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. Cynthia says:

    You just described me! My son is 16 yrs old. I am more exhausted now than when he was a toddler. Thank you for understanding.

    • fairfax3 says:

      My son is 8 . He was diagnosed last January with Autism and oppositional defiance disorder. I am currently separated sue to multiple infidelities. I work 2 jobs 14-16 hrs a day 6 days a week . I have been through 10 sitters with the 11th just giving me notice today .I had to work extremely hard to catch upon the mortgae that the soon to be exhusn=vand didnt pay for 9months . I was weeks away from foreclosure and didnt even know it , he was taking the mail. I am on the verge of a nervous breakdown. Fatigue doesnt even come close ..I have tried to get him counselling last december but no one has called back … Dont know where to turn

    • You are overwhelmed with multiple issues. Is there someone that can help you formulate a plan – even a friend? It can help to prioritize and decide what things are the most important to deal with and what can wait. Childcare would be a top priority and the issue you would want to focus the most attention on. Once that is in place, look at the next problem and possible solutions. I don’t know where you live in the world, but there are organizations who can help you such as your local autism society. They often can point you in the right direction for resources or who to contact. In regards to finances, a credit counselor can help you come up with a plan on how to manage your bills.

  2. Ben m says:

    Looking forr help for my 22 yr old step son who is autistic and has Asperger’s he was diagnosed early age and when he turned 18 Social Security took his benefits away and said that he no longer needs them when we applied for them again when he turn 18 they denied him twice and said that they find that he’s not autistic which I don’t really understand I really don’t know what to do because he can’t function in the real world when he try to live on his own he became homeless got into drugs and now he’s back home he just can’t get a job and has no education I’m overwhelmed.

  3. This article rings true on so many levels. I life coach parents and caregivers raising children with various disabilities. I help them implement simple yet effective self care strategies so they can feel less overwhelmed and stressed. I’ll be sharing this article with them. 

  4. I am autistic and struggling to make the transition to college. I appreciate your candid reflection on what it is like to have an autistic brain.

  5. Samia says:

    This was a good article right up until they started talking about ‘just’ taking time for yourself. That’s nearly impossible for most ASD parents. Not only do you need a babysitter with specialized training but YOUR OWN kids have to get used to them and feel safe. That requires money they don’t often have. Then there’s the fact that even loving family members find your kids too overwhelming to deal with much of the time. Then there’s the problem that most ASD families are scrambling to pay regular bills and pay for all the extra therapies needed just for the small chance the kids can grow up to be self sufficient and independent. There is. no. extra. money. Money goes to doctors and therapists, not piano, dance, swimming, or other fun lessons. Forget about any money for a night out or investing in your own hobby. Plus, the timing of the said therapies, schooling, etc, takes up most of every day so “JUST” taking time for yourself usually means staying up late and sacrificing more sleep.
    Yeah, it was a good article up until that point.

    • Jenny says:

      I was very lucky on the sleep issue. My child  fortunately it was a good sleeper and at 11 still is. He’s hitting puberty now and I hope that does not change. However the first years were extremely fatiguing stressful. Every day spent with him teaching him. I don’t remember ever doing anything for myself. They say do something for yourself well it was just me so I couldn’t do that in my family wasn’t supportive. I was his support.  His private autistic school was supportive of him but not me. I tried the respite thing and it was a 2 year waiting list. I didn’t have two years. However now I have found that I have quite a bit of time. He’s doing so well that he showers it by himself now he dresses himself he brushes his teeth he does his own hair.  However all of this again took so much out of me because it was me teaching him everything. And I do believe that it is affecting me still. That it hasn’t just healed me overnight. I have stomach problems. I have sleep issues. I gave so much of myself to him that I lost myself and I have to regain that somehow.  When we all know that autism can be extremely isolating and it was for years. I read an article along time ago that said parents of autistic children have the same stress levels of those of combat soldiers. Being fired upon 24/7 That soldiers that are just sitting around but soldiers that are literally in extreme stressful positions.  From age 1 to 5 that’s how it felt. 

    • Jenny, thank you for taking the time to write. Your positive story gives hope.

    • Rachel says:

      Well said. 
      I feel like a broken record when we are told to take time for ourselves. When and with what money? 
      When we are told we should pursue therapy for ourselves. When and with what money? 
      A date night with my husband is only a distant memory. 

