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:
- Unlike tiredness, fatigue does not seem to be relieved by rest.
- Fatigue is always perceived as a negative experience, while tiredness may be perceived as positive following a satisfying activity.
- 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, Optimistic Parenting, and Autism in Family: Caring and Coping Together.
Editorial Policy: Autism Awareness Centre believes that education is the key to success in assisting individuals who have autism and related disorders. Autism Awareness Centre’s mission is to ensure our extensive autism resource selection features the newest titles available in North America. Note that the information contained on this web site should not be used as a substitute for medical care and advice.
I babysit my 5 year old autistic granddaughter 5-6 days a week.It is taken a toll on me, I can’t even think straight anymore.I feel so drained.She talks and is highly intelligent but socially she is lacking severely, and she has meltdowns where she screams, hits, throws whatever she can get her hands on, and there’s no stopping her.The problem is other then me my daughter has no one who would babysit her.And realistically she wouldn’t go with them regardless.I am 65 and I didn’t expect Id be caring for my autistic granddaughter at this point in my life.Sure maybe a couple days but this everyday, weekly, I’m at my wits end.I don’t know what to do, I’m just exhausted.
Get help? From my mother with cancer? Who? Take a break? I took a 20 minute drive yesterday and she smashed the windshield on the other car because she was mad I had taken a drive. Do something for yourself? I don’t do yoga, or lift weights, or even read much anymore because my every moment is consumed. This is advise for people with means.
My heart is heavy for all of you. I also adopted kids on the spectrum. In our situation, maturity has helped tremendously. My kids are adults, which brings other challenges, but the constant rage and aggression, sleep issues, food issues, education issues, etc., while still there, are markedly improved. My kids still need constant direction and supervision, but are figuring things out in very small baby steps. I am able to sleep at night (with alarms on kids’ bedroom doors). I am not a young woman and I thought I would be dead from the stress by now. Instead I feel like a warrior who has survived a difficult battle. I am still surviving every day battles. At this stage of life, I have been able to support many who are in the thick of THEIR worst days with child care, cooking, cleaning, errands, education, listening ear. I am still “Bone Tired”, but this new perspective is healing. I know the spectrum is wide and varied and many of you are having experiences much more difficult than mine, but I pray for you all in your battle.
We adopted twin boys both of which are autistic. They are 5.5 years old now. Their bio mom used meth until her placenta erupted due to the meth causing her such high blood pressure. Our boys are also on the fetal alcohol spectrum. Everything everyone has replied and written above we’ve experienced. I’m 54, my husband is 73 with an IED for congestive heart failure. All they do is fight, physically harm each other and keep us in a state of constant stress. Life is not enjoyable. I feel like one of us needs to get another place to live alone with one of the twins as the only time there is any peace is when they are apart. Weekends are absolute hell without having ABA therapy to give us a break for a couple of hours. Our lives are miserable. We have no support. Our parents are either dead or have Alzheimer’s. Our grown children didn’t want us to adopt them after we’d fostered them for the first 17 months of their lives. The majority of our 8 grown kids will not even speak to us. I love these boys but my life and future seems so hopeless. I think about their future and my future constantly. I don’t believe my husband will live another 10 years as his CHF only worsens with time. Most times I want to go to sleep and never wake up again.
Please consider learning about and implementing the Low Arousal Approach. It changed my life as a parent of two autistic children. https://autismawarenesscentre.com/what-is-the-low-arousal-approach-and-how-can-it-benefit-my-family/ and https://autismawarenesscentre.com/addressing-challenging-behavior-and-asd-going-beyond-what-we-see/
My son is ten and he is considered high functioning autistic , adhd and suffers from Misophonia. He was diagnosed around seven years old. He is smart academically but so immature for his age. He has issues with regulating his emotions, understanding social cues and providing self care for himself. It can be very tiring dealing with his meltdowns and assisting him with self are such as dressing and washing himself. He really does not have any friends because of his issues with social interactions with his peers. I worry about his future and him being functional enough to care for himself.
