Woman who work and care of house is exhausted and stressed of her workload: Parental fatigue ASD

Bone Tired: Autism and Parental Fatigue

One of my most popular Facebook posts this month was about University of Regina’s Sarah Elizabeth Ivens’ thesis about parental fatigue entitled Fatigue in parents of children with Autism Spectrum Disorders: The role of parental and child factors for mothers and fathers.

While most parents of newborn children have experienced some level of fatigue, many of us who have children on the spectrum live our lives with a deep sense of exhaustion well past the first few years. On top of all the other “regular parenting” challenges, there are often sleep disorders, special dietary needs, and a level of daily long term help that our children need. While most parents hit certain age-milestones that lesson their loads somewhat (like potty training, self-feeding, dressing etc…), for many parents with kids with ASD, this kind of hands-on parenting can continue well into the teens – or forever.

Fatigue is not the same as being tired

Ms. Ivens stated, “Fatigue is a sense of exhaustion that cannot be resolved by getting rest. It’s not just being tired. If you’re tired, then you can go to bed early, sleep in and the next day you’re feeling better. That’s not the case with fatigue.”

In the study, fatigue is distinguished by three factors:

  1. Unlike tiredness, fatigue does not seem to be relieved by rest.
  2. Fatigue is always perceived as a negative experience, while tiredness may be perceived as positive following a satisfying activity.
  3. Although fatigue is related to depression, fatigue questions assessed exhaustion and energy while the depression questions are focused on mood and ahedonia (the inability to feel pleasure).

Ms. Ivens is the first person to study fatigue in parents who have children with ASD over the age of 5. ASD children tend to have poor sleep patterns so parents are still up in the night with them for years after early childhood. Fatigue has a big impact on well-being and the ability to parent.

How does fatigue impact parents with children who have autism?

Fatigue not only impacts the parents health in terms of their own cognitive functioning, but it also impedes their ability to cope. Exhaustion can cause impaired functioning, forgetfulness, and reduced patience to such a degree that even normal activities can feel like overwhelming tasks. As Ms. Ivans states in her paper:

One possible reason for this is that parents experiencing greater levels of fatigue may perceive their children’s behaviour as more challenging (Cooklin et al.,2012). This could potentially lead to a feedback loop of problematic behaviour and outcomes as parents are less well-equipped to deal with children’s problematic behaviour.

Raising a child requires the ability to balance multiple roles, the flexibility to adapt to the child’s changing needs, and the energy to effectively parent and respond to needs. The reduced mental and physical functioning that is a component of fatigue can make these behaviours more challenging…In sum, parents experiencing higher levels of fatigue find parenting less rewarding and more challenging than parents who are less fatigued.

What can you do to help yourself if you are experiencing fatigue?

ASD has been clinically identified as one of the most stressful of all the developmental disorders. With food disorders, speech disorders, and high co-morbidity levels with other conditions such as seizure disorders, it’s often a life-long process to help your children become as independent and fully realized as possible. While it can be incredibly rewarding as we all know, it is important to recognize when you need some respite from the extra challenges.

Get help: try and find a support system that works for you. This includes other family members, and any or all government support programs.

Take a break: once you have some support, try and take a few hours – or even a few days – to yourself. It’s amazing how much difference a day makes.

Do something just for you: while we all need sleep, feeding your own personal interests and life joys is important too. Join a choir, take a painting class, or join a gym. Making time for your own enjoyments is essential.

“It’s important to understand that these parents have these challenges and these impacts from what they’re navigating,” Ms. Ivens said. “They need support to fulfil that role to the best of their ability.”

For further reading, have a look at More than a Mom, Optimistic Parenting, and Autism in Family: Caring and Coping Together.

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  1. AliWright says:

    I have an 8 year old son with autism, mild ID and apraxia. I know too well about sleep deprivation, i listen to other patents complain how they’re tired but they don’t know about the fatigue we asd parents or other patents with special needs go through. I have to keep myself busy all day because of i sit down i fall asleep. No matter how much i sleep it’s not enough! I have to always be on guard so he doesn’t make messes or tries to sneak out of the house and run into the street. I love him to death but, i always wonder when does the exhaustion end?

    • I think things do get better. I used to be a fatigued mom, but feel much better now that my children are older and can keep themselves occupied. I helped them to develop interests and those have really taken off. I did not have a full night’s sleep for the first 10 years I had my children. We still have periods where sleep becomes an issue but I get right on it as soon as I see the potential for sleep problems to start up again which in turn causes me to lose sleep. I move all day long, never sit down, and can sleep sitting up.

  2. Crystal Coleman says:

    What makes it worse for me is the same tired, old platitudes with no actual help. It is infuriating! Don’t “encourage” me; get off your duff and HELP me. My husband works 12-14 hours a day, and I stay at home. In the school year, I feel so much better. I have time to myself. The summers are a different story. I joke (with serious undertones) that it is about time for my “annual summertime psychosis”. I hold so much bitterness to family members around my husband and me. They see me clearly about to have a nervous breakdown, and all I get is superficial “encouragement”. I have had family members come out and say, “Look, I feel bad for you, but so just can’t handle it. You can deal with it. I can’t.” I almost slapped my aunt when she told me that. For some of us, without school, there is no respite. 

