Being a mother is already a difficult task and mothers never seem to catch a break. But being a mother of an autistic child is an added responsibility to tackle. Mothers of children with autism have higher levels of parenting-related stress and depression.
How Parenting an Autistic Child Can Affect Mothers
According to Therapy Associates, the diagnosis of autism for a child affects and impacts the whole life of their family; Parenting an autistic child can have negative impacts on the psychological state of their family. Caregivers of children with autism face stress that can affect their mental, physical, social, and financial wellbeing. Specifically affecting the mothers’ working and social relationships.
Mothers are often the primary caregiver to their children. The concern and stress of constantly worrying if their autistic child will ever live independently, i.e., go to college, have a career, etc., causes them to bear a heavy burden. Feeling all these negative emotions and the expectations of a woman’s role in society are piled on top of a mother’s many worries. These women are not just mothers of autistic children but people with hopes, dreams, and problems outside the role of a mother.
Mothers who feel they are inadequate or failing their autistic child are likely to suffer from depression. Constantly worrying over the “unknowns” and the “what if’s,” mothers of autistic children can also develop anxiety. Symptoms of anxiety include excessive worrying, insomnia, lack of concentration, and irritability. It makes the parenting experience much more difficult and challenging because they are often drained and do not have enough energy to give their child what they feel they need.
In fact, Autism Parenting Magazine reports that about 50% of mothers of children with autism spectrum disorder (ASD) had higher levels of depressive symptoms, compared to 6% - 13% for mothers with neurotypical children. this is based on a 2022 study from The University of California, San Francisco (UCSF).
“Being the parent of a child with special needs is inherently challenging every day,” said Dr. Elissa Epel, PhD, UCSF one of the authors of the study. “It is a prototypical example of chronic stress, which is why we have been focusing on caregiving moms in our studies that examine effects of stress on health.
Autism Moms
In the article In Defense of Autism Moms, Stephannie Bethal says that mothers of autistic children have a very different experience than typical mothers due to their child’s specialized needs. Based on data from a survey she conducted of over one hundred mothers of autistic children, on average, an autistic child participates in at least two therapies, such as occupational, speech, or physical therapy. Mothers are constantly being told by professionals about the issues their child has, and progress is measured by charts, numbers, and assessments.
One mother explained her different parenting experience by saying, “things aren’t always the same as they are with neuro typical children,” and she expressed her hope that others would “understand why we celebrate every little achievement." Another mom voiced her irritation with people comparing “normal” parenting to parenting autistic children, saying, “people are like, oh, well, it’s not that different. I’m like, yeah, because you’re changing diapers on your twelve-year-old. Yeah, I’m gonna go with it’s different." While other mothers may be displaying their child’s soccer trophy, many mothers of autistic children are celebrating their child mastering a skill like hair-brushing or successfully using coping skills to avoid a meltdown.
Emotional response to the diagnosis
Initially, autism moms tend to go through a rollercoaster of emotions regarding their child’s diagnosis depending on their understanding of autism. This usually begins with overwhelming negative feelings. For instance, an article published in the Journal of Autism & Developmental Disorders states that “parents who receive a diagnosis of a significant developmental disability for their child often experience strong emotional reactions that reflect their grief for losing the hoped-for typically developing child”. Hearing that their child has autism can send parents into despair, especially those who are not well-acquainted with autism and have only heard about the negative aspects.
In fact, some mothers directly blame their minimal knowledge about autism for their initial feelings of sadness and grief, including one survey participant who said, “I was sad for [my child] because I did not understand autism, but now that we are [five] years in, I no longer feel sorry for him. I just encourage him to be himself because he is an amazing child”.
Learning from other Autism Moms
Here are three amazing pieces of advice from other Autism moms, sharing their journeys:
Dear Mother of an Autistic Child: A Few Things You Should Know… (from Autism Parenting Magazine)
Hi there, fellow mom,
I, too, have an autistic child, except he’s not a child anymore. His name’s Diego and he’s 26.
