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I love the magic that happens at bedtime. The closeness and relaxed little body against mine. The slow down as we choose a book to read together which starts as her “reading” the book to me and then handing it to me with an expectant, “your turn!” We read the pages and stop to look at some of the pictures longer than others. Then I ask her what song she wants me to sing first and it’s the same one every night… “joy-joy, please!” Once I didn’t ask and I just started singing and rocking… I quickly learned she likes to be asked regardless of whether or not I know the right answer. When we finish singing three or four songs  I lay her in her bed and the best part of my day begins.

No, it’s not running downstairs to finally get some “me time.” It’s not rushing off to my secret stash of sweets or collapsing on the couch with the remote. It’s what I used to think were her stall tactics, but now see is really her little heart opening up to mine as she lays in bed replaying the day in her mind. As I lean over her for one more kiss goodnight she starts to open up, and I have learned to stop and listen.

She tells me about all the things she did that day. I hear stories from school and I learn what stood out to her as special at home. She asks me questions and tells me what she wants to do the next day. I hear her say things like, “maybe we’ll go to a basketball game?” and, “will you paint my toesies in the morning?” and last night it was, “I want to see Pap, Grandpa, and Uncle Billy please.

This beautiful thing happens at the end of the day by her bedside – I learn what is important to my daughter. As she shares her memories and things she misses or looks forward to, I get a glimpse of her heart. We get uninterrupted time to connect as the room is quiet and still and dark. She isn’t competing for my attention with anything or anyone else. It’s just me and her together and she blossoms. I have learned to be still and quiet and only talk if she asks me a question or to let her know I’m listening. I don’t guide her words or try to teach her things as I sometimes do during the day. This time for us is my turn to sit and learn from her.

But I almost missed out on it. In my exhaustion and to-do lists I cut her off. When she first started to talk to me at bed time I listened for a moment and then told her that it was time for bed and we’d talk in the morning. But when morning came she had either forgotten what she was going to share with me, or she simply didn’t want to anymore. I felt a twinge of disappointment and then went on with the day. After a few mornings like this I decided to let her talk to me that night and the result was beautiful connection.

I’ve learned that there is nothing on my to-do list as important as hearing my daughter. No matter how tired I am, I know I’ll regret not staying next to her and listening to her thoughts. We’re building a foundation of trust each evening as learns that she matters and I will listen to her. And I can only hope that she will want to talk to me at bedtime when she is six, ten, fourteen, and eighteen. I hope when our evenings are quiet and there are no little ones to tuck in at night that my phone will occasionally ring around 8pm, and she’ll want to talk to me then too. 

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“He doesn’t look like he has autism.” 

“But he seems so normal.” 

“Oh my kid does that too.” 

Trying to advocate for my son, while also attempting to raise autism awareness can be a tricky business because my personal experience with autism is limited to one person… Mareto. Yes, I know other children with autism (which wasn’t the case a few years ago) but I don’t know them or have experience with them like I do with my son. So, when I share about autism and parenting a child with autism it is from the perspective of Mareto’s mommy. And sharing can be frustrating because often I get responses like the comments above.

What do you say to someone who doesn’t think your child looks autistic? Does autism have a look? Yes, I suppose it does. It looks like beautiful brown eyes that sparkle in the light. It looks like a wide smile and a face that lights up with joy over the sight of a train. It also can look frightened and confused and bothered by loud noises. Autism can look like blue eyes or green eyes, blond hair or black hair or brown hair or red hair. Autism can look like eyes that never quite meet your gaze or eyes that have learned to make contact except when overwhelmed or frightened. Autism can look like diapers at five or potty trained by three. Autism can look like flapping and spinning or sitting quietly with an iPad. Have you caught on yet? There is no one look to autism. 

Did my son seem “normal” to you in the ten minutes you spent with him? Well, that’s nice because he is normal… he’s a sweet, normal, beautiful boy with autism. If you’re trying to tell me that you didn’t notice any signs of autism in your limited experience with him that’s okay too. But please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours. But if what you’re really trying to tell me is that you don’t think he has autism then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles, and all our triumphs. What you are really implying is that we’ve wasted all our time for the last 2 1/2 years because he’s just “normal.”

Or what about the little girl down the street? The one who doesn’t look like or act like my Mareto. Her parents are concerned and have been referred to a specialist to evaluate her for ASD (Autism Spectrum Disorder.) But she couldn’t have autism because she’s so very different from my son. She doesn’t share the same struggles or act the same way. She eats just fine and maybe she’s even potty trained. But she has her own list of “quirks” and maybe it’s something… but surely not autism. In comparing her to Mareto we make a common mistake. We forget that autism is a spectrum - a wide spectrum of incredible people with varying gifts, interests, looks, and struggles.

