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Autism Moms Have Stress Similar To Combat Soldiers

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Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.

Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.

What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.

Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.

“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”

In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.

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Comments (242 Responses)

  1. Jackie says:

    So, what are the long term physiological effects of combat soldiers, and more importantly, what works for them to lessen the negative effects of long term chronic stress?

    Based on my personal experience, the changes in blood glucose levels could merely be from the need to have instant energy, and reaching for sugary stuff becomes more instinctive than rational. Seriously, count how many bakeries and donut shops there are in our neighborhoods and notice that they can even be more affordable, in terms of money and time, than maintaining healthy eating habits. You have to eat the daily recommended amount of fruits and veggies to keep up with the quick energy you get from refined sugars. Consciously cutting back on refined sugars should help our blood glucose regulation.

    Immunological and mental functions… what works for the combat soldiers?
    This type of study may help both combat soldiers and mamas (parents) of children with special needs. Please keep us informed.

  2. Letricia says:

    Its a different life…

  3. Mike grigg says:

    Before Autism was was really know about and as aboy I walked my sister to school she has many behaviours like my son my sister bernadettee who died when she was 13 behaviours were much the same as david , my mother she suffered alot stress and even use to self abuse us and he self .
    One the differculties we had we did have the information about Autism whe had information about about Epilepsy and my mother mainstreamed with out a understanding of discrimination . As I grew up my son had epilepsy but not the understanding of autism . As I grew older I learnt about Autism and develop strategies but then in the mainstreams friends made it worse as they did understand autism I have diabetes and Arthrrsis in my neck because my hear been pulled but one the worst stress is people do not believe you about melts or understand about inclusion some autistic people are vulnerable and when you advocate for you child you not believed by other memebers of the community and that creates a lot hurt a lot . In fact no one really under stand we grevie a lot as parents
    Im from new zealand really but i want to participate so I put albama i love go to new york

  4. Kate says:

    Can someone please give this article to my boss?

  5. Autim Mom says:

    It’s not just the moms… the Dad’s are affected as well.

  6. Chris says:

    I was fortunate not to have to be the main breadwinner and to have an extremely supportive and inclusive extended family; but still only held one job successfully, due largely to having a boss who was cooperative and allowed flex time because she was the legal guardian of a brother who had Downs and really “got” it. It gave me self confidence and hope and self esteem but was not replicated anywhere since ; so the stress and guilt of having be off or distracted from employment tasks to do medical appointments and transportation and scheduling and diet just takes a toll on your own health and mental functioning…

  7. Leigh says:

    To all of you combat veterans….this article is not suggesting that living with autism is at all a similar experience to watching your best friend get shot and die in your arms. It is suggesting the stress levels are similar. Again NOT the experience, the stress level….that is something that is measurable….as the article said “They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat”

    They could have easily said SUCH AS police officers, or firefighters….then those folks would have been here saying ‘no way’

    Maybe they would have been better to say we suffer from battle fatigue…which comes from a constant high level of stress.

    I have two profoundly autistic children, who are adults now, but the stress level has been constant for 25 years…from constantly being on alert for a 2 year old who would be gone in the blink of an eye, and could run like the wind….straight into traffic, to a 20 year old who might reach for a woman’s breast just because it looked fascinating. That’s certainly not watching your buddy get his brains blown out, but the constant, unrelenting stress level can be equally high. We may not commit suicide, but look at the divorce rate amongst parents of special needs kids, and when it comes down to it, some folks just handle stress better than others.

    I don’t think anyone, including the author of the article, is trying to negate your combat experience, they’re just trying to give an example of when stress levels have been tested, parents of young adults with autism and behavior problems, and combat soldiers show test results at the same level That’s science, not a test of who’s had the most traumatic experience.

  8. Juli Chandler says:

    The Article you post about Moms of Autistic children having the same stress as Combat Veterans!!! Please send the People who did this Research over to Iraq & Afghanistan on the Front Lines & let them be there for about 1 month & lets Truly see how the 2 compare then!!! Whoever wrote this article Must be on some Crazy kind of Medications!!! They do not know anything about the Life of a Combat Veteran!!!