You’ll go through various stages when it comes to how you view your child and his/her autism. I’ve been through every stage in the book, so I thought I’d share how it’s gone for me (at least up to now) so you know what to expect and to save you some of the anguish.
You’ll obsess about scores and tests, praying the gaps between below average and average will narrow. One day, you’ll realize testing serves this one purpose: advocating for your child. You’ll understand scores are what matters to society, not what matters to your child.
You’ll feel sick before, during, or after important school meetings. I, for one, had to excuse myself and head to the ladies’ room right before any IEP meeting!
You will not resist the power of denial.
I was convinced I’d “fix” Diego and he’d exit from special education, go to college, and just be quirky. I held on to this idea for so long you could say I was delusional. Anyway, Diego wasn’t “fixed”. He’s still autistic and intellectually disabled.
And so, when Diego aged out of public education, instead of going to college, he accessed new agencies and systems.
I’m here to tell you this: There’s no need to panic. It will be OK.
Here’s something else: You’ll argue a lot with your child’s other parent. My husband and I even disagreed on whether there was anything “wrong” with Diego up until he was nearly three.
You’ll think you have it worse than everyone else.
In case you’re not aware, relationship problems are no less frequent for partners with perfectly “normal” kids.
At times, you’ll think you’re crazy. For a good while, only I had concerns about Diego. Everyone else said he was just a late bloomer.
When Diego lined up his little toys, he was obviously engaged in some interesting geometric feat, my sister said. He went berserk when we took a different route to get to my mom’s house because he was so smart he had learned the way already, my husband insisted; "C’mon, Daniella, he’s just a toddler!"
Anyhow, if Diego’s at all like your child or you’re at all like me, perhaps you’ve moved beyond this God-awful, I-must-be-crazy stage already. As it is, this stage passes relatively early because other, less emotionally attached adults will enter your child’s life.
You’ll feel guilty for not doing enough for your autistic child and for neglecting your other kids. You’ll feel guilty when you lose it. I actually pushed Diego into a pool once because he was driving me nuts. And I bit (yes, bit!) his forearm when he threw a wild tantrum at a store.
Guilt was the one emotion that pulverized my heart.
Fellow mom, if there’s anything I wish for you it is that you learn to forgive yourself quickly. Your child will.
Plus, somehow, something extraordinary will happen. Your parenting experience will evolve so it isn’t frightening anymore. It will still be hard, exhausting, exasperating, and frustrating, but not a constant source of fear and anxiety.
You might accept, embrace, celebrate, or even love aspects of your child you thought you had to battle and extinguish.
He’ll teach you about different kinds of minds.
You’ll learn that financial and physical independence are not the purpose of any life.
Your autistic child might even help you glimpse this truth: that LOVE is the ultimate goal. Love and compassion toward all beings, including yourself.
That’s been the case for me.
Trust me on this: Wherever you are in your journey as a mother, how you feel about it will change. Heck, mine will, too. I might write you a letter about it when Diego’s 50.
Until then, take good care,
Daniella
3 things I want people to know about parenting a child with autism (from Motherly)
My son is autistic. He received an autism spectrum disorder (ASD) diagnosis when he was three years old, which opened the door for a plethora of covered therapies, a rigorous therapy schedule and—on my part—excessive anxiety.
The early years were incredibly difficult, and I do not look back on them fondly. There was too much unknown, too much stress and way too much silence. My son met many milestones shakily, and I tortured myself with whether or not they counted.
When many toddlers were asserting their independence, he was quite passive. Speech and fine motor delays made independence more challenging. He seemed content to have things done for him. During that time, aside from “I love you,” the words I wanted to hear the most were, “I can do it.” It isn’t easy being the mom of a child with autism, and surely not everyone will understand my experience. But here are a few things I’d like for people to understand.
