Menu
Special Needs Parenting

Life with an Autistic Non-verbal Child

Life with an autistic, mostly non-verbal child is extremely rough. If you or anyone you know is going through life with an autistic child, here is a summary to help you understand what their life might be like. Remember that all autistic children are different so this is just one example.

Eating

Luke wakes up between 6.30-7.30am. He immediately wants to eat breakfast or bounce on the trampoline. If he slept well the night before, then he is usually quite happy. About once every two weeks, he wakes up in the middle of the night and takes hours to get back to sleep. On those days, he is tired and angry.

Most mornings, he wants toast or crackers or cereal. He actually doesn’t eat much more than toast, crackers, and cereal. We have been going to a food therapist to try and get him to eat other things. It is extremely hard to get him to try new foods.

His current diet consists of:

  • Toast – with butter and honey on it. He doesn’t want to eat the crusts though.
  • Peanut butter and honey sandwiches – these get really messy though. Lately it seems like he only wants to eat the honey off of it.
  • Apples
  • Pasta – only with pesto sauce on it.
  • Pizza – he usually wants just the Little Ceasars brand
  • Waffle Fries from Chic Fil A
  • Pancakes and French Toast
  • Smoothies
  • Crackers, Chips, certain types of Granola Bars

When special needs children only eat a very limited amount of food, they can easily get tired of this same food and then not want to eat it anymore. But they don’t want to try anything new either. This is called a food jag. To avoid food jags, therapists have told me to try and modify the food that he does eat ever so slightly. Make it a “just noticeable difference” in color, taste, presentation, etc. I try to do this, but sometimes it is so hard!!

For example, Luke used to like apples. He would eat them whole. I tried to buy different types of apples, but overtime, he stopped eating apples all together. Ugh.

Variety

I am constantly trying to buy different foods and brands so that he doesn’t get stuck on one type of food. But honestly, it is frustrating and sometimes I just want to scream!

Lately I have been trying to help him work up to eating new foods. This is the food diagram that my therapist gave me. Right now, I try to help Luke touch the food to his lips or take a tiny bite of new foods. My therapist recommends not to reward that effort with desired food, but other therapists think that is just fine so do whatever works for you!

Restaurants and Going Places

Luke’s limited diet makes it hard to go places. We usually have to bring some special food just for him. Or we keep going to the same places that we know he will eat from. We could just go wherever we want and starve him until he tries some new food, but autistic kids can be VERY stubborn. My therapist says that he has had children hospitalized because their parents won’t give them their preferred foods and the child refuses to eat anything else. I haven’t tried giving only new foods to Luke for a week to see if he would break down and try something new. But I won’t say I haven’t contemplated this plan several times.

Restaurants can be hard with Luke though because he has a hard time staying still. Recently we went to a lodge up in the mountains. There were only two families in the room; all the other tables were empty. We were with Ian’s extended family. I tried to get Luke to eat, but he kept wandering around the room for a few minutes at a time and then he would come back to us and check in. Right when we got our food and were about to dig in, the waiter/chef came up to us and said “Hey we can’t have him putting his hands in his pants and touching all the tables.”

Ian and I both felt so embarrassed and sad. Ian took him outside while I ate, and then we brought home the food for Ian to eat later. It was just another reminder that we couldn’t quite live a normal life with Luke. We couldn’t enjoy normal things like going to a restaurant with his family. At least not yet. Obviously we will keep trying to teach Luke to fit in.

Communicating

Luke can’t really communicate very well. He will say about 10 different sounds/words. But mostly he likes to grab you by the hand and try to push you where he wants you to go. When we meet new people, they often ask him “Hi what’s your name?” He has never answered that question. I always have to answer it. Sometimes that gets hard. I actually don’t really like meeting new people anymore because there is so much to explain.

I think it would be easier if he had some sort of physical sign showing he was disabled. Like Down’s syndrome. But Luke looks exactly normal. He just doesn’t talk, makes weird noises, and sometimes flaps his hands.

It is hard to know how much he understands. He understands some phrases and words when they are repeated a lot. But other times he seems to have no idea what I am saying. It is extremely frustrating.

Luke asks for food by going over to the refrigerator or pantry and grunting. We have worked really hard on getting him to say some words. Right now he will say “Ah” for “up” to be picked up so that he can reach what food he wants. He can also say “ga” for “Go” to go outside or “Oww” for “out” to have us open the back door. He says “kaka” for cracker and “mmm” sometimes for milk. But usually we have to prompt him to say these things.