  9. tiredmama says:

    @Amber Robinson I think the article and research is trying to explain the stress mom and what it is like raising a child with autism. We don’t get leave, time-off, vacation, PTO, so the stress is much different.

  10. Kerri says:

    It makes me extremely angry to here the post of the person who “downs” the author of this article, simply comparing and relating the stress levels of parents with children of autism to combat families. That person NEEDS AND MUST get a grip!! I can guarantee and bet my life that this person has no children on the autism spectrum, let alone one that is severely autistic since being diagnosed at the early age of 2 yrs such as my dear boy. He is now 3.5 yrs; cannot speak a single work, cannot communicate in any way, no motor or fine motor skills whatsoever, gets fed everymeal consisting ONLY of puréed baby food, due to severe texture and sensory issues, abnormal sleeping patterns, etc. This disorder does not only affect my 3 yr old, it affects my 9 yr

  11. Lisa says:

    Yes, and in the case of Aspergers – on the spectrum, the developmental delay (and it’s symptoms) are highly genetic, which means she may be married to an adult version of the child, which can impact her ability to think straight. Her husband may be “functional” at he work place, but is many times exacting, demanding, highly agitated over most anything, unavailable to co-parent, and is unable to help with household tasks… so she is running a behaviorally disturbed home for husband and children. Just say’n.

  12. Lisa says:

    In addition, we have to say out loud here that the reason a writer would compare combat soldiers stress to stress of a Mom of an Autistic child is because our society so minimizes real stress that is not war. It’s an attempt to connect the dots between high levels of demand, stress and lack of sleep to what our society considers legit PTSD – that belonging to war survivors only. Such a bunch of bunk. I’m a PTSD therapist. Big T TRAUMA and little t trauma can have identical symptoms, and shut ones chance at living life down in the very same way. It’s about validating mothers of autistic kids, not minimizing soldiers, I imagine.

  13. Anne says:

    Anyone who has been the primary caregiver of someone on the Autism Spectrum knows they are stressed by daily childcare activities beyond what most parents experience. Add to that the disruption of work, sleep, family and outside relationships, and the lack of down-time, understanding by others, and ability to access meaningful assistance from schools, medical providers, etc., there is no doubt that a toll is taken on the body, mind and spirit of the primary caregiver as well as other family members. The general population needs understands that with every 8 to 10 children (depending on the study) diagnosed as being on the Autism spectrum, this is a condition that will have long-term effects on everything from education to the economy over the next several decades. My question is: This article was written in 2009. Why is it, that 4 1/2 years later, it is still being debated?

  14. Suzanne says:

    Am I the only mom that loves autism ? I love that my son sees the world in a different way and I get to experience it with him. I wouldn’t trade his quirky and unique personality for all the gold in casterly rock. Every day I learn something from him or one of his classmates in his autism centered special needs class. And before someone starts the “my kid is more autistic than your kid” pity contest, My son is in the very high classification with classic autism — not spectrum disorder, but what the DSM IV considered autism twenty years ago—and we always say that we aren’t suffering from autism , we’re having a great time with autism. I think everyone can agree that parenting a special needs child is sometimes very hard, but so is parenting an average child . Maybe we should all stop focusing on the “suffering” with the hard part and start giving thanks for all the great parts. I truly feel blessed to be on the wonderful journey with my son and I would NEVER let someone say that the “burden” of caring for him is like going to war and shooting men, women, and children before they shot me.

  15. Sharon says:

    I would assume that your study you did asked a number of controlled questions that gave you the answers you were looking for. Are mothers of children with autism tired? Stressed out, unable to handle it all? You bet!
    Those of us with an adult child with severe behavioral issues drain us mentally and physically everyday . There is not enough help. I personally have more help than a lot of people, and I am still physically and emotionally drained daily. I also have a child that is extremely difficult.
    Going to war, combat ….it may be similar in many ways.
    Most of us moms have not be to war, but some of us imagine this is what it is like sometimes.
    Please let us know the results of how you can help us handle the long term stress.