1. My kid’s milestones probably look a lot different than other kids’
For my son, it often takes longer to acquire a new skill. Every parent wants their child to be independent, but the reality is that in the business of everyday life, parents often don’t have the time to nurture a particular skill if it takes some time to acquire. It’s a slippery slope of dependency—but the consequences of not nurturing and supporting independence are serious.
Nurturing independence is even more crucial for kids on the autism spectrum. The statistics are sobering, with 2% attending college, 15% being employed and 1 in 5 living independently since leaving high school.
With my son turning double digits, it was a wakeup call for both of us to start stepping outside our comfort zones. Suddenly, every small step toward independence mattered. As a younger child, he never wanted to be left alone—I needed to be within eyesight, or he would come looking for me. Today, he still prefers that I’m somewhat nearby, but he has progressed to within an earshot.
After some discussion and experimentation, I was able to do short bouts of yard work (with his face sporadically pressed against the window), leave him in the car as I sprinted into Starbucks to pick up my coffee and then he even rode his bike solo around the neighborhood, which gave me a high that lasted close to a week. That bike ride was a milestone on his journey to increased independence for a variety of reasons: following the rules of the road, navigating any chance encounters with strangers and neighbors and returning home within a certain period of time.
After these successes, he was ready for his “first errand”: walking to a mailbox about eight minutes away to drop off (ironically) my life insurance payment. Another reminder of one’s mortality, that I won’t be around for him in perpetuity. I timed this errand so my partner could surreptitiously be in the parking lot nearby to ensure he got there safely. My partner hit some unexpected traffic so never made it in time, but the errand was successful.
When I saw him appear from down the street (this time with my face pressed against the window), I got a feeling I wish I could bottle: that feeling that everything is as it should be, and it will be OK.
The next day, we were at one of our favorite restaurants and he announced he needed to go to the bathroom. As I got up from my chair to escort him, he said, “I can go by myself.” I was shocked and tried to play it cool as he had never done that before. Was it a coincidence that he decided to go on his own after running his first errand? I’ll never know for sure, but I think not.
I share this because achieving independence is something much of the general population takes for granted. I’ve learned that fostering independence takes planning, effort, patience and additional time. My family has made conscious adjustments in our daily lives to build confidence and decrease dependence.
With every success and step forward, it’s easier to imagine what he’ll be doing in the next couple of years. He adores trains, so we have spoken about him taking the train when he gets older. Today, neither of us are ready for that. I’ve realized it’s OK if he takes a bit more time to establish independence as long as he’s making strides to get there—and I’m encouraging it.
2. My experience as a mom is vastly different than yours
When my son was a toddler and I was still reeling from his ASD diagnosis, I tentatively asked one of his therapists that I had grown close with if it was obvious he was autistic. She looked me in the eyes and said without hesitation, “Jane, we all know when a child is different.”
Looking back, I cringe thinking about that moment in time because I desperately wanted him to fit in and be a part of the neurotypical majority. In my mind, life would be easier and more predictable. Today, as a mom squarely in midlife, I know how naïve that mindset was: nothing is guaranteed for any of us—with or without a diagnosis.
Sometimes, in an effort to avoid being uncomfortable, people resort to platitudes about raising kids and make empty predictions about my son’s future. A few that I’ve received over the years: “He’s got good language. My so-and-so’s son was autistic and never spoke. I’m sure he’ll be fine.” Or “Have you tried Therapist X? She did wonders for my neighbor’s child and now you can’t even tell he’s different.”
Some moms have even tried to one-up me and share their experience of when their kid broke a bone and then summed it up with something like “All kids are hard to raise. It takes a village.” Although these comments may be well-intended, they don’t have that effect. I’ve most appreciated when other moms have asked questions rather than make assumptions about my son and his future. I value humor, support and an effort to understand—similar to most moms.