Was your son diagnosed with misophonia or does he fit the criteria after you did some reading about it? An occupational therapist may be able to help you with this auditory difficulty. There is also a really good website to get more information on this – https://misophoniainstitute.org/lets-not-confuse-misophonia-sensory-processing-disorder/ For some ideas on addressing the meltdowns, have a look at this – https://autismawarenesscentre.com/addressing-challenging-behavior-and-asd-going-beyond-what-we-see/
Autism is a lifelong disorder and there will never be a finish line to cross. My two autistic children are now 24 and 22 and we are working on issues and struggles all the time. There is a lot you can do to help your son. For myself, I keep building my skills through webinars, conferences, and constant reading. When I started this journey 22 years ago, I didn’t even know what autism was.
Joining a parent support group can also be helpful because you can learn a lot from other parents and what they are doing to help their child. Your local autism society or association can also help you find the resources you are looking for (social skills groups, life skills training etc. )
Its frustrating when all the advice ultimately leads to: reach out for help from your family or government services. Neither of them want to help at all. So you’re left with advice you can’t access to, and no actual answers.
My parents were not involved when I was a kid, let alone with my own kid. They want pictures of the kid, so they can show their friends at dinners. They don’t want to actually do any sort of work or effort or emotional legwork that comes with being a grandparent. They just want the pictures, and the ability to brag about something positive if it happens. If it doesn’t, well, then they don’t want to hear about it: not their problem.
My attitude on this whole thing is, god bless the internet for giving me all the tools I need to try and help my kid to the best of my ability. My husband and I will do it alone, and when my parents get too old for their parties and friends they can go sit in a home somewhere alone. I’m going to be too BUSY for them…. not having dinners and golfing, mind you. Busy trying to get my kid ready for life before I die.
I am a grandmother of an autistic grandson age 3. He has a sister age 2 and she’s non verbal but doesn’t show signs of autism at all. I’m writing because I’m watching my daughter and her husband deal with this disorder and all they are told is to do therapies (speech, OT, behavior, pre school ) 5 days a week! My grandson is so beautiful to me inside and out. It is so very hard to watch him have these melt downs and to see how he jumps, flaps, bites, screams and has no control over it. He truly has no control. His little sister mimics a lot of what he does not because she’s autistic but because that’s all she sees. You can’t punish him the same way you punish her for poor behavior because he doesn’t understand. I usually drive 3 hours once a week to come give my daughter a few hours break. I try to stay over night as well but I’m so exhausted when I leave it takes me days to recover and I’ve got 8 other grandkids to help out with plus work. I’m angry at whatever’s causing this in our children, I’m angry at the government for giving crappy support, not doing enough research, using grant money for everything but the family. I read all of this and think, we need a home health program or a special program where mother’s can either take their kids or have someone come and help nanny these kids to give parents breaks. We need treatments, meds , something that actually works to help calm down these sensory overload issues so our babies can focus to learn and develop. I’m not enough help fir my daughter and I cry all the time knowing she’s so broken down with life’s demands with an autistic son who can’t communicate, who chews everything in sight, will eat Anything he finds, hair, bugs, dirt, paper…you name it. He’s non verbal, bites and has major breakdowns. On the other hand I see talent in him. He’s acrobatic, coordinated and could probably be an olympic champion one day with his jumping, running and flipping skills. He wears braces for shoes because he walks on tippy toes. I’m willing to write a grant, write senators, president, anyone but I need direction as to where to go for “real” help. We don’t need bandaids we need solutions, healing and these families need money to help with raising these children. Parents need support financially and mentally. Someone help me help y’all! What can I do?????
