Home > In Their Own Words > In Their Own Words –That Shiver of Recognition

In Their Own Words –That Shiver of Recognition

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011.

First, I note the impatience in the father’s voice as he cautions his son to slow the grocery cart down in the dog food aisle. The maybe seven-year-old looks just like his dad in a tee-shirt and shorts, but he moves with an awkward, unfocused gait.

“Nolan!” the dad shouts. “Stop right there and look at me. Look at dad. Nolan!” Too late – bang! Staring down at his flip-flops, Nolan has bumped his empty cart into mine. No damage done, but I pick up on the faraway look in the child’s eyes and the sound of fatigue in his dad’s pleading, “Nolan! Look at dad, Nolan!”

“No worries,” I say to the father, winking at Nolan and giving them both a big, goofy smile. Nolan doesn’t smile back at me, but I can see he’s paying attention now, and as I push on down the aisle I feel a shiver of recognition. I know that look on Nolan’s face and I get the helplessness in the father’s voice.

I remember other trips to the grocery store that went awry. I remember the condescending looks from others, when I would repeat myself endlessly to get my own child to move away from wherever he had gotten himself stuck. I want to tell Nolan’s dad that it’s okay for his kid to tap the cart into mine, because I could see his boy had been enjoying hearing his flip-flops slide across the cool, clean floor. I want to tell Nolan’s dad that he’s doing a good job today, taking his son on an errand, just the two of them; maybe giving mom a rare break.

But I say nothing. Even though my autism radar has kicked in full force, it would have been presumptious of me to make a quick diagnosis of Nolan’s abilities. I don’t dare tell Nolan’s dad that, “I’ve got a grown-up Nolan at home and believe me, you’re doing a good job, dad.” Instead I bite my tongue and zip around the corner to the lightbulb display.

Still, I wanted badly to pat Dear Old Dad on the back, offer a little solidarity on the autism battlefront, and let him know his hard work will pay off down the road. But I do not cross that privacy line.

And this is how autism works to isolate us further as parents. With the spectrum being so broad, it often manifests itself as a hidden disability which creates its own sort of secret society for the families who are in it for life. The bright side is the hidden gift of an ever-growing organization like Autism Speaks, a place where the right to being a different sort of human is recognized, valued, and honored.

Meanwhile back in the lightbulb section, I find the familiar in an unexpected place once again. Here comes Nolan, bearing down on me with his grocery cart a second time, only this time he’s staring at me with a big smile on his face. His dad follows close behind him with his palms turned up. Then he recognizes me and laughs.

“Look out, dad,” I let myself say, “the fun is just beginning.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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  1. Dyezah
    July 16, 2010 at 12:10 pm

    You looked into my heart for this one. I’ve been on the both sides as a friend to a mom of three Autistic boys to having my own with Aspberger’s. People are scared of people & things they don’t understand. I pray for them as I calm my son & we leave the scene of our last try.

  2. July 16, 2010 at 12:12 pm

    This one really got me. Thanks for making me cry. ;) The fact that the child actually could go to the grocery store and enjoy himself was touching. My son would hide in the cart…away from people. What do you say when you know, but don’t want to offend? I think your comment was perfect.

  3. JODIE
    July 16, 2010 at 12:47 pm

    This story was so touvching. HOw many times have I tried to ake my s out on a errand to enjoy everyday life activities to them turning into me and him both crying while i am desperately trying to get him into the car. Too often did i ju8st get stares and here so many “wows” and “OMYGOSH”. Not once did anybody come up and say to me i understand what your going through and it will get better. I say yes tell that parent what you think, it might be the only rcognition their getting other then the ones they recieve from theirt child when they occasionally com out of their world of autism into our own so called “normal” life.

    • ashley
      July 16, 2010 at 1:20 pm

      aman

  4. Sara
    July 16, 2010 at 12:47 pm

    This is such a true and touching story! When my husband and I are out with our 4 year old son with Autism I too feel like sometimes it’s this secret society. I love those moments where we run into another Autism family and there are those exchange of knowing looks we give one another… some times a conversation is started and some times not. But whether or not there is conversation it still gets me excited and reminds me my husband and I aren’t alone in our struggles and our amazing life!

