What Happens When My Child With Autism Grows Up?

She looked at me, right in the eyes, and smiled. She nodded knowingly, and then went back to her son, who was loudly lecturing her on the prices of bread.

He looked, in my opinion, to be about 25. He looked, in my opinion, to be somewhere on the spectrum.

She was doing exactly the same thing I was – my son was with me and was currently lecturing me about the price of beef tenderloin vs. smaller cuts, not bread. My son was wearing crocs and loose fitting shorts. So was her’s. My son was rocking a bit and pacing as he talked, his arms crossed in front of him. So was her’s.

It was surreal and cool and super scary all at the same time. 13 years from now. Exactly the same?

What Happens When My Child With Autism Grows Up?

When the social skills therapist asked me to describe him at four and five years old, I felt sad. I felt really sad, and I couldn’t quite figure out why. When we left, I told my husband. “Every single time we go to a new doctor, I feel a sense of depression and loss – even when it’s a really good doctor – and I don’t know why.”

Later that night, as I was trying to fall asleep, it hit me like a ton of bricks.

I miss not knowing.

I miss what it felt like to have a son who was just a little boy. A boy I could still dream of being the valedictorian of his graduating class. A boy I could dream of being popular and having to fight off the girls.

I miss what it felt like to have a son who was just a little boy, and did not have a diagnosis.

It may be wrong to say that, because the truth is, this is about me, not him. My son could care less about all the things I used to hope for and dream about. This is about me.

And, the more I think about my son in the future, the more I have to let go of my expectations…and learn how to let go of him.


What Happens When My Child With Autism Grows Up?

I see glimpses of it, every now and then…how he will be as an adult.

Sometimes, it’s so sweet and encouraging.

Most of the time, it reminds me that my expectations of his adulthood have to shift.

Like the time he completely froze because they had changed the layout of the grocery store, and he could no longer find his way to the Asian food aisle. He started to panic, as though the aisle and the foods were lost to him forever. What if I wasn’t there to show him the new aisle?

Like the time another child asked what was wrong with him and he shrugged his shoulders and kept talking about reptiles. What if I wasn’t there to encourage him to engage with that child?

Like the time we were on the plane, ready to take off, and they said we had to de-board because of an emergency.  He couldn’t do it. He was stuck. The plane was supposed to take off. In his mind, we weren’t supposed to have to go back into the airport again. I had to drag him, kicking and screaming back into the airport.

What if I wasn’t there to do that? Would they have called security? Or worse yet, the police?

Navigating the world is difficult for my son.

Navigating the world without me? Well, sometimes, that seems impossible. It is hard to imagine it being dramatically different when he is 18, or 21, or, 25.


Then, I see the momma in line, with her twenty-something son, at Costco.

And it looks the same.

And I cry.

I cry for me. He is comfortable with who he is and what he loves. But me? I have no idea how to help him make that work in the outside world.

I cry because it looks the same. Because I can’t imagine another 13 years of this.

I cry because I am afraid for what happens when I am no longer here.

I am grateful my son has a strong sense of self. I am grateful he has very little knowledge of how many people there are in the world that will make fun of him, haze him, duct tape him to poles, and arrest him, just because of who he is and how his brain is made.

I am grateful he has no idea.

But I do.

So we go to therapies and social skills groups. We practice in the grocery store and in the airport. We navigate every playdate and group activity, as if it is completely normal for me to be a participant as well.

We are learning that his future depends on now. As he gets closer and closer to the teenage years, it feels like an hourglass has been turned over. Our time to help, to manage, to instruct, and to practice is running out.

Oh my goodness, I couldn’t love this child more and even though I am sad and terrified and overwhelmed, I still have hope.

Now faith is being sure of what we hope for and certain of what we do not see. – Hebrews 11:1

I am learning to be more sure. I am practicing being more certain.

I pray and I pray for the faith not to fear and worry.

I pray and I pray for the faith to use my time with this child for good and for joy and for love and for peace.

I pray and I pray for the faith to trust that this will all work out, exactly as it is supposed to.

And if that means I am still shopping in Costco with my son at 25?

Well then, what a blessing.

This post first appeared here on Not The Former Things in 2014.


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  1. Such a brutiful post. I love that you honestly acknowledge the fears, yet still cling to the hope of God.

    1. Thank you so much, Cat.

  2. My daughter doesn’t have autism, she has CHARGE Syndrome, and she is only 6 months old. But so often I catch myself worrying about what happens when she is older. In all likelihood she will need constant supervision, and I hope that by the time she is that old there are still good supports and systems in place to help her and me.

    1. Thank you so much for sharing. So many of us, with children that have so many unique circumstances, feel the same way. We share a momma’s heart I guess.
      Praying for you and your little girl tonight.

    2. My friend’s daughter has CHARGE. My friend’s name is Julie Meekins and her and her husband Tom run a business March Forth Family. Google it and receive her newsletter, look at her website, etc. Her daughter is 16 I think and she can give you some ideas on what to do. Julie is a neurodevelopmentalist that has helped me with my autistic son. Blessings to you.