When you’re uncertain of what to do or say, err on the side of being inclusive. Ask for a playdate. Encourage your child to get to know the kid that’s different. Take an extra minute to introduce yourself to the mom sitting alone at a school concert because the other moms already know each other from past playdates. This stuff matters, and I speak from experience.
My son’s early years were some of the loneliest: dealing with all the uncertainty that comes with autism, balancing a full-time career and my son’s therapy schedule, and figuring out my new identity as a mom was overwhelming. On difficult days, I would have welcomed these because one simple gesture can change the trajectory of the day. Trust me.
3. It should be easier to provide meaningful experiences for a child with autism to engage with neurotypical children—outside the school setting
Like most mothers, I will fight to create opportunities for my son to thrive. This can be challenging when it comes to group activities if one’s social skills are not at the same level as peers or if there’s some behavioral unpredictability. As a result, group activities or team sports have not been an active part of my son’s life until late last year (ironically) during the pandemic. Neurotypical humans are a majority in this world—and I’ve always felt it important for my son to understand and get along with them, too.
But how can one develop this important skill if opportunities are limited and kids remain siloed? In my search for meaningful experiences for my son outside the school setting, I’ve primarily come across group activities specifically for kids with disabilities and ones that will consider a child with a disability if an aide or therapist is present. Neither are a good fit for him, as they do not provide the organic real-life experience.
We need more organizations that specialize in kid activities that embrace inclusivity. We need those leading kid activities to be creative and flexible in accommodating a range of different needs alongside neurotypical kids. Whenever this happens, it creates a pathway for understanding and acceptance. That is real life. Without all types of kids contributing to a shared experience, silos will remain.
As a parent of a child with a disability, you simply want to hear, “OK, let’s try it and we’ll go from there.” In the disability community, it doesn’t happen enough. When I told a colleague that my son enrolled in choir, she called him a “trailblazer.” She was referring to the fact that he was the only obviously autistic kid in the group, and his participation would (hopefully) pave the way for others to join.
10 things I’ve learned as a mom to an autistic child (from Motherly)
We’ve been on this journey for five years, and while every day provides its challenges, reminding myself of these things helps us get through the hard times. My son, Channing, is almost six and nonspeaking. We have difficulty doing things that aren’t a part of our normal routine, but we always want to give him the same experiences and opportunities as his peers and his sister. Being the mom of an autistic child isn’t easy, but here’s 10 things I’ve learned that have helped us navigate this journey a little easier.
1. It’s OK to say no.
You know your child better than anyone. If a situation is going to be hard on them and you aren’t prepared to go down that road, don’t. Yes, we should always push outside our comfort zones and try things with our kids to see if it’s something they enjoy. However, you should never do it when you haven’t fully prepared. It’s OK to say no. Say no to the birthday party everyone is going to and you hate to miss, say no to a play date you aren’t up for. It’s OK. I know it’s hard and you want to say yes, and the day will come when you can. But remember it’s OK to say no and sometimes it really is best if you do.
2. Enjoy each stage.
This is a hard one for me as we recently went through a stage of sleepless nights and a need for me to lay in bed with Channing until he fell asleep. It was a quick stage, but while it was going on, it was exhausting. However, I did not for one second take advantage of those snuggles. I never get those snuggles and they were so needed and loved. Now, that stage is over. I miss the snuggles but I am so glad I chose to relish in them. Some stages will not pass so quickly, and you will pray they would… but remember, they will pass. And what could come next may be even harder than the stage you are currently in, so do your best to enjoy what you can out of each stage.
3. Ask for help.
I straight up moved next door to my mama within months of Channing’s diagnosis. I needed help. I still need help. Every.Single.Day. I am not one of those moms who can take multiple kids on outings by herself (see #1… I normally have to say no). I have to ask for help, and I have to be okay with receiving help.