  5. Michael Burke
    July 16, 2010 at 12:49 pm

    When I find myself in that spot, I agree that I dare not make that diagnosis either. I just look the parent in the eye and say, “I understand” or “I get it.” Something that might relay to the parent of another autistic child that I understand his/her situation, but a parent of a neuro-typical might think I was empathizing with the challenges of raising any child.

  6. Martha Lange
    July 16, 2010 at 12:53 pm

    I can totally understand as I have been in both shoes. Going to the store with Max is a mission because he wants to run around everywhere, ask questions about everything. What hurts me the most is when people make mean comments about him and how he acts. Many a times I have turned around an let the person know what he has and how it makes him act. I have also told them that I am trying to make him as normal to the normal standard of this world, but it is a hard job. I let them know that he can’t help it, it is like a blind person they can’t help being blind. It’s not like I asked for my son to be like this. It was in God’s plans and we choose to deal with it. Making his life better, he is part of our family just like my other kids. There have been times when we have gone out with the family and have had to leave, because you see, his sister don’t take it lightly when someone talks bad about their brother, I have had to stop many arguments and prevent many fights. To his sisters and brothers he is just Max, this wonderful lovable boy who has the energy to move the world. I just wish people would ask why he acts that way instead of just making comments. If they only knew how many children have Autism they would understand. I just feel sorry for all those that are adults now, 20-30 years ago when they were just thought of troubled kids, what most people don’t know that those troubled kids more than likely had Autism. So please next time that you are out somewhere and run across a child like this, ask yourself if this were my child would I like it, if I heard a rude comment about him.

  7. Tanya Dunton
    July 16, 2010 at 1:16 pm

    Wow, another moment where I find myself weeping. Celebrating the joys my son gives us and grieving for the “dad’s” frustration. The other night we celebrated my mother in law’s birthday at a local restaraunt. (We were holding our breath…) My son was upset, we still do not know why and he did not look at the waitress when he ordered. A muffled “chicken tenders” was all she heard. Dessert is not common for us, but we felt a treat was in order. He was playing with a truck, looked the waitress in the eye and said “may I please have a dirt bucket?” (choc. icecream with gummy worms, cookies). She smartly replied, “well, when it comes to dessert, you can speak for yourself, huh?” I was not prepared to educate or guide her, so I shrugged as my face turned red. We are pretty quite about his Asperger’s in public, I choose my battles and wonder, always if it was the best choice.

    • Sheila
      July 16, 2010 at 3:01 pm

      Tanya, I myself had almost this same situation with my daughter, running through my mind is the same thing do I explain her situation? does the waitress even care? do I waste my time and hers? usually I just leave well enough alone and considerate it a life lesson for my daughter and use the situation to educate her instead, I guess we cant educate everyone else everyday. Call me greedy but sometime I just dont want to share the amazing gift of Aspergers with everyone else. But I do agree with you choose your battles and go with your heart, your really the winner anyway. :)

  8. Laura
    July 16, 2010 at 1:27 pm

    I have more patience with other kids because of my son with Autism. Though he is different, he deserves to be out and about. Whether it be the grocery store, or the playground, it is always a learning experience.

  9. charlotte Abanes
    July 16, 2010 at 1:38 pm

    So nice to see it through your eyes. My son has Aspergers and is now 18. I remember a time in church. He always carried his bible in a case with a handle on it and would always be swinging it one day he hit someones coffee cup and they lashed out at him not knowing him. He said he was sorry so we went out and bought him a bible with out a case or handle on it. He started the habit of saying he is sorry for the little things and we told him sometimes the little mistakes don’t matter. As a parent I remember all the times I keep repeating to him until he got it. He has grown into a fine young man. God gave him a wonderful gift he has a voice of an angel. He has been with a youth group doing plays. This year he is doing a production with an adult production group Jesus Chris Superstar. Someone he went to school with that graduated last year came up to me last night and said I did not think he would in this theater group like he was not good enough my first thought was to lash out. But then I thought about it and he is now 18 very sure if himself musically and these type of people don’t bother him. They have the problem not him. He is going to community college majoring in music and recieved a music scholarship for the next fall / spring and has made the chamber choir. He is too busy in his life to worry about the negetives.He has taught my husband and I alot.

