What You See and Don't See When You Look at a Child on the Autism Spectrum

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You don’t see the child who desperately wants to be compliant and “good” but struggles to keep it in all day, then explodes at home in her comfort zone with those she trusts the most.

You don’t see the anxiety that stays like a knot inside, as the world and other people can be unpredictable, which leads to an overwhelming need to be in control of the world and those around her.

You don’t see how that very same anxiety, when built up enough, leads to the inability to face going to school or participate in much-loved activities until the “knot” has melted away enough to move on with daily life.

You don’t see that the child who is refusing to speak or engage with anyone or maintain eye contact, who may seem rude, ignorant, or antisocial, could actually be in shutdown and struggling to deal with surroundings. He may be desperate to join in but unable to due to his sensory overload or anxiety.

You don’t see the absolute need to know what is coming next to avoid the unexpected and the worry that comes with it.

You don’t see the strict and complicated routines that accompany things as simple as getting in and out of the bath, going to bed, leaving the house and meeting dogs in the street. Every. Single. Time.

You don’t see the exhausting, continuous warnings and countdowns given numerous times through the day to get through to the next part of the day without meltdown.

You don’t see the child who finds it more comfortable to sleep on the floor or with no clothes on than in a comfy warm bed.

You don’t see the child who wears the same things every day for comfort yet has a wardrobe full of lovely clothes to choose from but who can’t throw out of any of those clothes as they mean too much.

You don’t see how the “fussy eater” is actually a child who finds certain textures and smells very difficult to manage… or the years spent trying to increase the “acceptable foods.” It’s not as simple as forcing that child to eat what is in front of him.

You don’t see the child who worries about and thinks about death excessively but keeps it to herself for fear of it coming true.

You don’t see the obsessive resistance to simple everyday demands, like being asked to eat food, start a new activity or get dressed, the inability to “just do” what has been asked, without causing a fuss or delaying as much as possible due to anxiety.

You don’t see the objects that absolutely have to be collected, carried, displayed and kept, to feel at ease and comforted by the familiar and calmed by the order. You don’t see the inability to throw anything away, no matter how insignificant it seems to you, even empty packets and what you may call “rubbish.”

You don’t see the all encompassing intensity of the interests and obsessions and the need to share it with anyone willing to listen.

You don’t see the confusion or distress as to why a person may have behaved or reacted in an unexpected way.

You don’t see the rigidity of thought and inability to stray far from that expectation or pattern without invoking panic or anger as a result.

You don’t see how the child having a “tantrum” is actually overwhelmed, or upset because something doesn’t make sense, has changed without warning, or is out of order. Sometimes the demands have just become too much to process. You don’t see that the parent trying to deal with it, doesn’t need your stares, comments or judgment to make her feel any worse than she already does. This is a meltdown, not a tantrum. It isn’t about getting her own way – though it can sometimes be about controlling her environment to alleviate the anxiety inside.

You don’t see the build up of fear, anxiety and helplessness as a meltdown is triggered, building like a wave, unable to be stopped. You don’t see it come crashing down catastrophically, unpredictably, sometimes lasting for hours. The need for space, calm, unending patience and understanding but displaying itself in kicks, punches, scratches and lashing out verbally, anything to end the feelings of confusion before it finally ebbs away.

You don’t see the self-hate, recrimination and regret that comes after that meltdown, the desperate wish to take back the words and actions that were totally beyond any rational control.

You don’t see the tears, the frustration, feeling “different,” “weird,” “abnormal,” and “inadequate,” when actually he is a kind, loving and unique and exceptionally clever in so many ways.

So what do you see?

You see a happy, confident and chatty child. You’re seeing the need to be accepted and liked and to fit in, a child who is clever enough to have learned the “social norms.”

You see a child who enjoys drama and pretending – who is good at taking direction and acting the part. You’re seeing the child who finds it easier to deal with scripted interactions and conversations.

You see a “normal” child who has her moments – like all children – but is generally well behaved. You’re seeing a child who saves his worst times for the safety of home and those who understand him and won’t judge.

You see a polite child who can converse well with adults. You’re seeing a child who finds interactions with adults less unpredictable and confusing than with peers.

You see a tiny snapshot of time where she can hold herself together long enough to pass as “neurotypical” – like you may be.

You see what you want to see. You see the mask.

A version of this post first appeared on Steph’s Two Girls.

