Close your eyes. Now, I want you to think about the word autism. What sort of image does it create in your mind? Do you see a little boy chasing other children, laughing? Do you see a little girl in pigtails dancing? Do you see a quiet, well-behaved child in a shopping cart with their mother at the mall? Do you picture an affectionate little girl, having a tea party with their dolls? Or, do you see a child rocking back and forth, flapping their hands? Beating their head off the wall or floor in a screaming meltdown? Do you see a child incapable of smiling, laughing or making eye contact? Do you see a child incapable of talking?
All of those images could be children with Autism Spectrum Disorder.
Perhaps one of the most common, and also most disliked comments parents of children on the spectrum hear is, “But he/she doesn’t look autistic!” Whatever the intention behind their words, the comment is one that is met with a myriad of emotions by ASD parents. The comment can spawn feelings such as anger, hurt and frustration, and also can make the parent feel isolated and alone, like no one understands. Some admitted to feeling like they felt that people thought they were making it all up. Too often, the parent keeps their feelings to themselves, instead of letting the other person know how the comment makes them feel.
Generally, I don’t think the comment is said with malice. In fact, I think often, the person is probably trying in their way to reassure us, or just doesn’t know what else to say. But, in the end, the comment generally comes from ignorance about what Autism “looks like.” Far too many people associate Autism with the publicly stereotyped behaviors such as hand flapping, rocking and head banging. They assume that people with autism are socially inept, cannot making eye contact or are incapable of having well-developed speech. But all of these are possible with children on the spectrum, to varying degrees.
Often, people seem to think that there are also physical markers, such as those common in Down Syndrome, or other chromosomal disorders. One woman remarked about being told her child was, “Too cute to be autistic.” It’s easy to see how a comment like this could be hurtful to a parent, with it’s implication that autism is supposed to make a child less attractive.
Autism is called Autism Spectrum Disorder for a reason – it is a spectrum. By the very definition of the word it has an incredibly wide range of symptoms, and those symptoms affect children in different ways. Children with ASD also have a wide range of abilities and disabilities. The new catch phrase for Autism, coined by many doctors and professionals is, “If you’ve met one autistic child, you’ve met one autistic child.” All children present differently.
For those children who are severely affected, it is easier to “see” their disorder. However, for those children who are on the mild(er) end of the spectrum, for someone who does not have daily contact with the child, unless you know their idiosyncrasies, it may be hard to see the “signs” of Autism. Also important to remember is that children with Autism often improve with therapy, and behaviors that were present at diagnosis, may no longer present a challenge.
And so today, I want to introduce you to several children with Autism. These children all come from different walks of life, they all look different, they all have different strengths and weaknesses. What they all have in common is that they all have varying levels of Autism Spectrum Disorder. Take some time to read their stories, and learn about the different ways that ASD can affect a child, bearing in mind that for each of these families, these are mere samples, not a full list of all their idiosyncrasies. See for yourself the huge variance in abilities and behaviors among life on the spectrum. Learn for yourself what the faces of Autism can look like.
This is my own daughter Ashley, she’s three and a half. She loves to dance, and loves Cinderella. She was diagnosed with Autism Spectrum Disorder just a few months shy of her third birthday. When she is with familiar people it can be almost impossible to tell she has autism – she is happy, bubbly, affectionate, makes eye contact, plays and loves to chatter – she “looks” normal. And yet her challenges are very real.
Ashley speaks well expressively, but has delays in areas of receptive language. She might act as though she’s ignoring your question, when in reality she’s just struggling to understand it, or her answer may not make any sense (be very off topic). She is also very literal, and many social pragmatics are lost on her. Saying, “Oh aren’t you cute?” or calling her a pet name like, “My little princess”, will promptly earn you the response, “I not cute, I Ashley.” On a good day, she will just calmly correct you, but if she’s having a bad day, this slip of the tongue can upset her, and she will scream at you.