  10. Chris Gillespie
    July 16, 2010 at 1:39 pm

    i have made a point to ALWAYS state (almost proudly in some odd sort of way) that my son has autism. not in any kind of way that says “my son has autism TOO!!!” that might annoy those without a diagnosis, or who dont have it… but to open a door. the amount of times i end up in a 10 min conversation in costco or whatever either in solidarity or answering questions is kind of scary. i do everything i can to reduce the isolation. my 4 year old was lucky enough to have resources like Stanford medical and Lucille Packard Childrens hospital available when we suspected it was time to seek a diagnosis. (1.5 years) and got help for him early. i have a cousin who was not diagnosed until he was 40! (his mom after talking to me got him in to be evaluated) we are isolated only if we let it happen! when my father was put on oxygen at the age of 63, he had two choices, sit at home and be embarrassed about it, or put on the hose, go out, deal with the stares, answer the questions, and continue to live life to the fullest. and he got 6 more good years! he is our inspiration when we go wine tasting and choose to bring a 4 year old with autism and his twin sister along! that can be REAL fun! but they love it.

  11. Rachel
    July 16, 2010 at 1:42 pm

    In my mind, the loving smile says way more than any words. It’s like when someone has lost a loved one…people try to say all the right things but they don’t know that much of it comes across as presumptuous, condescending, or worse. To me, a kind smile is the universal langugage of love that always gets the message across.

  12. wtgm3
    July 16, 2010 at 2:56 pm

    Awww, you gave me tears. Love everyone’s post, too. Yes, people that do not understand will look condescendingly, but I am getting to the place that I don’t care. I won’t be rude, of course, and there will be times when we speak up and say to someone what he is dealing with. I am actually amazed that I find many an understanding or knowledgable person. I am grateful that we have 2 teachers living in the neighborhood, who were able to tell that my son is “different,” but they are so nice to him. One of them even brings him candy and chocolates every so often when she walks her dog, :-). And all he did, I’m sure, was say, “Hi!” when he saw her on the street. I think that is what wins a lot of people over. Thanks for the encouraging post.

  13. Shannon
    July 16, 2010 at 3:09 pm

    I am thankful everyday for all of the kind people that made my experience having a child with autism easier. When my son was a baby he would never snuggle. He was my first, so I did not know it was not typical. He would be stiff as a board while I held him. One day a bank teller noticed this, and without any introduction asked me if he had autism. Well!! I never!! I promised never to go to that bank again. My son was diagnosed at the age of 6. I really was clueless! I have since learned patience for anyone who wishes to reach out. There are so many of us out there! WE need to stick together.

  14. Denise
    July 16, 2010 at 3:24 pm

    I often make it a point to speak encouraging words to any parent that seems tired or stressed when out with their kids. I merely say something like “I’ve got kids and know how tough it can be when they are tired/over-stimulated/excited. I’ve been there.” Sometimes a sympathetic voice can soothe when the parent feels that everyone is being critical.

  15. Pat
    July 16, 2010 at 3:48 pm

    I had an experience similar to this. I was at the zoo, waiting in line to buy a drink. Behind me a mother, her son and the boy’s Grandmother. The boy was acting up, I could see the signs of Autism immediately. The mother apologized to me. I said,”Oh, that’s alright, I have a granddaughter with Autism, and sometimes she is uncomfortable in public and acts up.” The mother quickly replied “My son has Autism!” She was so excited and relieved to talk to someone else that understood her situation she began to cry. Her mother simply said “Thank you for talking to us, most people just give us dirty looks when he acts up in public.” I was so glad that I said something. People so often feel alone and desperate, sometimes it’s good to know there are others out there that understand. A smile, a kind word really do make a difference! Thanks to everyone out there that take the time to show kindness and understanding!

  16. July 16, 2010 at 10:34 pm

    I’ve been on both sides of this equation many times. If I notice somebody in the playground with a kid obviously on the spectrum, I usually just open the door by (quietly–not in front of my son) telling the parent that my child is on the spectrum and has ADHD and we have a hard time playing in crowded playgrounds too. If the parent opens up after that, then great–if the child isn’t on the spectrum, then no harm done.