  16. Ted says:

    I’m a single dad with 1 child with ASD and 2 others with out. Been on our own for 5+ years. I was actually looking for data of fathers and there is none apparently. You have my email address and I’d appreciate it if you’d point me towards what I’m looking for… If it exist. If not, wow am I that rare?

  17. Toni-Anne Carullli says:

    Being a Mom of a 20 year old Autistic Son, who has had to deal with The Board of Education semi annual, and annual meetings, Department of Transportation for Bussing to school, Phycologists, phycologists, psychiatrist, neurologist, medications and Primary Doctors, Social Security, Having to obtain Guardianship, Setting up after school care, Agency’s, Medicaid, Medicaid Waiver, Now looking into Day Hab, Work Programs and Residential Housing all of this with no help while trying to juggle my job which has been a major challenge due to days that I need to take off . It is a wonder I haven’t gone off the deep end yet!! Key word is YET!!!! Although I do remember having some small nervous breakdowns along the way. I would agree this is much like Stress similar to combat, not one agency makes this easy requesting the same documentation over and over and over. As if he is going to wake up tomorrow and not be Autistic anymore!!! If a parent has an Autistic Child they (the parent) should also be considered disabled !!! Can someone also please show this to my boss!!!!!

  18. Cherri D says:

    I have a 26 yo son w autism. Low functioning but very verbal and very aggressive!! When he lived at home I was on constant guard. Sometimes he would attack me and I would fear for my life. I never slept a whole night in 24 years. He is now living in a nice group home nearby and comes home one day a week. On those visits that I see the behavior start my body reacts. And I can feel the adrenalin rise.
    Yes a healthy diet and especially some regular exercise does help. But many ppl w autistic children don’t have the time, childcare, or money. I’ve lived it.
    And I can see where those of you who have been in combat can be upset. But these findings are based on hormone/chemical levels. And fyi PTSD is not just for soldiers.

  19. jennifer aaron says:

    I agree with this article. I am one of those mothers that is seeking help. Especially in the summer. i am currently a stay home mother and will be looking for work. This season i checked for summer camps that work with SPECIAL NEEDS CHILDREN. I could only find camps that were high in pricing or did not have ample service for the spectrum so i could not find help….. We need more services to train and assist special needs kids.

    I do go to support meetings but we would love to have meetings where we can bring our children and they have a play area and space where the would be safe. For now we do the best we can in managing our time, parenting and fitting in sleep when all possible.

    jenn AARON

  20. Leticia says:

    A very good friend of mine who embarked on this journey 38yrs ago told me a year ago that she heard Dr. Oz make mention of the same comparison between parents of children with autism and soldiers in combat. It was only then the proverbial light bulb went on as to why I was exhausted all the time!. As I am typing this email I am sitting in an apartment in Warsaw, Poland yes Poland for neurosensory integration therapy for my high functioning ASD daughter who is 6yrs. I personally don’t get why a soldier would get bent out of shape about this study. What exactly does it take from them? NOTHING! The things that we deal with are enormous and until I had a child on the spectrum I was completely clueless about autism and all that it entails. Some of us are doing this alone without the help of largely fathers and at times mothers whiles working full time. It is amazing that we have not all lost our minds. For the parent who said for someone else to show this to her boss I say advocate for yourself the same way you advocate for your child; FMLA.

  21. Lindsay says:

    The title of this article is very unfortunate and while I’m sure the author has enjoy the sensationalism it has brought them, they really should have chose differently as it is very tasteless. A woman living in America with an autistic child has NOTHING is common with a combat soldier. But hey, it worked! I sure as hell would never had read this article if I hadn’t been so offended.