      1. Thank you so much for posting this information, Cindy!

  3. I hear you about the next 13 years! Our son is blind, high-functioning autistic and what I call developmentally delayed. At 13 he’s more like 8,,,or sometimes 6. He plays very well with the next-door neighbor’s 4 year old, which is both sweet and breaks my heart. He goes to Overbrook School for the Blind, which has wonderful teachers, therapists and staff, but even they cannot predict the future. Oh, how I want someone to do that. My three NT kids–all college bound, I’m sure. And Ethan is bright, considering. He reads Braille better than anyone in his middle school. But can he wash his own body? Wipe his own bottom? Brush his own teeth? No, no, no. Will he go to college? Live with us? Live in a group home? Be independent? Understand God, although I trust that God’s mercy outweighs his justice and that He understands what Ethan can and cannot understand.

    I know we don’t walk the same journey–we don’t have the sensory issues, you don’t have the blindness. But your voice has been one I’ve been grateful to hear. Your words often speak to our life’s difficulties and people’s lack of understanding. Thank you.

    1. Every single option you listed is one I have gone around and around with as well. Although our children are unique to one another, our mother’s hearts are so very much the same.
      Thank you for your kind words and encouragement!
      Love to you and yours tonight,

  4. Ann Bledsoe says:

    I’m the mom with the 25 year old at Costco. I feel a bitters weet sense of recognition when I see a young mom. It’s a sorority none of us wanted to be part of, but it’s a powerful bond. Now I’m thinking that maybe my son and I will go to a nursing home together when I can no longer take care of him. And I feel okay about it. You child may not change, but you will.

    1. Oh my goodness, Ann. “Your child may not change, but you will.” – I want to post that on my mirror and write it on my hand. So very well said. Thank you for sharing your experience. It is always encouraging to hear from a mom further down the road.

  5. Rachel T. says:

    I LOVE that he’s lecturing you on the best purchase. That’s a wonderful thing, and a great moment for you to teach him. Praise him if he’s right. If he’s wrong, explain to him why the other item is the better purchase. Give him knowledge, and he will learn. As mothers, there are certain things we will always worry about. And we’ll find new things to worry about along the way! 🙂 For me… the hardest part is that he’s an only child. I can’t imagine him having to make the decisions for us when we’re older. And I worry about relationships constantly. Will he be able, like me, to have a family of his own? If so, what kind of partner will he make for someone else? If not… Who will love him when I’m gone?

    I know each of our children will have a different level of independence. And some may not be able to independent at all. I think if you have a child on the high-end, take every opportunity to instruct him, to teach him what he needs to know to make a “logical decision”. “This is the question… Here are the facts… Here are the values I also have to consider… Here’s the decision that I am making and this is why…” Communicate these things to him. Others may have to go another route. I applaud the mom who is thinking about taking her child to the home with her. What a tough decision! I would recommend getting him used to the environment now. Perhaps taking him and doing “volunteer work” at an Assisted Living Facility. Even if all he does is sit and watch TV while you mingle. The goal, I think, would be to make him comfortable in that environment. Make him comfortable with the elderly. Show him acceptable behaviors in that environment. And figure out what he can and can’t do, so he can have some independence when this becomes his life. Just some thoughts.

    Last thought… You mentioned worrying about behaviors when he gets older. There’s a group here, started by our Speech-Language Pathologist, that goes around the state and teaches Emergency personnel (policemen, firemen, EMT’s…) about Autism, recognizing it and tricks on working with these individuals in a positive way. How to calm down a scared Aspie/Autistic individual. In fact, our State Legislature has added this class as a way for Emergency Responders to earn their annual Continued Education credits. We’ve been invited to the State EMT Conference twice to participate in role-play with EMT’s and our son. I have voiced many times my desire for it to be a National program, required of all Law Enforcement Officers, Fire-fighters and EMT’s.

    1. I have often thought about the need to educate Emergency Responders, especially Law Enforcement, about this. Please let me know if there is any way you think I can help!
      And thank you again for all of your insight. It is invaluable to me as a momma.

  6. I have two amazing sons on the spectrum, they are now 23 and 25 years old . . . Now, I don’t even remember the plans I might once have made when thoughts of their future drifted through my dreams, I made new dreams as they grew, I learned and grew right along with them. As they changed, so did my hopes and dreams. I realized one day shortly before my oldest graduated high school that I’d stopped thinking so much about the future, that my dreams had come true in so many ways. Now I think back to those days when they were young and the future seemed so distant and scary, those days I thought would never end and I smile, we did it, together, and now, the future simply unfolds one day at a time. I’d be lying if I said I never thought about it or even let the fear of it enter my mind, but when I do, I think about how far we’ve come, how far they have come and I know no matter what the future holds, it will be okay . . . and, they make sure I always get the best deals at Costco 🙂

  7. I’m so grateful for coming across this page and reading about the same fears I have sometimes u accept br it’s wen u come between family and they still don’t get it that’s wen it frustrates me I’ve given them info my daughter has asberger symdrome she’s 17 yr 3 at a skills school and wil be finishing nxt year u knw there were times I thought I’m blessed jst to have her and dnt worry about the accalaides bt she amazes me receiving certificate 2 yrs in a row for office administration even though I knw it will be difficult for her to cope in a industry I’m proud of my girl have faith stay positive nt always easy things to do bt I see God’s hand and that calms me stay strong moms

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