When it comes to receiving services, it all boils down to money. I have two adult children with autism and I had a very tough time when they were younger. Neither of them slept until they were 10 years old. My son was in diapers until he was almost 10. I had to work full time too to support the family as many services weren’t covered. I will also tell you that it is a myth that a second child is copying the other child’s behavior with autism. My daughter is our second child and she presented with many of the same characteristics as my son. She was diagnosed at 23 months. If there are developmental red flags and concerns with your granddaughter, get her assessed. Her outcome will be much better with early intervention. She should not be nonverbal at the age of two.
Families like mine are in crisis all over the world. Parents need early training to understand the behavior of their children and how to intervene. I started Autism Awareness Centre when my children were 4 and 6 years old. I knew that the more knowledge and training I had, the better their outcome would be. I educated myself to a very high level on the topic of autism and all that I have learned I have passed on to everyone through my website.
How the home environment is organized can have a big impact on disorganized behavior. https://autismawarenesscentre.com/the-low-arousal-approach-at-home/ Learn about the Low Arousal Approach to manage challenging behavior – https://autismawarenesscentre.com/what-is-the-low-arousal-approach-and-how-can-it-benefit-my-family/ Never punish a child with autism for their behavior. What they are doing is not in their control.
Figure out a sensory diet for your grandson to help him self-regulate. Meltdowns are often a result of a regulation problem. https://www.understood.org/en/learning-thinking-differences/treatments-approaches/therapies/sensory-diet-treatment-what-you-need-to-know
Education, knowledge and understanding is key. I am educated in this topic way beyond most therapists and have found understanding what to do and the meaning of what I am seeing has made for a strong outcome for my children. (I have a B. Mus degree and was a high school music teacher so came to this with no background.) They are wonderful adults who have full lives. When they were 3, they did not speak, sleep, eat properly, and had lots of meltdowns and developmental delays. There is a lot of information out there, particularly via websites like mine. No government will ever have enough money to completely support us due to our sheer numbers. The more we can do for ourselves, the better. Professionals are there to provide guidance and help us implement skills, but they can’t do all of the work for us. Parents have to be skilled enough to know how to intervene and support in difficult moments.
https://autismawarenesscentre.com/the-importance-of-play-for-children-with-asd/ , https://autismawarenesscentre.com/embedding-skill-building-activities-into-daily-routines-and-activities-for-children-with-asd/ ,https://autismawarenesscentre.com/calming-strategies-to-support-a-person-with-autism/ , https://autismawarenesscentre.com/addressing-challenging-behavior-and-asd-going-beyond-what-we-see/
I have a 4 year old autistic girl and I am at breaking point. NDIS rejected respite application that was written by many many people . I am at breaking point , today I took her to swimming and the anxiety got the better of her but as I am following the advice of the specialist I am not to get into her demands and only reward her for good behaviour. Today she did not get rewarded with a lollipop at the end of swimming as she did not follow the teachers request . I then subsequently dealt with anotherassive tantrum meltdown at the swimming centre and then at home which lasted over and hour. She destroyed her room , broke her bedroom door , broke her toys and forght for over an hour kicking the door and screaming as loud as she could . She exhausted herself after an hour’s and went to sleep . This is just one of many many tantrums . I. At breaking point my husband left last year because he couldn’t cope and was dealing with it by drinking when he wasn’t working. My 12 year old wants to leave home because she can’t dealt with being bitten and attacked by her sister. I doing what the behaviour specialist say but I can’t do it any more . I want to just ring the police and get them to take her away . Noone else will look after her and noone will give her medication to calm her down . Basically noone gives a shit . I don’t want to be one of those mothers who ends up harming their child because they loose all hope . I want help and noone will help me and all I am left with is the police taking her away . Problem is with that is then all these people who won’t help will then tell me what a shitty mother I am for giving her up . What do I do ?