  22. singlemomof2 says:

    Being exploited at work making about 22k doing of job of 3 people. Dealing with SSI income limits and elimination of temporary up and downs of taking away disability benefits for my child. Yeah getting home from work to repair what my son has broken in material things plus dealing constantly with court fights regarding child support. Laying down in bed thinking how I am going to make it with out ssi? For food? And feeling that my head is going to exploit like a granite every night. Of yeah I feel like a soldier…in constant combat to survive what society don’t understand…

  23. Grace says:

    I’m so glad for this study. I wished I had more flexibility at my job like working from home or time off. I’m so stressed and feel sick a lot of the time. Thinking about my child’s needs and fighting the school district or Regional Centers is a full time job. Family Medical Leave Act is not enough. I need to take time off for myself and my child. FMLA provides for 12 weeks if time off per year. But employers make it so difficult to take with threats of firing you that it’s just not worth it. There needs to be more protections for parents and caregivers of individuals with a disability.

  24. Lynda says:

    I am the mother of a 33yr old autistic son. I also have two other grown sons. My autistic son lives with me and his Father who other than financially supporting us dumped all the child raising on me. My son is high functioning and has had several jobs, but lost them do to no fault on his part. He worked at a Sears Hardware store for 8yrs until it closed due to the failing economy. That was 4yrs ago. Since then he has been home with me. I have him in a few activities but he has no structure to his life. Have worked with the DVR to find him employment but one year since they (DVR) hired someone at an agency to find him work nothing! He can be such a good young man but if I cross him in some way he attacks me. This happens on a daily basis. He terrorizes me for hours. He hasn’t hit me but pushes me or blocks me from getting away from him. The names he calls me and the threats he makes to me are totally disgusting. I wish he would kill me that is the only way I will be free. My heart goes out to him because he has this horrible disorder. I have dedicated my life to taking care of his needs. My husband doesn’t do a thing to help me or stop him during a meltdown. I have no one to help me. Right now I am in a terrible depression. I pray every night I do not wake up the next morning. I just wonder how many mothers are going through this. I know I can’t be the only one. I don’t think anyone can understand what a soldier feels during a battle. I do know it changes them. No one can understand what this has done to me and my family. There is no me anymore. I hope someday they find a cure for Autism. I just hope I can stay strong and not do what I think about doing everyday. I am not sure anymore if I believe in God, but how much worse could Hell be, I think I am already there. Lynda

  25. Ruthie says:

    To Lynda, who posted Aug 16–I hear your desperation. Please call your son’s case manager and explain your situation and demand an emergency placement. You need. Break and it is ok to ask for help. I work in group homes and we are staffed 2/3 and we get tired!!! I can’t imagine 24/7. Often we get placements where someone has been acting out badly at home and they settle in very well. The stimulation of scheduled activities, a variety of staff, and roommates makes for an interesting day most if the time. For aggressive or inappropriate behaviors, we follow a support plan that usually calms the client and gives choices. Many prayers for you and your son

  26. Wellieg says:

    Research has pointed out so many things about autism and parents but it does not solve anything. Those of us living the autism nightmare know that its not about all these publications which we don’t even have time to read, it is the “what do we do about it?” what support should we give to families? how do we bring relief to families that are struggling with multiple children diagnosed with autism. I don’t care how many research articles you write, tell me how to balance my life and if you don’t know how, then please, don’t tell me what I already know!

  27. anotherAutismMom says:

    One parent suggested she was the only one who loved Autism and the awesome side of it, no, me too!! I do not, however, love trying to support my family on next to nothing as I had to leave my professional job to care for my special needs children. They need parents and our TIME, doing things for and with them, teaching them how to function in the world and they need a lot of other expensive things, too. There is no happy medium. We can’t dump the raising of our children on a specialized baby-sitter and spend every waking moment working to try and earn enough to pay them to parent my kids. I nearly killed myself working those hours and had to have a wake up call from my doctor and my husband still keeps those hours to no avail. We have no extended family to help. It’s just the two of us, a DAV husband whom the VA doesn’t help, and we are struggling to do the best we can, and, no, public assistance isn’t there for us. If anyone dares to suggest it is there for just such “extreme instances”, I DARE them to apply and learn the harsh truth about the American “safety net”; we learned that it doesn’t exist. Let’s talk PTSD when the “little t” trauma revolves around choosing which child we will feed properly that day because of their severe sensory issues with food and we can’t afford to buy both. When a bunch of celery has to count as vegetables for the week for the family because the school is too far away to walk and transportation to work, schools, and therapies costs a third of your income. We love the awesome parts of Autism, but without financial stability, which so many families lose like we did, this becomes a burden financially and thereby increases stress and worry exponentially. It is never a burden of the heart, never, but those who haven’t faced it, cannot possibly understand how the produce section of the grocery store can feel like the untouchable Garden of Eden and bring you to tears for your children and every child living in poverty around the country and around the globe. That’s when PTSD meets you dead on at the grocery store, mommies. I’m not being critical of anyone’s experience. I’m trying to be the voice of reality. All parents of children with special needs want… is a little patience and a little understanding. We really are doing the best we can most of the time. If you think we aren’t? Offer a hand chasing our kid that ran away in the parking lot or a compassionate handshake or a hug instead of ridicule when you almost run over them.