    I try to be nonchalant about my son’s condition, because IMO everybody has something to deal with in life. If the parent I’m talking to also has a child who is ASD, then they appreciate the contact. If they don’t, they learn something.

    People don’t understand ASD–they think all spectrum kids are like “Rain Man”, and always seem to be surprised when my Aspie-like son is so verbal and charming. They don’t get the whole concept of the “spectrum” and so a verbal child who looks “normal” is thought of as a bad kid when he’s really just having a reaction to sensory overload. I don’t understand ASD, and I’ve been dealing with it for the past 2.5 yrs.

    We have to show ourselves in order for people to be more sensitive to our situations. If we hide in the corners, then how will autism ever be normalized?

  17. July 17, 2010 at 12:00 pm

    I have gotten many glares and exclamations from strangers when I’m out in public with my granddaughter. I try to keep my focus on her, calming, guiding and comforting her through these overwhelming situations and that helps keep the reactions of others in the background for me. Still there have been times when I was exhausted and having a hard time coping and a kind smile from a complete stranger has really done a lot to boost my spirits.

  18. John
    July 22, 2010 at 5:38 pm

    I had a similar situation a while back. I was traveling with my 3 year old ASD son and we were getting ready to board a long flight. My son had just recently been diagnosed. I was still in shock a bit. I haden’t developed any of the “defense” skills that an ASD parent developes over time. I asked the gate agent if we could pre-board. The agent said “no way…I don’t care if he’s autistic”. She was SO rude. My son is fine once he reaches his seat but the long wait in line to board and being surrounded by a crowd of people is very difficult for him. It took us over 15 minutes to board and get to our seat. My son went nuts. He screamed and cried the entire time. People were staring at us and making rude comments. It was horrible. Just before I reached our seats I was down on one knee quietly singing a song to my son. Sometimes that calms him down a bit. I looked up and this elderly lady sitting next to the isle was smiling at me. She put her hand on my shoulder and said “you are a wonderful father and you have a beatiful son”. At that moment it was the nicest thing anyone ever said to me. She knew. I was so thankful that she was there and that she said what she said. That was 2 years ago. I have of course learned how to handle ignorant people now. I would never allow an airline employee get away with treating my son that way today. 2 years ago I didn’t have a clue. I also have learned to spot kids on the spectrum and realize they are everywhere. I give out a lot of smiles to parents and I get a lot of relieved smiles back. I’ll never forget the kindness that woman showed me that day.

  19. Bryan
    July 24, 2010 at 9:48 am

    Dear Ms. Finlad,
    I loved the part in your story where the father recognized you. The truth is, your kindness probably gave you away to him without having to use any diagnosis of his son, and he already had that sense that you understood. At any rate, he knew that you were one less person who would stare, comment negatively, or be rude by your second encounter. He knew. And it probably helped him to stay in the store instead of giving up. I’ve been there with a son who exploded a 2 liter soda bottle on a shopping trip, and also tried to use a toilet display at ground level in a home improvement center. Really.

    So, Thank you. For the father in your story, and from me.

  20. Bryan
    July 24, 2010 at 9:52 am

    Dear Ms. Finlad,
    I loved the part in your story where the father recognized you. The truth is, your kindness probably gave you away to him without having to use any diagnosis of his son, and he already had that sense that you understood. At any rate, he realized that you were one less person who would stare, comment negatively, or be rude by your second encounter. And it probably helped him to stay in the store instead of giving up. I’ve been there with a son who exploded a 2 liter soda bottle on a shopping trip, and also tried to use a toilet display at ground level in a home improvement center. Really.

    So, Thank you. For the father in your story, and from me.

  21. Bryan
    July 24, 2010 at 9:54 am

    Dear Ms. Finlad,
    I loved the part in your story where the father recognized you. The truth is, your kindness probably gave you away to him without having to diagnose or discuss his son, and he already had that sense that you understood. At any rate, he realized that you were one less person who would stare, comment negatively, or be rude by your second encounter. And it probably helped him to stay in the store instead of giving up. I’ve been there with a son who exploded a 2 liter soda bottle on a shopping trip, and also tried to use a toilet display at ground level in a home improvement center. Really.

    So, Thank you. For the father in your story, and from me.

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