4. Take time for yourself.
This is 100% easier said than done and I know some of you don’t even have the option of time for yourself. However, it is so important. I never ever imagined I would be a stay-at-home mom. I never wanted to be a stay-at-home mom. But here I am… and I know that to keep from going bonkers, I have to take time for myself. Even if it’s a 50-minute Barre class, a 10-minute drive around the block, or an entire weekend away. I need it, and I need it as often as I can get it. And I can bet you do too.
5. Never give up.
Never throw in the towel. There are times when I think I cannot do it any more. I can’t keep talking to him in the backseat when he doesn’t respond. Will he ever respond? Why am I even talking and asking him questions I know he won’t answer? But in times like these, I remember… he is counting on me. He needs me. I can’t give up on him and I can never let him think for a second I would. So I’ll keep talking to him, I’ll keep asking him those questions and I will never give up hope that one day he will say, “Thank you for always talking to me, Mommy, even when I didn’t respond.”
6. There are understanding people, and there are uninformed people.
You will come across some seriously understanding people who will let you jump in front of them in line when your child is upset just so you can leave the store faster. You will also come across seriously uninformed people who will say, “Awww, someone isn’t going to get a turn on the train if they don’t wait patiently and be still.” Yes, someone said that to us. Someone very uniformed. You have to remember that people don’t always understand your situation and may say things that are incredibly hurtful and flat-out wrong. Thank the kind ones and ignore the others. They don’t deserve an explanation and they probably wouldn’t understand it if you gave them one.
7. Don’t compare your child’s autism journey with those of other children with autism.
I have struggled with this. Every child with autism is different. Every child’s journey with autism is different. I was constantly comparing Channing to those other children with autism and trying to figure out how they are able to talk and he isn’t. Then I realized some of them had certain behavioral problems that were extremely difficult to overcome that we did not have with Channing. So while I was just wishing my son would talk like their child, they were probably wishing their child would behave like mine. All of that to say, everyone is on their own path when it comes to ASD. No two are alike, and you can’t compare them.
8. Try new things, but have a back-up plan.
As I said in #1, it’s OK to say no. But it is also OK to say yes… when you are ready. However, always have a back-up plan. It will reduce your anxiety when trying new things and hopefully set you up to succeed instead of fail. For example, we recently went to Carowinds,) an amusement park here in Charlotte, North Carolina. We drove two separate cars to the park, packed two bags of Skittles, a change of clothes, and pull-ups. We ended up not needing the two separate cars, the change of clothes, or the pull-ups… but we did tap into both bags of Skittles! I always knew in the back of my mind that if one child was having fun and the other wasn’t, we had the option to send one home. It kept my anxiety down and we had a great visit. A back-up plan is a must, in my opinion. I also always prepare myself for the worst and am normally pleasantly surprised (normally).
9. Advocate, advocate, advocate.
No one is going to fight for your child like you are. If you want something to happen, you’re going to have to fight. Whether it’s at the doctor’s office and you feel like you aren’t being heard, or at therapy and you feel like the therapist isn’t a good match. No matter what it is, you will have to do the advocating if you want to see the change. You can. And they are worth it.
10. Don’t dwell on the future.
I really need a tattoo of this one. I am the world’s worst at dwelling on the future. One look at my google search history would prove as much. However, I really feel like I am the happiest and most appreciative when I do not focus on the “what ifs”. When I think about the positives going on here and now, I find the strength to keep going. When I think about the future and the “unknown”, I want to give up. So, I say focus on the positives and remember the future is completely out of our control anyway. (Unless you find a way to see into the future, then let me know.)
Lastly, something to remember:
“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes.”
Dr. Temple Grandin
“Autism parents are strong, determined, and fiercely protective. They face challenges others can’t imagine, and they never give up.”
Unknown
“When you change the way you look at things, the things you look at change.”
Wayne Dyer
“Every child is a different kind of flower, and all together, they make this world a beautiful garden.”
Unknown
“Autism is not a choice. However, acceptance is. Imagine if the one thing people judged you on was the one thing you couldn’t change.”
Stuart Duncan