  28. DAVID says:

    I have been raising 2 children with disabilities 1 more then the other, one of which is Autistic, i have also been a vet, i dont think the heros of our country are getting what this is saying so, being a father not a mother i will do my best to help out here. My son is a beautiful child but, he cannot speak, he cannot pull from a pecs book his broken heart, his fears his emotions, thus its very emotional to watch because this is not a friend or neighbor it is your child! I want our soldiers to understand i do not think this was written on who gets the blunt the parent or the soldier, but i can tell you this as a human being my son will be with me until i leave this world this may go on in my life for the next 30 years thats a long time to watch your child unsure of a world, and the pain hits you in places you never thought you could endure pain, as soldiers i think you for what you give and pray peace for what you see each day and thank you for the freedom which you so do without hesitation. pain is pain and love is love, nothing here to be weighed.

  29. Smitty says:

    What about fathers of chdren with disabilities? I spend way more time taking care of my mentally handicapped autistic son than his mother. This article should also address fathers, yes some if us are the main caregivers to their children!!!

  30. Stuart Nachbar says:

    Wow, as the father and primary caregiver of an ASD son, I know the stresses. They stink. As for the Combat Veterans, this is not a contest, and nothing compares with serving our country. The tests are showing that the effects on the body (measurable levels) are the same. Not the experience or the reality of the situation. Come home soon and be safe.

  31. mary says:

    I am the mother of an autistic child. The stress studies are correct

  32. Suzanne says:

    Has there been any more studies related to stress in caregivers? What was the hormone being tested? Are other hormone levels also indicating stress being studied? Are there any long term studies of either soldiers or caregivers relating the hormone deficits to acual outcome in regard to illness, disability of the parent or soldier later in life or premature death.
    Please catch us up since this was done in 2009.

  33. Ni says:

    I agree with your research. I am always stressed. It would be wonderful to have support. Unfortunately a nice pat on the shoulder and a “there, there, you are a good mom,” does little to help us. Respite is a little help, but with the low funding, small ampunt of time given, high hourly charges, and don’t forget guilt ovet wanting a break, it is if very little help. No ine else can understand my child as much as me. There is more guilt. When i am happy for the success of my other child, i sad for my hild who does not connect with others, is always blamed for issues at school, ( whether he actually did it or not). You see, other kids know how to get him started, to blow up and lose his cool. Then the teachers will think it was all him, because he is the emotional one. Anger is the one he does know how to express. I need esucation. Not talk therapy, not once a week sessions with instructions, but someone to help in school. He is smart. He knows so much. He qualifies for special ed. He has an iep. He does not get behavior therapy at school. Insurance will not pay for our behavioral therapist to come to school and help the teachers and students, or him. The teachers will not be paid to come to our therapy. That is the disconnect. He is doing better at home. We know how not to push his buttons. People say homeschool him. That is tha last thing he needs. He has to learn to connect the dota socially. He can not do that at home. If we want to help these kids, have them grow up and be a productive part of society, we have to connect healthcarw to the place they spend most of their waking hours. School. Schools are only required to teach subjects and grt passing grades. If kids pass, and get by, they skate through uncared for

  34. Rosie says:

    The stress of keeping it together while caring for a child that throws objects at you while trying to cook, nurse a baby, shower, brush your teeth, etc is what I would call a battle in and of itself. Combat with your own demons. Being therapeutic while sleep deprived because of the worries is a battle. It was good to read this. I’d rather work my ER job during a crazy hectic shift, than handle my kid some days. It is stressful indeed.