    • The last time my husband and I went anywhere alone together was December 2006. We have no one that can do overnights for us.

    • Debbie simmons says:

      You have hit the nail on the head

    • Janice says:

      Exactly right, written by someone who really knows. Thank you.

    • Marina says:

      True – there is no extra money or time! Agree 100%

  6. Toby says:

    I cried reading all of these. I have 3 stepsons with autism. The middle boy at 16 is the most severe. When he hit puberty, he developed catatonia on top of the autism. He is non-verbal and not potty trained, and he is now having seizures. My husband does most of the work with him. We have very few nights where we sleep the whole night. The catatonia has taken over his life. Causes him to become like an animal. Shrieking, trying to escape, crawling around on his hands and knees. Smearing feces all over the walls and his bedding. We’re struggling to find a respite worker (because he can be aggressive). We have in-home ABA services weekdays for 2 hours, but we can’t take him anywhere anymore, and we can’t have people over. We’re just isolated with no end in sight. Hard to get doctors to listen and help. He needs ECT for the catatonia. It’s an endless battle dealing with him everyday and dealing with the so-called help out there. Society is not equipped to help with this epidemic of autistic children.

    • Dear Toby,

      Would you allow me to pass on your e-mail to one of my speakers/researchers who just gave a talk for me that covered catatonia? She may be able to help. My heart is just breaking for you. Your situation is truly very challenging and I would like to see if I can get you some more solid answers. May I connect you with Dr. Ruth Aspy?

  7. Tracy Dailey says:

    My son is 19 and Autistic ODD, and a few other things. He graduated june 2017 claims he is working on getting a job, trying for SSI but wants to cancel he fights that he can work multiple jobs and live on his own. The constant fighting is mentally and physically exhausting. He gets aervixes from a non profit for community habilation where staffs helps him gain skills to live on his own but I am just me as a parent his father never believed anything was wrong and ee5 split 17 years ago and dad was never around now in another state. Its hard the older they get to get them motivated.

  8. 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.

    • Fatima says:

      Hey Ali…My four year old son is on ASD and has appraxia .I read your son has appraxia too.Is your son talking?if yes, how old was he? My son is 4 and still totally non verbal.His appraxia is very severe .Does your son go to school?

  9. 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.

    • Michelle says:

      Thank you so much fir your comment. I have kept most of my indifference and intolerance to myself all these years towards family and friends. I’ve heard those exact words and wanted to puke!!!!!

  10. 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?

    • Monica says:

      I have nothing that will help except to tell you I’m with you. My son is 24 and got a job for disabled. The supervisor and job coach think his behavior is a result of my poor parenting, so they can’t really help him.

    • sj, autism mom says:

      Hi. “SSI” allows you, as the disabled child’s payee, to

    • sj, autism mom says:

      Hi. “SSI” allows for ownership of a home as long as it is the only property and as long as you and the disabled child live in it. If you are not legally separated or divorced or living with the father of your child, I would encourage you to research SS benefits rules online as there is some degree of transparency about guidelines to determine need. I am no expert, but as far as I know, child support counts as the child’s income, not yours. Regarding child support, I believe that they want to know how much of that support goes to food and shelter, which is countable, if memory serves. There are incidentals that may not count towards what SS deems countable income. Research and consider getting an advocate if possible, and then reapply. Therapy, child care expense, educational expense, clothing, etc. are also expenses that the primary caretaker’s child support funds are used for. Again, I am no expert, but do not hesitate to contact them. Perhaps you were misinformed about property making you automatically ineligible as a divorced or LEGALLY separated mom. Don’t give up.

    • sj, autism mom says:

      Sorry Sabrina…meant to say: …if you ARE legally separated or divorced and NOT living with the father…” . You understand. I am just a fellow bone-tired ASD mom.

  11. 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.

    • Monica says:

      I don’t need more sleep I need answers, how do i Make this better, what agency or charity will actually help.

  12. 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.

  13. 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.

  14. 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 

  15. 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.

  16. Michele van der Vyver says:

    Very true. I am always exhausted

  17. Shelley Hoffmam says:

    We live in Kent in England 

  18. 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

  19. 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!

  20. 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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