Peta, you will have to change the lens on how you view your daughter’s behavior. At the moment, your behavior specialist has been suggesting you give rewards for good behavior. This implies that your daughter’s behavior is in her control which it is not. Please end the reward system for behavior as it will only cause further problems – https://autismawarenesscentre.com/a-viewpoint-on-token-economies/ The first thing you want to work on is managing anxiety. This can be done through the Low Arousal Approach – https://autismawarenesscentre.com/what-is-the-low-arousal-approach-and-how-can-it-benefit-my-family/ It took some time for your daughter to get to this point, so it will take time to get her stabilized. You can do this, but you have to understand that your daughter is not in control of how she behaves. You are also under stress and have had a stressful family event with your husband leaving. Please read the two links I have put into my response. We also have an upcoming webinar on understanding anxiety that you may find helpful – https://autismawarenesscentre.com/shop/webinar/webinar-supporting-anxiety-asd-2020/
Have a look at what meltdowns are really about. They are due to overload – https://autismawarenesscentre.com/how-the-low-arousal-approach-helps-your-child-with-autism-manage-overload/
Respite in is not helping matters, it’s not even a band aid , I am a mother of a severally autistic 12 boy and what I go through on a daily basis is crippling. The violence the crying over nothing no warnings no triggers that you can see thinking off the top of your head on a regular basis always on the fly. Not only do these things stay with you when you take that break but it dose nothing to help the problem at hand. There is no real help out there for the severely autistic just ones who can actually function. Schools can not handle it so they spend 80% of the school year at home with the mother constantly going through respite workers cause they feel your son is to violent and they are unable to complete any fun activities or putting because he throws a meltdown. Parents are forced to make tough decisions of giving there child to the state when all they did for there years and years was try and get the help that medical professionals claim to have but you see no results, medications that are said to work are so expensive parents can’t afford them or they can’t get coverage. Respite and taking a break dose not relive exhausted parents it just gets them out of the house with the same stress guilt and worry they have at home. I don’t know where they get there information but the real problems are for the ones who are so autistic they can not do daily activities are non verbal can’t fend for themselves and rely solely on the parent for everything that’s what needs to be discussed and that’s were the focus should really be but it’s not . My thoughts and love go out to the ones who live this type of struggle everyday and receive no real help for there beloved child 💔 they are missing out on everything they can not get back (YOU ONLY GET ONE LIFE)
Erica, my heart goes out to you in your difficult situation. I would suggest that you investigate the Low Arousal Approach. It has been employed with a lot of success with children like yours. Visit their website and access some of their free webinars that they have been offering every week since April – https://www.studio3.org/free-webinars
I have a 6 year old daughter with autism. My wife is an alcoholic and struggles with depression. I have been laid off due to Covid19. My wife has givin up hid in the bedroom for months now. We are in the process of a divorce and I’m the only person my daughter has. I’m so overwhelmed but am pushing forward. Today we went on 3 walks around the neighborhood stopping along the way because there are triggers all around. I love my daughter so much I will never leave her . I will push forward, help her grow and have experiences that nurture her soul. We talk and communicate in a very special way. People look at us funny but I don’t care. She was put in my life for a reason. Some days are easier than others. some days are down right impossible but WE CAN DO DIFFICULT THING!
Graham, as your daughter matures, she will develop skills and things will become easier. My 21 year old daughter now has her own techniques to manage her anxiety. She can do many things for herself without my help. The early years were very hard and so many things were new. I read a lot, attended conferences and built my own knowledge and skills to support both of my children on the spectrum. Keep educating yourself to further your own understanding of what makes you daughter tick and how you can best support her. You have been in a tough parenting situation and it sounds like you have had to do a lot of it on your own. Your dedication and unconditional love will help your daughter to flourish.
I am raising my autistic adopted son after raising his level 1ASD mother. I’m single and am drained! My only sister died three years ago and as my son’s disabilities became more pronounced, our friends stopped coming over or taking him places. It’s just the two of us and I’m touched out, emotionally drained and out of spoons. I should add that my son’s autism is caused by an ultra rare genetic disorder which also causes a host of other medical issues and intellectual disability.