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Thinkstock photo by Jupiter images

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To the Person Who Left Me Awestruck After I Told You About My Son’s Autism

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Last month was the second anniversary of my son’s diagnosis. At the time, I was tired and stressed, questioning my place at North Dakota State University (home of the Bisons) as a graduate student. I had a full-ride scholarship — but still, how was I to find a daycare to go to class and work? There were multiple times I was told my son could no longer access the daycares available, and that his needs were more than what the daycares we visited could meet. Finally, when the second one in a month told me to get my child medically evaluated, I was told, “Your son has autism and sensory processing disorder.”

I’ll admit that I didn’t quite know what those diagnoses meant in their entirety. I’ll admit the first time I ever Googled “autism” was after my son’s diagnosis. Those are not things I am proud of these days, but they’re the truth. I just didn’t understand. I wasn’t told in terms that made sense to me at the time. I was uneducated and felt so alone as a single parent. I felt like nobody I knew at that time quite knew what I was going through — at least not that I knew of…

The one thing I really struggled with on diagnosis day was the label: autism. I knew the diagnosis didn’t change who my son was on the inside, the compassionate boy I know and love. But I was afraid people would judge him over the label. Would people see my son for who he really is and not for the diagnosis he has? It was the fear of the unknown. It was the fear of people judging him before they really knew him.

The same day my son was diagnosed, we were referred to the ND Autism Center. They took him for a daycare observation day. I chose to go to work while they observed. As I sat at my desk that day, I dreaded talking to you. I dreaded having to tell you my student organization days were over, at least for that time. When I finally mustered up the courage to speak to you in our student organization office, I asked for your privacy. It was there that I finally broke down into tears. As strong as I tried to be through it all, I finally let myself be vulnerable in front of someone. You were the first person I felt comfortable enough to do that in front of. Through the tears, I confided in you the news of the day, the fears of judgment, as well as my fears for my son’s future. I told you I didn’t know if I would remain in school and if I could afford a specialized daycare program. I felt like home was where I was most needed. You sat and listened to me speak without interruption. You let me feel heard.

After all was said and done, you turned to me and said the most impactful words of my life. “You’re both going to be fine. You’re going to be able to do this and remain here in school where you belong. I know you’re scared of how people are going to view him, but they will see your son for who he really is. He will be able to accomplish anything he puts his mind to. The diagnosis just means that he will start getting the extra support that he needs. You want to know how I know all of this? It’s because I’m autistic too.”

I was awestruck. I had been friends with you for months and had never known this about you. You confirmed that despite my fear, we could overcome any challenge that comes our way. Autism isn’t something you can see — it’s different from child to child. You taught me that labels don’t define the child — they can also serve to help. You helped me see I needed to educate myself about ASD and sensory processing disorder (SPD) to fully understand what my child was experiencing and how to help him. You gave me the hope I needed to keep pushing forward.

Here we are two years later, and I am approaching my graduation soon. I will be the first Ph.D. in my family. My son started his first school sport, and he is doing very well. His coach says he just loves his enthusiasm and his eagerness to practice. He is successful in many ways. We both are.

You helped us get here. In all my years of university, the most valuable lesson I have been given was one learned outside of the classroom. It was learned in a small hallway by one of my peers.

I guess what I am trying to say here is thank you for teaching me my most valuable lesson so far as a parent. Thank you for telling me everything was going to be OK. I now know every word you said in that tiny hallway was a deeper truth than I could have ever imagined. Thank you for showing me the strength I had in myself. Thank you for showing me the true strength of the herd.

Sincerely, the fellow Bison,
Caitlin

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Image via Thinkstock Images

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KultureCity Creates Free lifeBOKS Program for Kids With Autism Who Wander

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A troubling phone call from a mother of a child with autism in Kentucky left Julian Maha faced with a significant challenge. Her daughter, the woman told Maha, had wandered outside of their home and nearly drowned. She was concerned because she had already bought items designed to keep her daughter safe. Now, she was reaching out to Maha, the founder of the autism nonprofit KultureCity, asking if he could come up with something better.

Maha and his team went to work, trying to devise a kit that would help families in need. They began testing devices within the autism community in Alabama, where KultureCity is headquartered. “Our big thing was we wanted to provide some sort of tracker,” Maha, whose son is also on the spectrum, told The Mighty. “We knew that a GPS device was the gold standard, but at the same time, from a cost factor, it was prohibitive to the families because a lot of them couldn’t afford the monthly rate.”

After months of research and experimentation, KultureCity began its lifeBOKS program, featuring four items designed to prevent children with autism from wandering off, also referred to as “eloping,” and drowning. To help as many families as possible, KultureCity provides all lifeBOKS for free. (There is a $5 shipping charge, which Maha said is waived for families in need.)