  35. cherie says:

    I would have to agree, with a 15 year old with Autism My work schedule has been modified several times as single mom me and my employer worked out workin 10 hr sift Friday – Monday which leaves me with more time to support her during the week.

  36. alison senna alonso says:

    okay, when you go thru your house and measure your child’s growth based on the blood on the wall because of his headbanging…come and talk to me..you want stress..talk to the idiots at the state that r supposed to help with monies. yeah, they spend all their time yapping about policy and time sheets and money, while they make a decision about my son’s “immediate care” OVER THE PHONE, BECAUSE OF MONEY, this just reiterates my point over people being in charge that should not be in charge of anything. since when have nurses been able to diagnose anything over the fone.
    i don’t know what the long term effects of combat soldiers are, but i can say some of the long term effects of parents dealing with the govt, state, family, and themselves because we ALWAYS want to be better is disastrous…GOD BLESS THE TROUPS/AND FAMILIES

  37. senna says:

    my son is 22 years old…has severe self injurious behaviours and has been “treated” at johns Hopkins.
    watching a child pull their hair out, beat themselves sensless and bash their face and ears to the point that his face is dismorphic is more than any human should bear. I love him to death and that might be the death of me. he can be violent and bites and pulls hair. i’m just hoping when I die, I get a seat near the orchestra and the champage fountain. I will pray for all the parents and the soldiers who suffer from ptsd. god bless us all

  38. Jacqueline from America says:

    Lindsey that posted in July of 2014, Im offended that your offended.
    PTSD is not just your problem or soldiers! for you to feel that way tells me you actually have no idea of what my American life is with my adult autistic son. perhaps you have only seen a few examples of the effects of an autistic adolescent or adult? who have you been around to see and live autism? I’ve been hospitalized in the psychiatric hospital at least 5 times. Im still on meds for my panic attacks. I see my psychiatrist every 3 months. There are ‘triggers’ all the time that brings out the PTS. you must be bitter. guess what? i get bitter and frustrated being around mom’s who have been able to ‘fix’ or to help improve their own autistic child. the PTS comes out in my dreams even! Your personal experiences are yours but mine our my own too! I do suffer.
    thanks and bye

  39. Tami says:

    I took my daughter in to be tested for Autism and was told she has a couple things in several categories but they refuse to diagnose her as such because she is to social. They instead said she has Op-positional Defiance Disorder. I dont know what the difference is but every day is a struggle. She screams and kicks walls to the point my neighbors call the police. I am exhausted all the time. I miss work a min of once a week to care for her. I am a single mom. I lose employment due to caring for my child. My friends and family refuse to help because she is so hard to handle so it is very rare for me to have spare time or any time to have adult relationships at all. I rarely see a friend. Any time that I have to have adult time is either via internet or phone. I am not complaining by any means just saying this article is right on, parents with hard to handle kids or special needs kids do not have a life and they consistently lose their jobs. It leads to evictions from our homes and homelessness. It would be wonderful to have some help from time to time. I havent worked in almost 6 months due to losing my job to care for my child. If not for a good friend moving in with me just so I would have a roof I would be homeless for the 2nd time in less than 2 years. I cant buy anything my kids need because I cant hold a job. There has to be some relief somewhere. There has to be an employer that is willing to work with people that have children with special needs. Counseling only helps parents a little. They always say the same thing….Try this or that which you have tried a million times. They tell you to ask family for help….family doesnt help. It is hard and if we can find a way to help people they will be the most appreciative group you will ever know.

  40. D and L says:

    My wife and I are the parents of FIVE autistic boys. Their range on the spectrum varies –

    My 14 year old is fully verbal, but has sensory and social issues as well as intellectual challenges. He MAY be able to function on his own, but WITH assistance.