Thank you for this. Struggling with my autistic son. We are on coronavirus lockdown. It’s hard, for sure.
Erika – I have been doing extensive writing on this lockdown and how it is affecting families. I have my two adult children with autism 24/7 with me now. I have a free e-book that you may find helpful called Life at Home During COVID-19 – https://autismawarenesscentre.com/shop/autism/life-at-home-during-covid-19-e-book/ . I am also writing every week on some aspect of life under COVID-19 conditions so please have a look. This week’s post was on mental health issues. https://autismawarenesscentre.com/autism-news/ I also have a free webinar on Thursday, May 7th addressing this topic of isolation at home – https://autismawarenesscentre.com/free-webinar-the-new-asd-at-home-world-10-ways-to-cope-with-changes-during-covid-19/ . Please join us.
My daughter is to be assessed for autism she has sleep problems if I can get her to school I can go to work other than that she is always with me can go out with friends at night she has violent meltdowns at least once a day I work 27 hours a week but there isn’t a week where I’m not off and it’s putting a strain financially and with my husband I don’t know what to do
Claire, when you say she has violent meltdowns at night, can you give me more details of the context? Is it just before going to bed? When the bedtime routine starts? Are there tech gadgets or a computer in her bedroom? Where do these meltdowns take place? Here is a little video about sleep – https://www.spectrumnews.org/features/whats-the-connection-between-autism-and-sleep/?utm_source=Spectrum+Newsletters&fbclid=IwAR0byi4t4H9eRqIqMYcWJxubXTXS1JhM_naSQsckV_39xnpUTkpYwNILsL8
All fine and dandy if you actually have support. Real support. We dont. Our own family ran away the moment they noticed all of our kids were exhibiting signs of autism. Grandparents ran away, parents ran away, our siblings and their spouses ran away, all of them ran away. Because they dont want the headache of dealing with them. They dont want to be asked to help us watch them for a few hours so we can get some time away just to think or have just some time without screaming or meltdowns or the insanity.
Baby sitters or nannies just quit because they dont want to deal with it. We live in Ontario Canada and the autism services have been thrown into a mess and now we cant get any external support because everything has been wait-listed or put on hold or now cost tons of money out of pocket. Doctors and medical professionals simply dont give a shit and arent of any help. If you think having one autistic child is bad enough, try having multiple (who were all normal then all of a sudden became autistic at literally the exact same time while being different ages). If you think you’re exhausted with just one, come see what our life is like. We literally go several days without sleep every 1 to 2 weeks. Our memory and mental capacity has been degraded, sometimes I cant even remember why I got up to do something or remember what a certain word means. We’re so exhausted that even simply getting behind the wheel of our car is bad idea. Every day I wish I can just sleep normally, without interruptions and wake up on my own feeling refreshed and rested instead up being woken up by some screaming or meltdown or some insane behaviour.
I am exhausted like everyone else here!! Is it normal that sometimes I just dwell on my regrets? Sometimes I just absolutely wish I had decided on not having any kids? I only have one- an eight year old son who recently finally got diagnosed with Autism level one. I’m a single parent too, its been that way since he was only 3 months old. My ex would rather sleep around and get arrested than care to know how my child is doing. Although, I heard he secretly stalks us. (Thats about to change when we move.) Anyway, I also dont get any help only except from my mom and even that is rare. She’d rather work a ton of hours than deal with my child. I have a sister who works with special ed kids like my son, but doesnt want to ever babysit mine. She says she cant handle him?! Like what?! I get calls and complaints from the school about his aggression. The only award hes ever gotten is the “Most improved” award. How embarrassing that is. We dont participate in any after school activities because he either runs off and ends up crying. Also, its very hard to do anything with him like go out to eat, movies or anything like that without him crying for no good reason. His OCD is probably the worst of it all. Most people just think he’s spoiled and that a good spanking will fix it all. Im tired of the unwanted advice especially from people that are not even parents to begin with. Theres no hope when you dont even have the money. All I hear is, “Oh we dont have funds for that.” The only thing now that concerns me is his future. Where do I go from here? I have a heart condition and I dont know whats going to happen with him if he’ll need lifetime care..