His teachers at school have heard him say about 20-30 different words at different times. But he really doesn’t want to use those words on a consistent basis. You have to pull them out of him. We hold up a cookie and say “Coo…kie”. He will say “KAh” and “eee” if we try long enough.

Honestly, his communication is exasperating at times. He will learn a word like “chip” and be able to say it well for a few months. And then something will change and he won’t want to say it anymore! I admit that my motivation and commitment to keep working on words is a challenge. Sometimes I feel so depressed about his communication skills.

Sleeping

Getting to sleep and staying asleep can be very challenging for autistic kids. Luke was always a pretty good sleeper until about 2 years old. But now, we usually have to give him .25 mg of melatonin every night to help him calm down and fall asleep.

And he doesn’t usually sleep in a bed like this picture. He doesn’t understand how to use pillows and blankets like a normal person. He just sleep all over the bed where he wants like this:

And then about once a week or once every two weeks, he wakes up in the middle of the night and can’t go back to sleep for a few hours. We don’t really know why he wakes up. He never seems upset. He just seems ready to go and wide awake. We usually have to give him more melatonin when he wakes up, or just let him wear himself out in his room for a few hours before he goes back to sleep.

Playing

My son Luke struggles to play. He doesn’t really play with toys very well. He mostly like to put toys in his mouth and see what they feel like. He doesn’t interact with other children. If they talk to him, he ignores them. But sometimes he will watch what they are doing and want to be in the same area as them.

His lack of playing makes it hard to know what to do with him all day! Luke likes very physical play. He wants you to bounce on the trampoline, swing him, or rough house. He doesn’t want to sit and stack blocks, play with cars on a track, or do legos. He doesn’t even like to watch movies very much anymore. So his days usually consist of going to parks and roaming around the house getting into stuff.

Therapies

Luke goes to a lot of therapies. It can be both time-consuming and frustrating and invigorating and fun. He has speech therapy where we work on helping him communicate. He has food therapy where we work on trying new foods and textures. He has occupational therapy where we work on interacting with people and functioning in daily life. He goes to 30 hours of ABA therapy/school where he works on all of these things.

A note on ABA therapy: there are many different types of ABA therapy. Some are more strict than others. Some use DTT for everything. DTT is Distinct Trial Training where they sit the child down and run drill after drill. It is not the most effective therapy. Try to get a company that does more PRT (Pivotal Response Training). PRT uses more natural reinforcement, instead of artificially giving a child a treat every time they do something good. If you have options other than ABA in your area (like a company that uses Floortime techniques or the Denver Early Start Model), I would look into them. I use ABA because I need a break and there is no better option in my area.

Sometimes I feel so drained after therapies. Sometimes I feel like I can’t do it all. I can’t possibly do everything the therapist tells me to do. I just have no more energy. Other days, when the therapist says that they see progress in Luke, I feel elated. In this way, having an autistic son feel like being on an emotional roller coaster.

Overall

Life with an autistic nonverbal child is not easy. Sometimes it feels like my burdens with Luke are too much to bear. How can one child struggle with talking, eating, sleeping, and playing? He struggles with everything! We have to do intense therapies and problem solving for everything!

But I sincerely hope that through all of this, I will learn. I am learning patience and love everyday.

4 Comments

  • Anne
    December 21, 2020 at 7:32 pm

    Hi!
    I just wanted to say that it was reassuring to read how you feel about how your son is doing. Thank you for sharing. I have a 3 year old son who has a lot in common with your descriptions of your son, particularly about speech, how he plays or doesn’t play, and going out to places. I really relate to you. Makes me want to give you a hug. 🙂
    Anne

    Reply
    • Sage Allen, MS
      January 21, 2021 at 1:35 pm

      Thank you so much! It is always a breath of fresh air to find someone who understands our unique struggles. 🙂

