If there’s anything I have learned while raising a child with autism, it’s how easy it is to constantly feel exhausted, burned out, and at the end of my rope. Raising an autistic child requires a lot from parents – physically, mentally, emotionally, financially, socially, and relationally. As a Mom of an autistic child, I thought perhaps other Moms were just doing it better and perhaps felt more put-together. I’ve since learned that because Moms handle the bulk of the daily demands, most (if not all) Moms of autistic children are tired and overwhelmed. This affects the whole family, and when you look at the reasons why, the burnout seems inevitable.
Physically Exhausted Let’s start with talking about what is required physically. Research shows that more than half of those with autism (child and adult alike) have significant sleep issues(1). These sleep issues can come from various things including heightened sensory sensitivity that makes it harder to fall asleep and stay asleep, and from the fact that some people with autism produce less melatonin than neurotypical people(2). Whatever the cause, Moms of autistic children very often do not get the sleep their bodies desperately need. In addition to the lack of sleep, being “on” for 24 hours a day 7 days a week is physically exhausting. The lack of breaks, the physical exertion required, the focus needed – it’s no wonder that Moms are physically exhausted day after day. All of this is added to the regular demands of parenthood. It’s a wonder any of us manage to stay awake!
Mentally Strained What about mentally? Autism comes with a wide array of symptoms, most of which can take a toll on Moms mentally. How does one handle the unpredictability of symptoms such as aggression, tantrums, language deficits, social difficulties, and never knowing exactly what to expect or what may be triggering? Helping children in these areas and being constantly on guard to try and prevent and resolve meltdowns can be a heavy, heavy mental burden. And it’s not an easy one to share with others. Who wants to admit that they have days they don’t like being this child’s Mom? How many Moms feel like they have someone who truly understands what it’s like day in and day out? It’s no wonder Moms of autistic children are regularly left feeling mentally strained.
Emotionally Fragile Closely related to the mental effects is the emotional state of these Moms. Finding out your child has autism can deal a huge blow. Many Moms are left wondering what their child’s life will be like. Will their child ever have friends? Will they be able to function by themselves? Will they be able to leave home and live on their own? Many moms go through a real sense of loss and experience mourning as they come to terms with the life they envisioned for their child when they first got pregnant, and the life they have been led to as a direct result of their child’s autism diagnosis. This can lead to feelings of grief, anger, sadness, and even a loss of hope. This continues on as they compare their children to other kids their age – even though they try not to and know that their child is on a different path. It gets hard to hold in the emotions when others talk about the great things their children are doing and not feeling like others will applaud your child’s milestones that seem so basic and easy for other children.
Financially Restrained Add to all of this the financial stress of raising a child. Psychology Today estimates the cost to be around $60,000 yearly for therapies, education, caregiver time, and health care(3). This doesn’t include other financial needs such as replacing items broken or destroyed during aggression or tantrums, or extra spending on things to help our children fit in better, and the money spent in desperation to make any parts of our lives easier.
Socially Isolated One thing that can easily be overlooked is the social effect raising an autistic child can have on Moms. There may be a degree of embarrassment about how their child behaves, or a very real and constant fear of their child melting down in public. There’s always the option of having a night out without the kids, but who will watch them? It is often hard and takes a lot of effort to find someone with whom Mom feels comfortable leaving their autistic child. And even if Mom does have someone they trust, it sometimes feels nearly impossible to be away from autistic children and not feel constant worry about how they are doing, what will happen to them while Mom is gone, and what repercussions there will be when Mom returns home. An additional social concern is that having a conversation that doesn’t reveal your emotional fragility can be difficult. In many cases, Mom just gets to the point where she avoids going out socially altogether. No matter how hard she tries, her social life is definitely not what it used to be.
Relationally Depleted The final area I’ll consider here is how raising autistic children can affect Moms relationally, especially when it comes to their other children and their spouse. Oftentimes Mom’s energy and patience is used up taking care of the autistic child, so they’re left with little to give to other children and their spouse. It can be difficult for the other children to get quality time with Mom, let alone any time at all. It’s common for siblings of autistic children to have feelings of fear, embarrassment, and resentment, and it can be difficult for mom to help her other children when she is so exhausted from helping her autistic child. Spouses often come in last as far as attention is concerned, and although they are a co-parent helping with the autistic child, there is little left to focus on the marriage relationship, which can leave a strain on the marriage from neglect and stress. On top of everything else Mom is dealing with, the added pressure of knowing she isn’t showing up for her other children and her spouse as she’d like to adds to her stress.
An autism diagnosis affects the whole family, and unsurprisingly, it’s usually in a negative way. You’ve likely heard the maxim “If Momma ain’t happy ain’t nobody happy.” This has been true in my own life and the lives of many other families I know who have autistic children. However, we have only so much to give before we’re empty ourselves. It’s essential to refill ourselves so we don’t continue on feeling completely burned out and hopeless. To help our families, we need to help ourselves.
Espero Retreat is focused on giving Moms of autistic children the renewal they need and reminding them that there is hope for a bright tomorrow. When Moms feel hopeful, they can refocus their energy on love and hope for their families. This strengthening of families with autism (yes, families!) will give hope to many who currently feel hopeless.
Learn how you can support these families by helping Moms of autistic children get the respite and renewal they so desperately need.
- Relia S, Ekambaram V. Pharmacological approach to sleep disturbances in autism spectrum disorders with psychiatric comorbidities: a literature review. Med Sci (Basel). 2018;6(4). doi:10.3390/medsci6040095
- Carmassi C, Palagini L, Caruso D, et al. Systematic review of sleep disturbances and circadian sleep desynchronization in autism spectrum disorder: toward an integrative model of a self-reinforcing loop. Front Psychiatry. 2019;10:366. doi:10.3389/fpsyt.2019.00366
- Parenting a Child with Autism | Psychology Today