I am happy to see you use the term ‘parental’ instead of the usual ‘mom’. It frustrates me as a dad of an autistic child doing research and everything seems to imply that only moms work hard for their autistic child. Rant aside, I like this article and it would be nice to see more suggestions other than having a good support structure. Sometimes having a good support structure ins’t always in the cards.
Ken, my husband has had many sleepless nights too. Both of our children had disordered sleep for many years as well as a host of other problems. You really do need to find some sort of relief or outside support whether it be respite, a hired caregiver – something. If you never develop anything for yourself, you burn out. I took up figure skating in my 40’s and that has saved me. I have two on the spectrum both with more complex needs and I work full time. Things have never been easy for me, but having the skating and reading books seems to recharge me. I also get up earlier than everyone else and go to bed later just to have that one or two hours to myself.
Wow there ate so many of us parents with asd children I truly thought I was alone …. My little boy is 7 and oh my ,I noticed a change in him when he was about 14 months when he stared walking he would run . So for his safety me and my husband put him on reigns’ until he was 4 the was told by a social worker to take them off him I explained that they were there for safety,se he had a unhealthy obsession he thought he was the hulk and he could destroy a car or bus if it hit him …. At 2 yrs he went to flying start and when I’d leave him he would hit other children ,bite ,lock them in cupboards scram them and spit and kick i would pick him up and he would be fine … Then this was everyday for the next year to get ready for nursery school he would come home with a behaviour book that’s they had wrote to let me know what type of day he had .then nursery he was the same but had a challenge to try and get him into school as he can’t adapt to change so the school holidays are a killer for me…. I have begged for help since a toddler but ot gets brushed off kept having its terrible twos he’ll grow out of it but it kept getting worse . Then before the summer he wouldn’t go to school told us what days he was going take him to school couldn’t get him through the school gates he’d Run home we live 20 mins away from school with 3 busy roads and he’d be gone this continued we had the police endless of times because of him running from school ,till summer holidays. Then September new class again he went 1st September 7th then nothing I would take him to school he would clam up shake complain his stomach was hurting and then would be sick I took him the doctors they put it down to anxiety and panic attacks he went then November for a few times all was good he had calmed and was happy going things was looking up (so I thought) only instead of running from school now he’d be naughty throw tables throw bricks at teachers asking are they scared then the final straw came he punched his teacher was excluded for a week he was happy he was home with me school panel pulled strings to get him a lovely school for children with thos behaviour and he attacked his teachers on the 1st day again was excluded. So now he goes 1 hour a day when he want’s to go he has recently seen the children psychologist in school who wants him assessed for ADHD asd add neurodevelopmental and sad the season dissorder it’s heart-breaking as mum to watch a child suffer the last two weekends he has had a breakdown thinks no one loves him because he’s naughty tried stabbing himself told us he should die because he can’t cope , but see like most people here he sleeps well and eats but it’s all sugary with him as he is so busy and can’t sit down he needs the energy he has night terrors. He shouts and swears in his sleep he needs help but the process for children is far to long and I am so exhausted I hardly sleep with worry over what next … We don’t have a break we have out 24 7 the last time we went out was my wedding day august 2005 and this is because he throws a wobbly if we try and leave the house and my 9 year old suffers because we not gone out there is no one to have him he won’t stay with anyone and people can’t cope with him . Sorry for such a long post i just someone who understands the struggles i am going through .
Our autism community is huge world-wide. There are lots of support groups, blogs etc. that one can join, read and comment on in order to not feel so alone and isolated.