She can get overwhelmed in new places or with unfamiliar people, especially males. When this happens, she pulls her “Retreat Maneuver” – her head goes down, she loses eye contact, will not speak, and she starts stimming with her fingers. Sometimes she’ll grind her teeth back and forth as well. This can also happen when she’s struggling to understand a question. Sometimes she gets over-stimulated in places like church, stores, even the library. When this happens she becomes hyperactive, and will run off on us if we’re not careful.
She is an empathetic little girl, but while she recognizes and can label other people’s emotions, she cannot label her own, or verbally express them. She has issues with rigidity and control. She can get fixated on things being a certain way and disruption to her physical surroundings can really upset her. We call her our “Just So” child. Her rigidity can lead to significant meltdowns. And while any three year old can throw a tantrum when they don’t get their way, there is a difference between a typical tantrum, and an autistic meltdown. She can go on up for up to an hour, can be very aggressive towards those around her, will throw anything within reach, will knock furniture down and will try to use evasion tactics such as trying to force herself to poop her pants.
She has several different sensory issues, including certain noises – loud music can either send her to the floor shaking and crying, or set her screaming. She is an oral seeker and will still put inappropriate things in her mouth, she also loves to eat odd things like spoonfuls of flour. While improving, she normally does not like close contact and doesn’t like to cuddle or be held close.
She has limited fear, because she struggles grasping the concept of danger. For example, despite having burned herself on it twice (thankfully minor both times), we have to constantly teach her why she can’t play near, or touch the wood stove. Complicating this is her high pain tolerance. It’s hard to teach the related concepts of fear of pain and the threat of danger, when you don’t feel that pain. She constantly is hitting her head on things – often times hard enough to cut herself, and yet will show no sign of pain. We often do not know she’s hurt herself until we see the blood ourselves.
While she is now quite a little social butterfly with peers, what most don’t realize is that this did not come naturally to her. That is perhaps one of the biggest misconceptions people have when they see a high(er)-functioning Autistic child. They see the child behaving “normally” and instantly assume that it means they were misdiagnosed, because in their mind, children with ASD are incapable of acting “normal”. However, this assumption is very wrong. Many children on the spectrum are perfectly capable of of acting “normal” – it’s just that those skills that come naturally to “normal” children, have to be taught to our children through intense therapy.
Anna’s autism has been different from the current stereotypes. She loves to cuddle, to hear loud noises, and to be with others. But her lack of speech and minimal imitation skills leave her uneasy in unfamiliar situations. Sometimes she cries or laughs hysterically and we don’t know why; these extreme emotions can change in a moment, and come without warning. The twirling of her hair, grinding her teeth, and sucking her thumb, are signs that she is experiencing stress or discomfort.
She is very sensitive towards others’ tones and moods, though she doesn’t always know how to handle those emotions, or how to express how she is feeling. Anna does not speak or sign, and so figuring out her needs and desires, or why she is feeling what she’s feeling, is nearly impossible. Despite these challenges, Anna is very fond of her immediate family members, and usually keeps an even temper (excepting those moments of extreme emotion).
She is a fun, silly, sweet little girl, and while we do give her therapies to help her be more independent and to prepare her for the future, we still would not change her for the world. Her autism has given us a new perspective on the world, on children with special needs, and on how all humans learn and grow. She has taught us so much about patience, understanding, and gratitude. We are blessed that she was given to us.
Yisrael has autism. He often wants to play with other kids in the park, but when he walks over flapping his hands and making noises, kids tell him to go away or be quiet. They don’t understand that Yisrael is trying to communicate with them in the way he knows how. Shopping with Yisrael is a nightmare. People see a child running away from his parents, grabbing items off shelves, or throwing a temper tantrum and are often quick to offer advice, thinking that they are dealing with a typical two-year-old, not an autistic 5-year-old.
Zak doesn’t “look” autistic. I don’t know what autistic looks like, but people have some sort of idea in their heads about what it looks like. There is an experienced special education teacher who specifically works with autistic children at our church who tells me on a regular basis that Zak isn’t autistic. She says he doesn’t have “that look” and I need to see a new doctor for an accurate diagnosis. This is just one example of many, including family, friends, church pastors and strangers we meet while we are out and about who just can’t believe he has autism.
