.

If you knew she was autistic, you’d see how lining up things and having collections is super calming for her — not funny or odd.

If you knew she was autistic, you’d know when she’s upset and I’m not cuddling her or touching her it’s because she doesn’t like to be cuddled or touched when she’s upset, it’s not because I’m a bad parent.

And if you knew she was autistic, you would know when she smiles it’s authentic; when she laughs it’s from the heart.

When you see her for who she is, hopefully you’ll realize she is not “grumpy.”

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