    • The summers are long. When my two started high school, they had 10 weeks off every summer. Neither will do an activity for more than two hours tops outside of the house. No one ever offered to help us either. I wish I could say something encouraging, but I know how hard it can be.

  3. Sabrina Lanier says:

    Where ARE these programs to help? All I have gotten is the run around. DDDS said to go to Easter Seals. Easter Seals said that since she’s not physically disabled, ONLY Autistic *face palm*, that they didnt have a Caregivers program until she is 18…she’s 7. ES told me to get SSI. SSI denied her because we still have a house to live in…for now…but her father is trying to force the sale of the house during asset division. He left US 2 years ago cause it got too hard. And now that we are divorced he’s also trying to make her and I homeless so he can “have a life again” with the money from selling our home. So because we still have a home the house counts against her getting help cause it’s an “asset”. Well, a house can’t go buy groceries and diapers every week…can it? SSI referred me back to DDDS. I am getting NOWHERE while doing it ALL by myself. Her father has only taken her for visitation two nites in 13 weeks. She wakes up screaming/crying/singing several times a nite and starts kicking the walls. She busted so many holes in the drywall that I had a church group come in am wainscot two walls to keep her from kicking thru or throwing her head thru the drywall. I am EXHAUSTED. Respite Care in my state requires two weeks notice. I can’t get 24 hours notice from her father when he cancels, so how can I give Respite 2 weeks notice? I have never been so tired in my life. I can’t even find the time to go to my doctor and get a check up….WHERE are these programs that are supposed to help? Somebody please tell me? I live in Delaware…any advice?

  4. Fozia says:

    I’m mentally tired  all the time people around me don’t understand how hard it is ?

    • Chronic sleep deprivation can really affect one’s mental functioning. I can remember having years of struggling just to make a simple decision. Now that my children are young adults, things are better. I have a new set of worries, but I feel more optimistic.

  5. Candygrammy says:

    It might also be caused by sleeping with one eye and an ear open, in hopes of catching your eloping child before he or she sneaks outside. Many kids with Autism are curious explorers, who sneak away when no one is looking, perhaps to visit a favorite dog or cat in the neighborhood. I don’t know how parents of Autistic kids deal with the stress, the worry, or the lack of sleep. Heaven help them all.

  6. Jane Walker says:

    I damaged my own brain forcing my Asperger’s daughter to learn to use hers.  Literally.  I had too little help–her father would hide in his workshop or den when it was his turn to work with her–and everyone else just kept telling me I was doing fine when I said I wasn’t.

    I’m now five years into a stress disorder that is both resistant to treatment and is progressively worsening.  I’m at the point of needing help *myself* for the more complex aspects of daily life.  

    I have no suggestions for folks in the early years of dealing with their children’s needs.  Moms are still expected to be able to do it all.

  7. Susan brookes says:

    Can relate to this 3 autistic teenagers and a autistic husband that he had stroke and autism became  worse after that . I am self employed!  Burnt out mum 

  8. Jeannette says:

    You forgot to add toileting. There are many of us who have 10, 12, 14+ year old kids who still don’t use the bathroom unless reminded and then the struggle to have them actually use the bathroom. So hard. Depends only does so much.

    • Very true! My son was not toilet trained until almost age 10. While both of my children are independent now with their toileting, assistance is still required from time to time (reminders to go, hand washing etc.).

    • Yes. My son is 15, and not toilette trained at all. We have some hope for pee training, but not poop. Just went through a week of diarreah too. Sigh. Plus 3 other NT kids including one toddler and one teenager. This article made me cry. I’m so there. I love my kids, I love my life, but the word tired doesn’t even begin to describe it.

  9. Michele van der Vyver says:

    Very true. I am always exhausted

  10. Shelley Hoffmam says:

    We live in Kent in England 

  11. Shelley Hoffmam says:

    I am trouble to find a support network in England for my daughter got  autism spectrum and she 12  we would  like to meet up with children and  mothers and dad  please

  12. Veronica Toscani says:

    Excellent initiative Maureen. As a single mother of a 11 years old child with ASD I recognize myself while reading your article. I have been under a lot of stress for 11 years and have been also diagnosed with breast cancer. Your article contributes to our own understanding of how we feel in our eveeyday life and also helps other people understand us better. Thank you!

  13. Candice says:

    Maureen, as usual, you hit the nail on the head with this post.

    • I know all about fatigue! I had 10 years of less than 4 hours a night of sleep. It was a broken up 4 hours of sleep – not in a chunk. To this day, I can still sleep sitting up or pressed up against a wall. Never feeling rested was an awful feeling.

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