My daughter is 22. She is both developmentally disabled and autistic. It is highly unlikely that She will never be able to live on her own. I am 59. I’m beyond tired. I also had my first child at 17 and one every nine years. Francie doesn’t have many issues with sleeping or a special diet but I have to cook for her, help her with all hygiene – which is a battle. Thank you for your research and article on this subject. I would love to see more solutions than the usual get support etc. thank you
I am in the same boat as you with two on the spectrum, both intellectually disabled and on special diets. I also work full time to be able to support them. I’m a little bit younger than you. I find exercise really helps me regulate my stress and helps me sleep better at night. I am constantly worried what will happen to my children when I can no longer care for them. I have written quite a bit on different ideas on how to help our adult children. It is becoming more of a focus for me. My two are 19 and 22.
This is a good read. I have two autistic boys and am myself recovering from a grade 4 brain tumour. I am now classed a survivor. Each day is a mahosivery struggle and sometimes I am unclear whether my body is tired from the boys consuming and constant behaviours or whether my brain is just reacting to being shattered
My daughter is 5 and I am having a real hard time getting her to use to potty for number 2. With everyone around me which is plenty they are all no support to what I go through, instead they are all judges. Even the schools and doctors and people who are complete strangers still cast judgement, without knowing all you do to try. It’s depressing. I can’t take much more of it not alone anyway. Another problem I am facing is her going to school, I feel like she is becoming more violent and using more hand flapping than she has ever done ever. She use to show self harm with head hitting on the floor, but working with her was able to get her to stop. She talks better when she is home vs. When she is goes to school. Being others is good but I am not sure if it is beneficial if she is coming home with more negative feedback from it rather then positive. She has no issues playing with others and would rather do so, only thing is sharing which is an issue with any kid her age. Sorry I had to vent. There is plenty more I would love to express.
I agree with many comments on here about what time and what money? My hope is fading. We did great with ABA for my soon to be 6 yo daughter. Then school had horrid issues of aggression. It got bad so we started meds. School only just gave her a full time aid but they kept allowing her to act out, be aggressive and get out of class that I’m not sure they can unravel their mess. She injures staff and students, this time a boy’s parents are concerned for her staying in the regular class if she is going to keep injuring people and causing anxiety to the other children… I feel for them so bad and want to apologize. Ultimately I want my daughter to get help. The meds made her worse and we’ve been threatened with eviction if there are anymore complaints about her behaviors. We don’t have money to move and don’t want to be in an apartment situation only to have the same threats occur. We have to run and hide with her in the car when she doesn’t calm down so she doesn’t disturb anyone. We have no place to go. My mom is the only one that tries to give her respite so we can have time, but ever since medication she is no longer able to help as she use to. My daughter has been hospitalized twice in the past year. I’m terrified to bring her back if she does freak out because the ER was not friendly the second time around. The in patient doesn’t do much except change meds around then they want to release her after 10-14 days with just having med adjustments a few days before the release. A lot of it is insurance not wanting to cover longer stays. She’s too aggressive for CBAT. We put in for a lottery to get help but didn’t get it this year. We’re told she’s too aggressive for respite. We get DCF called on us when she freaks out cause she will throw herself down, harm people, animals, scream, swear or even harm herself so people think we’re beating her. She has even said we hurt her. I asked her why she thinks that and she said because we don’t allow her to hurt people or do dangerous things and she wants to do whatever she wants. We don’t get invited places anymore. People have threatened that since we don’t discipline our child, they will. We also found she has a microduplication and deletion which is relative to her ASD and ADHD diagnosis. I think I’m in mourning due to all of the stress. All I want is to help my little girl. I hate feeling so scared that no matter what I do or keep trying to do for her that I’m going to lose her. It is such an awful feeling because while sending her to a place better equipped to help her could very well make a positive impact, she’s still my kid and I feel as though I should be able to be magical and do everything as her parent. And where do I send her because insurance, wait lists, lack of providers accepting new patients is a terrible issue. It’s so conflicting. I know there needs to be balance but how? How do you get there with no money and no help? To be told your child is too much even from professionals is damn hurtful.