He is verbal, although he has a pronounced stutter, and gives good eye contact. Most people are disappointingly ignorant of the spectrum of autism and how different it “looks” on each child affected by it. Zak’s autism is expressed in high anxiety, sensitivity to sensory input (light, sound, smells, taste, touch and movement), the inability to be flexible, spontaneous and compromising, and the need to control his environment, among other things. If any of this goes against his limits, he melts down.
His meltdowns include crying, screaming, making life threatening statements, throwing objects and other forms of aggression. They end with him curled up in the fetal position, shaking and shivering until he finally comes all the way out of it. And then he is joyous, exhilarated, over-the-top happy; an odd emotion coming from a very negative attitude most of the time.
We have safety plans in place in the event things get out of control and I need help managing him. It’s a scary life, especially with younger siblings in the mix. I don’t need people questioning his diagnosis. I have dedicated my life to research, doctors, therapy, medication and whatever else could help him grow to be an independent adult. I need the people in my life to be supportive, encouraging, uplifting and considerate to us. This isn’t easy. But God blesses us in our efforts.
Daniel is a high-functioning 7 year old Autistic boy. He appears to be an “average” child most of the time but if you spend enough time around him, you will notice little quirks or traits that are related to his Autism. Most people assume his quirks are as a result of being a spoiled child – being allowed to do things that other children do not do. They feel that a simple dose of strict discipline will correct the quirks or unwanted behavior. Nothing could be further from the truth.
Autistic brains are simply wired differently then the average brain and no amount of discipline will cure or correct the Autism out of him. Some traits that average children naturally poses, Daniel and other Autistic children need to be taught. Take for instance, common sense. The little angel versus devil on the shoulder that helps a person know when they are doing or about to do something wrong, Daniel does not have. This has to be taught to him in the form of rules. What an average child would know and understand, we have to teach and review on a daily basis.
We the parents have to act as that little voice, helping him to understand, not only what the rule is, but why we have it in place. For example, you have to look both ways before crossing the street because there may be cars coming, you could get hit by the car, and would get hurt. This is a rule that took us over a year of working on it, before Daniel started doing it on his own. Some days, we still need to remind him of this.
We have explained to Daniel that he has Autism and that he thinks differently then others, but that it isn’t a bad thing. No two people, no matter what is going on inside their heads, are ever exactly alike. Even twins that look alike, think differently. Autism just means that he’s special. This explanation allows Daniel to understand that he is different but not in a negative way.
Autism has certainly changed my outlook on life. There is always the saying, “Appreciate the simple things in life”, but before Daniel, I never really did. I do now. The drawings that he does, the times when he comes to us for random kisses and cuddles, the e-mails or text messages he sends from his iPad, and even just his daily achievements, mean so much. Every day I look at him, remembering the little preemie boy we were all so worried about, and am thankful that he is happy and healthy. Because, at the end of the day, that’s all we really wish for each one of our children, isn’t it?
Peyton, 22 months
My son Peyton is such a happy boy. He smiles and he loves to play with Go Go Smart Wheels just like any other 22 month old. What is hard for others to understand just by looking at his cute smiling face, is that there is an incredible mind that doesn’t work the same as other children. Yes, he looks like other kids, however he has sensory needs that can’t be seen or understood by the average person.
He likes all kinds of stimulation that looks appropriate now, at 22 months, but when he is doing the same things like spinning bowls at the age of five, it will look out of place. He likes to roll on the floor for relaxation, but when he’s in the middle of the mall rolling on the floor, people look at you like you are the worst mother in the world – “Why can’t she control her child?” Yet, all he is doing is trying to decrease the sounds, lights and other noises from overwhelming his system. Having a sensory disorder is like all your senses being at 100%, all at the same time. We have the ability to manage our senses with our brain but some kids with ASD can’t tune things out like we can.