Photograph of SafetyTats in a LifeBOKS

Each box contains a Joey Tag bluetooth bracelet, a tracking device with short-range GPS and no monthly fees; wireless door and window alarms, shoe tags with QR codes, which would allow first responders to identify nonverbal children, and SafetyTats, skin stickers that act like temporary tattoos and allow parents a waterproof way of making sure their kids carry emergency contact information.

Now in its eighth month, KultureCity’s lifeBOKS program has provided boxes to approximately 1,200 families. “We’ve prevented 33 drownings so far,” Maha said. “We never want a child to drown on our watch.”

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When People in My Life Don't Believe I'm Autistic

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Telling people you are autistic can be hard. It can be even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like…

“Why are you complaining all of the sudden? You never used to talk about autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.”

These people are less than half-right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people, nobody believed me — so I stopped.

When I was in school, I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick. The doctors told my mother there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up, so I spent my life sick, experiencing pain and discomfort.

My mother told me I had to go to school or she would go to jail. Not wanting to lose my mother, I sucked it up and went. (Side note, remember people on the autism spectrum can take things literally. Be careful what you say to your children.) I experienced this pain and discomfort in silence for 30 years.

I’ve always been different, but my mother told me never to reveal your flaws — so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard eventually led me to an autistic burnout (autistic regression). Finally, as my sensory symptoms intensified, after years of confusion and being told “everything was in my head,” at the age of 30, I received a formal autism diagnosis.

Am I happy to have a disability? No, but I am happy that finally a doctor has an answer for me. After years of searching, I know the reasons for my pain and discomfort. I am happy I finally have the answers and information needed to take care of myself.

Is it wrong to want to feel empowered by information and truth? Should I have let this information crush me — would that be a more acceptable response to others?

They are also correct about my obsession with autism being recent.

I was Anonymously Autistic for 30 years and didn’t even know it.

I never spoke about autism before learning about autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero), I didn’t know what autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about autism.

Here is where people always get things wrong — I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger.

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain.” They don’t know about the secret headaches and physical pain caused by certain sensory experiences. If I try to tell them, they accuse me of complaining or exaggerating.

I’ve been acting like everything is OK for a long time now. It’s tiresome, but apparently I’m so good at “passing” that even some of my closest friends can’t see (and refuse to believe in) my autism.

It hurts that they think I am lying, but I try to remind myself they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Telling people you are autistic is hard for a multitude of reasons — people don’t believe you, people don’t know what autism is, people think autism can be “cured,” people think autism only affects children, the list goes on and on. I believe the worst thing about coming out is when you try to come out to someone close to you and they basically tell you, “No, you’re making this up. There is nothing wrong with you.”

When you don’t believe, it hurts so bad that I want to stop sharing, but I can’t because the world needs to know — for all the other Anonymously Autistic people in the world.

Follow this journey on Anonymously Autistic.

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Image via Thinkstock Images

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The Moment My Son With Down Syndrome Was Also Diagnosed With Autism

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You walk outside with the psychiatrist into the spring sunshine of the clinic play yard. With all the testing over, what remains now are only the words. You watch your little one pass by sand toys, slide and swings to sit on a sunny patch of concrete.

In typical fashion, he picks up a leaf and begins to shake it back and forth. Back and forth. You take a second to admire his sweet face and the blue eyes that you adore. You hear the doctor shuffle her papers and pivot toward you. You turn as well, keeping your face unruffled and your mouth relaxed. Breathe. You admire her — the ironed white coat, the nice makeup. She looks up from her notes and begins to speak.

But before her words arrive, you blink into the slanting morning sunlight for a split second, and it occurs to you: This is my last second of not knowing. Although, really, you almost do know. You just don’t want to hear her say it.

Definitely do not think of your husband, of your marriage, your other children, of your unfinished dissertation, of the avalanche that feels like it’s gathering right above you. Forget about parent-teacher conferences and kids’ volleyball games and what you were going to make for dinner tonight. It must all wait for now. Do not think about anything but getting through this moment.

Feel the sun.

She has begun: “Our testing process shows that your child has severe autism. His delays are not similar to those that most children with Down syndrome would normally experience.” As she enters the thicket of explanation, you look carefully at her hazel eyes, at her short beautiful haircut, now being fluffed by the San Diego morning breeze. Your eyes move to her medical name badge, and you wonder how this kind of thing is for her, for only the the two of you are present in this weighty moment that will change all the minutes and years that will come afterward. You look at her for what she truly is: the only other witness to the arrival of your changed life.