My child with HFA is 31. I am beyond fatigue. I have been the single parent without any help from the family or government. I keep thinking it will get better but it doesn’t… it gets worse. I have no energy or motivation to do anything anymore. I have done all the self help for me stuff… I am tired of that as well. I think tomorrow will be better but it never is. He just totaled my 16,000 car that I just paid off. I am empty, heartbroken, and lifeless. It DOESN’T get better. I know that for a fact.
Our high functioning individuals frequently slip through the cracks as they often don’t qualify for any supports or funding. Many of us continue to fight all over the world to try and get this changed. I know it’s exhausting. I worry constantly about the future for my two young adults. I’ve cracked all of my teeth in the last year from excessive grinding. I just try and keep searching, doing research and creating things from scratch for my children.
My daughter is 11 and I feel like I’m having a nervous breakdown everyday it just gets worst no nannies wanna be around my ex husband hits her when she’s barely ever with him but I need to rest sometimes . Or not. I honestly feel like I have no life anymore. I was always so happy but lately I feel suicidal everyday. And my extended family could be helping but nobody wants us around it’s like they are ashamed of her. I’m not. I’m just exhausted emotionally and physically. I’m hoping for the best but I don’t think it’s getting better and the end is near for me . I hope someone takes good care of her I love her more then anything or anyone but this life will kill me before I try to attempt anything.
hi Karla it will get better eventually I have to autistic kids a 13 year old and A3 year old my three-year-old is a lot of work but I don’t give up I keep going everyday and he fought a fight he was a premature baby so I’m going to make sure I’m here to fight this fight with him to the end but I will be praying for you and baby girl she needs you the most please don’t give up on her you are her only hope
I’m writing to let you know that you are not alone! I fight with myself everyday on this. I have an 11 year old daughter recently diagnosed with moderate to severe autism and fragile X possibly. As her mother I’ve known since she was about three. Dr. Take forever. I’m not with her dad any longer but we share the home because of financial difficulties and Dr think it would be best for Rosie to not change anything. We get along for the same of her but if I could I would be gone in an instant and I fear him as does she. I have lost many jobs because of her illness. I stay at home with her but everyday it’s a new Dr. Problems at school. Just getting her to school is something I worry about every night. She has missed more days than she’s gone. She is bigger than me and becoming more violent everyday. But when she is in a good mood, I hold on as long as I can. She would be the love of everyone during these times. Cares so much about others and cries at commercials about animals. Wears her heart on her sleeve. I cherish these times like nothing. Day after day however it seems to be getting less and less of those days. Right now I hang on to as many memories as I can just to get thru the next day. She doesn’t sleep, doesn’t have any friends and is always telling me she wishes she was dead. Says that God made a mistake with her and it breaks my heart. But you and your daughter… You need her just as much as she needs you. Don’t take that away from her along with all the other negative life has given her… Be the one positive thing in her life she knows will always be there for her. I hope you have better days and you can get a hold of me any time.
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.
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.
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.
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.
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.
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.
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.
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.
You have hit the nail on the head
Exactly right, written by someone who really knows. Thank you.
True – there is no extra money or time! Agree 100%
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?
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.
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.
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?
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.
Crystal,
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!!!!!
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?
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.
Hi. “SSI” allows you, as the disabled child’s payee, to
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.
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.
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.
I don’t need more sleep I need answers, how do i Make this better, what agency or charity will actually help.
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.
It becomes a way of life and you get used to it. For me, these feelings are normal and I don’t know anything else.
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.
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
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.
Very true. I am always exhausted
We live in Kent in England
Shelley, I would contact the NAS Kent Service – http://www.autism.org.uk/services/england/kent/contact-us.aspx They will be able to direct you to some parent support groups in the Kent Area.
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
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!
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.