I found that people treat my kids differently when there is something worn on the outside – like the weighted vest or braces on worn on feet . There is a visible sign that allows them to see that they are different. It’s hard when you feel that others are thinking that you should “control your child”, when they are only doing what comes naturally to them. I used to tell my mother that I should get t-shirts that says “I have Autism” to make going out in public easier. Yes they both look normal but their minds are different, and that is what is the most beautiful to me – because they think differently and uniquely, this can be a gift when they are molded with love.
Miranda is Peyton’s older sister. My daughter that is 17 now, used to have to wear earphones every day for years just to get through the days without screaming at everyone to stop whistling or tapping their pencil. The noises are painful to her. Miranda is affected so much by sound still today, that it is so hard for her to go into public.
She even has trouble at home with sounds. If she knows the dog is in the house she says she can hear her breathing. She has to go to her room a lot to escape the noise that bothers her. She has poor conversation skills and only communicates well with adults. She doesn’t have any close friends, so she plays the Nintendo DS and other game systems a lot. Miranda also has poor body awareness, so much so that she runs into a lot of things. Her gait is one of a rocking style.
People think she is older than she is and expect so much of her. Because at school they have no problems with her, they think she knows how to behave in every situation, but that is not true. At home she is easily agitated and yells a lot when anyone is making noise. She has many other sensory issues that interfere with daily life. She especially doesn’t want to be touched. Most people think if she is touched lightly that it won’t bother her, but it’s just the opposite. She gets highly agitated and responds inappropriately.
She wants to work in the library when she graduates high school because its quiet. She suffers with social skills and takes everything literally, so I know that will be hard for her. She is so sweet and good-hearted and relies on God as her strength, and that is how she makes it through the day. We send prayer cards with her to school so she can read them when she feels the need. I pray her social skills improve with age so she can live a fulfilled life where people can accept her for who she is and not by what they thinks she is because of her diagnosis.
Eli is our first child. He has been such a blessing in our lives. He is loving, affectionate, smart, funny and a joy to be with. He doesn’t look autistic… until he does. He will flap his arms, jump up and down and wring his hands when he’s excited or happy. Instead of calmly dealing with disappointment internally or rationally his first reaction may be to scream and cry.
He developed so close to normal development that he didn’t get diagnosed with ASD until this year. He’s been in speech therapy and has difficulty understanding language. He also has had a difficult time learning to read and write but since turning to homeschooling, he is really starting to catch up. School was a place where he had to deal with pressure to control his stimming and perform at a level that wasn’t possible for him – this caused an intense amount of anxiety for him.
My first recognition of Autism were of children more significantly affected. The child who seems to be hard of hearing, the child with constant stimming, the child with tantrums who could not bear to be touched. That wasn’t my son, and so for years I dismissed the possibility of his ASD. My son loves to cuddle, in fact he craves touch. He likes to find himself a small quiet spot to desensitize when he’s experiencing overload, like a cabinet, under a bench or under the slide at the playground. While some of his development was normal, like learning to walk and potty training, other development took time and therapy like learning to ride a bike, learning to swing, learning to write and even learning to sit at a desk for more than 5 minutes.
He’s in many ways a typical little boy – he loves paying with friends, he loves video games and Legos. He’s just unique, as the director of his preschool used to say, and quirky as his speech therapist puts it. We’ve seen lots of development in the past three years that makes us hopeful for his future. We have let Eli know about his super power and he is proud that he is part of a special group of people who experience the world differently.
When we were going in for diagnosis a friend of mine said, “Oh you are so lucky to have a child that others can’t see his disability, they won’t judge him before they meet him.” While her statement might be true, it saddens me to know he will still be judged by people who don’t understand how to accept unique and quirky as positive pieces of the puzzle of life and relationships. I’d love to spare him that criticism in life, but instead I will teach him to be confident in who he is, to love with abandon and never stop being who he was created to be. Autism is a neurological disorder, it happens in the brain and can affect the entire body in different ways. I’d love to see people stop responding to this diagnosis as a pitiful fate for children. Different doesn’t mean less – in our case different means blessed.
**If you would like to share your child’s story on this blog, please contact firstname.lastname@example.org