Her psychiatrist’s manner is steady, even soft. She delivers the news with a practiced, compassionate firmness that suggests many such past encounters. You attempt to follow the direction of her words, which are now traversing alien, mountainous terrain. She briefly describes the methodology of her testing, the results of the classroom observations and what the teachers’ assessments showed.

The voluminous pages of bubbled-in forms that you returned to her last month are acknowledged, as well as the results of his hearing tests. She begins to mention the details that you already know: his inability to imitate others or engage in imaginary play, his lack of a single verbal or signed word despite his five years, the fact that he needs no more than four hours of sleep at night.

She repeats back to you the reality that you sometimes find him, inexplicably, outside the house in the mornings, whimpering on the cold lawn. A perplexing night wanderer who can open doors yet can’t tell you why.

She talks about all of the things that he seems to not desire: friends, toys, compliments. That he has no apparent desire to show you a car he has unearthed from the depths of the sandbox or a dandelion plucked from the lawn.

Suddenly, you realize she is describing your life with him in such vivid, choking detail that you wish she would stop. Your chest tightens. She stops talking and looks at your face.

As you observe your child, who is still crouched in the play yard, shaking a leaf before his fathomless eyes, you realize that soon this moment of encounter with the white-clad psychiatrist will be over. She will be gone, and you will be left alone with the full weight of her words. Resist the temptation to cue the heroic narrative, no matter how much you might need it. And refuse to panic, yet. There will be time enough for both heroism and panic later. For now, stay focused on the matter at hand. Release your breath and feel the sun.

She is about to shake your hand and walk back to her office — and you to your car and your now changed life. Before you both do, ask her: What is the best advice she can give? Listen as she tells you that you’re going to need to establish a community of caregivers to help you, and that creating a new email account devotedly solely to his diagnosis might be helpful. Take the cards of the educational advocates that she offers. Make special note of the way in which she describes autism as a vehicle for getting him services that you now know he will not progress without. Hoard these snippets carefully, for although they do not comfort you, they are the best that she knows and here you will begin.

In the car, buckling his car seat, you realize this is ground zero, the beginning of the new, unwanted thing that — now known — might lead to help. All at once, you remember another morning, five years ago, when you were also in the car, when the phone rang and it was the genetic specialist on the line to tell you that the results of the amnio were in and your baby had Down syndrome.

You drive home. Get a Diet Coke. Lie on your bed. You cry while you watch him shake a spatula back and forth, back and forth, before his eyes while crouching in the corner of your room.

Don’t rush, but when you are ready, think back on the day of the amnio when you were pregnant with him. The day they took the sample they would use to test for Down syndrome. Recall the feeling that you had as they pushed the long needle through your skin and into your belly; how as you looked at his small silhouette on the ultrasound screen and all you could think was, “Hey, it is OK, I love you. I love you even if. I love you anyway.”

Realize, suddenly, that it is still true.

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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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"Aspergers Are Us" Documentary Is Available on iTunes and Coming to Netflix

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Comedians Jack Hanke, New Michael Ingemi, Ethan Finlan and Noah Britton have grown accustomed to performing in front of audiences, but the spotlight is about to get a lot larger for the members of the “Aspergers Are Us” comedy troupe.

“Aspergers Are Us” first made headlines in 2011 as the first comedy troupe comprised entirely of men on the autism spectrum. Now the troupe is the subject of a new documentary, also titled “Aspergers Are Us,” which was released on iTunes this week and will be available for streaming on Netflix in December.

“I had come across an article about [‘Aspergers Are Us’] and I loved everything about them,” director Alex Lehmann told The Mighty. “Their energy, their sense of humor, everything drew me in. Their troupe defied my preconceptions of autism, which meant I could make a movie where I was asking a question instead of presenting an answer.”

The documentary follows the four friends, who met at summer camp when they were younger, as they prepare for their final show together as “Aspergers Are Us.”

“[W]e hope people become interested in us as comedians and want to see us be funny on stage,” Britton said. “Much less importantly, we hope people stop tokenizing Aspies and see us as a legitimate comedy troupe.”

“I was really drawn in by the high level of integrity of the boys,” Mark Duplass, the film’s producer, said. “They truly want to be judged on their own merits. They don’t want any pity. I find them to be not only funny, but forthright and honest in a way that I don’t often see in the world today.”

Those interested in “Aspergers Are Us” can purchase the documentary on iTunes or Amazon

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