    My 13 year old is in the regular stream in school, but has emotional management issues, is very compulsive/obsessive, and has a very low frustration tolerance level.

    My 11 year old is also in the regular school stream. But he is VERY hyperactive, has a very scattered attention span, and has issues with executive functions.

    My 7 year old presents the most challenge by far. His reasoning skills are VERY impaired, he can be violent, and has very little impulse control. He will never be able to function on his own without community assistance.

    My 5 year old has extremely low impulse control. He would run in front of a car just to see what it would be like to be hit by one. He has jumped out of windows, and left the house in the middle of the night. He has tried to put objects in our gas fireplace to see what would happen if they burn.

    My wife and I have been married for 15 years. Other than attending a family wedding for one weekend, we have had NO time to go on a vacation TOGETHER. Other than an occasional respite worker, we have next to no family to rely on that can help take the load off so that we can take the vacation that we deserve. The ones with their hearts in the right place cannot be relied on, because they would be instantly and massively overwhelmed by what we deal with on a minute-by-minute basis. So other than the rare stress-filled family vacations we take, we each go on separate vacations because we both need some time to recharge, but that only contributes to the notion that we are continuing to move apart maritally .

    We CONSTANTLY have to endure the judgement of others for having the temerity and the nerve to have the large family we’ve always wanted, as if we could have predicted or planned or chosen to be overwhelmed by autism. We face constant criticism for our children’s autism related behaviors. We cannot go to regular family functions, attend community events, or participate in other daily activities that everyone takes for granted. Our social life is totally sporadic. We have been so stressed out that my wife has had to take time off work because she has been utterly overwhelmed by what goes on in our life. I have previously been off work due to me being overwhelmed as well, however, had to return to work because of the financial implications of having both of us off work. In a word, we don’t have the luxury of both of us being simultaneously overwhelmed and burnt-out.

    My wife brushes her teeth with very hot water, and my 14 year old (who at the time was 10), went to put on a Thomas The Tank Engine tattoo on his hand and ran up to immerse his hand under the water to make it stick and ended up scalding himself. The 20 year old camp counselor at the camp he was attending contacted Children’s Aid because when the counselor asked him what happened to his hand, he replied, “mommy burnt me”. We were subjected to a very invasive investigation by Children’s Aid that EVENTUALLY found we were innocent of abusing our children, which of course we were. We’ve had MANY trips to the hospital due to our children injuring themselves because they’ve put something in an electrical socket, jumping on and falling off the bed, insisting on touching our gas fireplace, finding some of our hidden prescribed medication and ingesting it, swallowing our older child’s marbles……..and much more. Some of these incidents were due to negligible impulse control; others to an unappreciation of the concept of personal safety. Now we live with the perpetual fear of having our children apprehended for any type of mishap which, however, has not happened yet due to our constant and exhausting vigilance.

    Our house is completely trashed by the end of the weekend, and we are exhausted to the point of collapse by Monday morning BEFORE the workweek, thus commonplace and consistent house and yard work has become a distant memory. We have broken light fixtures, ruined furniture, holes in dry-wall, a exponentially growing laundry pile, and a mountainous sink full of dishes.

    We love our children with every fiber our being, and everyday we battle with the worry about what will happen to our children when we inevitably pass on. I have a high stress career in law-enforcement and can empathize somewhat with what a soldier might experience. But I can promise you…………NO ONE can ever be able to put themselves in my wife’s shoes or mine.

  41. Melissa says:

    As a single mother of 6, one which is autistic we do need more programs to help families handle the everyday stress. Employers should be more considerate and let them have a set schedule, since autistic kids need a consistent routine.

  42. Sam says:

    As the mother of an autistic adult, I can totally related to this article. My son tried several living arrangements that never work. He cannot work because he is too impulsive, scattered and stubborn and babyish. He is drawn to the wrong people. His needs are long and he cannot fulfill them. He becomes disconnected and angry. I am constantly in a state of woe because he never reaches a plateau with all his experiences. He says he’ll listen but never does. We are running out of options. I feel like I flunked the course although I know I have tried everything to help him. Nothing does the trick.

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