      Reply
  • Margaret Russell
    December 1, 2023 at 12:03 am

    Wow! I realize I’m a few years late seeing/replying to this, but I’m going to reply anyway 🙃
    I’m not sure how old your handsome little man is now, but I’d love to know his progress.
    Your post reminds me so much of my girl, my despair at times, my elation at times, exhaustion, how can this be?, and with me…sometimes the feeling, I just can’t do this.
    My girl—now 15, a beautiful light in this world. Extremely low chances of getting pregnant (untreated endometriosis apparently for an estimated 24 years), with one ovary, fallopian tubes like tree bark (but open), the good Lord decided to bless me with my miracle. Most precious gift He’d ever given me. But wait…what? Autism? But I prayed…
    See, ever since I’d seen Jenny McCarthy with her son Evan on television years before, Autism terrified me. I thought how awful to have this bright, smiling, engaged child disappear right before your eyes and there’s nothing you can do but watch them fade. I had prayed for health but specifically please not autism. Yet here I was, watching my blond haired, blue eyed, giggly camera hound sit, facing walls, spinning ducks on the one toy she would play with, rubbing a finger across every page of “Good Night Moon” when she used to turn the pages for me at 4 months old, and the most heartbreaking, recoiling from hugs, snuggling, or anything affectionate. I still believe in God, still pray, still have faith even, however, I have also done plenty of screaming at Him, telling Him I don’t understand, asking Him “how could you?”, and telling Him he’s cruel. In the end, I listen to “That’s What Faith Can Do”(Kutless), “Even Here”(Rebekah Dawn feat. Allan Sucra), or something similar, cry like a baby, ask forgiveness and plead with God not to leave me alone to raise up this lovely girl He has entrusted me with.
    So, at 15, Maranda Drew has had to endure “swapping” between2 very different environments since her daddy decided he was “done” with our 22 year marriage (and her therapies—his insurance, and her gluten free diet). She self harms now, causing bruising so bad, we’ve been investigated 3 times by DSS (determined unfounded each time-than God). It is still very hard and frustrating not to know just what she comprehends. I’ve been working on “yes” for God knows how long, and about 2 weeks ago, I asked if she wanted more chips (ONLY Cape Cod original) and just like she’s been doing it all along, she looked at me and said “yes”. I high fived her and told her, “you got it! All on your own!” She smiled so big. After she got “yes” several times in different situations, I excitedly told her we’d learn “No”, and assured her it would be easy now that she knew “yes”. So after about 4 days of “it’s question time” (with a cute little handclap to go along), the last time we did yes and no, she got all 5 right. I’m keeping it short and easy peasy right now.
    Anyway, Maranda can say alot more than she could just a year ago. I started something new with her. I think at school and past therapies, all the repeating, “say this” and “do this”, it was limiting her. I have started asking her to get things for me. Just one step direction right now, all words that I know she knows. She’s almost a little panicky which makes me sad and it causes her anxiety but I just reassure her alot and when she thinks she can’t or that doesn’t know how, I just tell her that’s ok, and I walk her through all of the words I said and we do it together. Sometimes, when I say, “see, I promised you knew all the words and you could do it” and she’ll smile a little smile like, yep, I knew that. I could’ve done that all by myself. Her requests and words really began coming. She knows words I didn’t know she knew. But still not at all conversational. I always remind her when she gets frustrated, even when you think you don’t know and I help you through it, you’re still learning—you’re ALWAYS learning!
    Geez, this is a “short story”. If you decide to publish, just share the profits lol.
    Thank so much for your honesty and for posting!
    Oh, Maranda Drew’s diet:
    * Peanut butter sandwiches—no crust
    * Cape Cod Original Chips
    * Cheesy bread (Bellacino’s, Papa John’s’s)
    * Yogurt (no fruit pieces)
    * Pretzel (snaps/sticks) sometimes
    * Goldfish sometimes
    * Chicken w/avocado blended together (mush)
    * occasional fig newton or plain granola bar w/peanut butter
    * Pecan spinwheel (Little Debbie)
    * Juicy juice (I never quit diluting it, 1/3 juice to 2/3 water ••• shhh!).
    Upside—no candy, no ice cream, no chocolate, no cake, no Twinkies/snowballs/Suzy Q’s…all the things mommy shouldn’t eat 🙄
    My Girl, my miracle…my heart on two legs (that can take or leave me alot of the time and headbutts me once in awhile 🙂).
    Oh, not even gonna touch sleeping. I’ll just say, I have narcolepsy which means alot of caffeine, and I dare not miss my armodafinil or Dexedrine on days I have my girl. Then nights when we have the 2:00 wake up calls…” Feet on the floor Mom, feet on the floor “. When she’s feeling polite, it’s “Mom, get up please, Mom, get up please” , and there is no such thing as patience. If I don’t move fast enough, it could mean forehead to a door jamb. Hard.
    My heart goes out to you and all of the others on this journey called autism. We wake every morning to a beautiful rose along with its stem of thorns, yet we must take it into our hands. The thorns it seems are direct links to the heart, and every day, at least one of those thorns is going to draw blood— but the rose is still just as beautiful.
    Love, blessings and prayers— Maggie

    Reply
    • Sage Allen, MS
      December 1, 2023 at 6:31 am

      Wow, that was beautiful. Thank you so much for sharing. Even though this post is a few years old, not much in my life has changed. Autism is still extremely hard and feels like an enormous challenge. Thank you for sharing your experiences and how you keep going!!

      Reply

Leave a Reply