There is no one look to autism and there is no one face of autism. My friend’s son loves fruit, but my son is repelled by it. They both have autism. Her son is a blue eyed, blond haired little boy and mine is a brown eyed, brown skinned little boy. They both have autism. Sometimes my son makes eye contact and other days he really struggles to meet my gaze. He still has autism in each moment. Sometimes my son will play enthusiastically with other children and other days he hides in the pantry to escape all the noise and interaction. He still has autism in each scenario.

My son is not the face of autism… but he is one of the many beautiful faces of autism. 

  • Crystal - I’d like to start off by saying I love reading your blog! You have a beautiful family and an amazing story. My comment on this post is from the perspective of a special education teacher and a friend of several couples with autism or and/or special needs. I struggle almost daily with how to respond to questions that are presented to me; “Is this behavior normal?”, “Do other children in the class do this?”, “When will he/she be potty trained or read?”. However, the worst questions of all are “Does your child do/act like this?, “Has your child met these milestones?” As a teacher I know that the parents are worried and unsure of their child’s future. I am most confident in referring back to the IEPS and reassuring the parents with the progress their child has made thus far. As a parent or friend I am a lot less confident. Like you mentioned, I do not spend as much time with their children. I may be a special education teacher but I don’t have all of the answers. As a teacher I want to suggest possible interventions but as a parent /friend I don’t want to offend anyone. As a parent, I want to sing my child’s praises but I worry about hurting someone’s feelings by comparison. I often find myself downplaying my daughters abilities for this reason. I love spending time with these people but cringe when the subject of our children come up because I’m afraid of saying the wrong thing. I’m sure that the people that you mentioned had good intentions and just don’t know what to say. Thanks for sharing your stories and pictures!ReplyCancel

  • Tamara gilbert - What a beautiful description of autism. Thank you for helping us understand, not just for you but for everyone with autism.ReplyCancel

  • Heidi - One of the therapists we saw early in our journey with autism told us that if we put 100 kids with autism in a room, not two of them would look the same or have the same expressions of their autism. This has become my mantra for handling comments like these!ReplyCancel

  • Kristina - Your amazing. I felt like you were speaking for me. I hear this all the time and get so frustrated that instead of getting praise for 30+ hours a week of early intervention and countless hours of HARD work day in and day out, finally seeing amazing progress, we hear but he is so “normal” or I think he was misdiagnosed. A huge thank you for this blog and for being an awesome autism mom and advocate!!!ReplyCancel

  • Meg - It is really important to be reminded that autism is a spectrum, and there is such a wide variety in that spectrum. I find this wonderful and beautiful as a parent–because it is a reminder that each child is unique (as cliche as that can sound, it’s truly awesome!) but as a medical practitioner, I have a hard time with spectrums. If I have a patient that comes in with flu symptoms, for example,and they also have ASD, how am I supposed to approach this patient and family? With sensitivity of course and a listening ear. But it takes TIME to get to know a child (or individual) with ASD. I know that in the clinical setting we can’t have a one size fits all approach to caring for patients who have ASD. Any advice for a nurse, Lauren? I generally try to “treat others how I would like to be treated”, but what more should I be doing?ReplyCancel

  • Jill - I really love this post and perspective. What a beautiful boy you have!ReplyCancel

  • Julia Hope - I have a 30 yr old son on the spectrum, not diagnosed until he was 22. He saw his 1st specialist at 10 months, was told he was mildly retarded age 2, and was in special ed based on communication deficits throughout schooling. I began suspecting autism about 5 years before diagnosis.

    My problem is his 32 yr old sister. She is an accredited k-8 teacher with a Masters in Education. She taught jr. high for 3 years. She now works with elementary age kids in theater. She had one student, never diagnosed, with “traditional” autistic behaviors. Because her brother doesn’t have some of those behaviors, symptoms, or traits, she doesn’t believe he has autism. I took him to an autism specialist after I had initiated a divorce she vehemently opposed. All I did for the next 3 years were suspect in her eyes, suspicion encouraged by her dad with an addiction they both deny.

    Eight years after the diagnosis, she still refuses to believe. Your article, “To the Person Who Said My Son Doesn’t Look Like He Has Autism”, tearfully reminded me of her. I’ve saved it, and hope to forward it to her. With your help, she and I might be able to take another step forward.

    Thank you.

    Julia H.ReplyCancel