stress

Hidden Stress: Parental Burdens Caused by Autism

If you ask some friends for the first thing that comes to mind when you say “autism”, many will respond “Rainman” or “Forrest Gump” (even though Forrest was, in fact, not autistic).  Many people have an idea of what autism is, and to a lesser extent, know how it affects an individual’s communication and social skills.  The media paints a picture of autistic individuals through movies and characters, and one can find many articles pertaining to autism in the news.  However, what most people don’t see in the media, or even consider when thinking about autism, is the effect it has on families, especially parents.  Of course the main effects of autism are on the individual who has the disorder, but the parents are greatly affected as well.  I will discuss some of the difficulties and stress experienced by parents with an autistic child due to diagnosis, treatment, and everyday life.

Diagnosis is the first source of stress for parents because of the uncertainty and high costs.  Bringing a baby home from the hospital for the first time is often a joyful and happy experience for families.  But then as the baby starts to develop, parents start noticing a lack of communication skills and natural development in their child.  After a while, parents realize there could be something wrong and it is time to go see the doctor.  Families with autistic children are more likely to encounter problems getting referrals, coordinating care, and receiving support, [1] and it thus takes longer to meet with a doctor.  Many doctors dismiss the parents’ concerns or don’t take them seriously, believing that parents are just being overly cautious, which draws out the diagnostic process.  The uncertainty and frustration of the process produces extra tension in the family because parents who only want to know what might be wrong with their child are forced to endure a long wait.  Another added stress factor is that families with Autism Spectrum Disorders (ASD) have higher out-of-pocket expenditures, experience more financial problems, and report needing more income [1] than do families without autism due to the increased medical expenses incurred from diagnosis.  Diagnostic uncertainty, combined with increased financial problems, causes stress to proliferate in parents with autistic children.

Once a conclusive diagnosis has eventually been reached, treatment can finally begin to assist the child in development.  However, the treatment phase is also stressful and frustrating because of the amount of therapy needed for the different developmental and physical challenges associated with autism [2].  Children who have behavior and speech difficulties undergo therapy that requires repeated sessions until the therapist decides they don’t need it anymore.  For example, speech therapy is needed for many ASD individuals because of a delay in speech development.  This therapy can involve working on individual word pronunciation, or the focus can be more on interpersonal communication skills like looking at a person when talking to them.  This could take several years in more extreme cases, depending on the severity of autism, because of the small steps that are taken each therapy session.  Therapy for autism can be compared to other therapies, like those for depression, in the sense that therapy requires many sessions over periods of time, and also in the sense that a person is not “fixed” after just a few sessions.  The repeated sessions over long periods of time can be stressful, especially if there is not a noticeable difference in the child from the parent’s perspective [2].  A simple task like driving to the therapist’s office, sitting through the therapy, and driving back can bring more stress to parents than expected.

An aspect associated with ASD is hypersensitivity to certain stimuli such as loud sounds or lights.  Parents have to consider how their child will react to all of these different stimuli with usually unpredictable results because even the parents can’t predict which stimuli will upset their child [3]. Taking a child out in public like this can cause tremendous emotional stress for parents because the behavioral and developmental problems of children with ASD cause them to be highly unpredictable.  This is one of the main concerns for parents taking children out in public [3] because the child can have disrupting outbursts and tantrums.  Another cause of emotional distress for parents is the judgment issued by others on their child, and on them as parents [3].  The lack of definitive, visible signs of autism causes outsiders to view autistic children as “normal”.  Thus when an outsider sees an autistic child throwing a tantrum in public they pass judgment on the child.  Since children are usually a reflection of the parents, this causes stress for the parents because they are being judged as possibly “bad” parents for not controlling their child or allowing them to throw tantrums in public [3].   The judgment of the parents’ job by others causes stress because not only can the parents not control how their child reacts, they also realize that their child cannot really control many of his or her own actions.

The emotional stress from diagnosis and treatment can strain parents even to the point where the frequently experience anger and depression.  We have seen that raising a child with ASD can cause emotional stress and strain family finances.  But does this mean that there is more stress and anxiety in ASD families than those without?  In fact, raising a child with ASD causes both parents to be more psychologically distressed [4].  Parents with autistic children have higher stress levels compared to parents dealing with children with other disabilities such as Down syndrome or other similar disorders [4].  Parents are especially affected by the psychological and emotional stress imposed by autism.  When parents are stressed, they can become easily irritated and frustrated.  It is not surprising then that parents raising an autistic child are significantly more likely to experience elevated levels of anger and depressed mood [5].  An unpredictable child could make any parent upset and angry, but parents raising autistic children have the added pressure of treatment and financial burdens.  When you combine all of these factors, it is not surprising to see that parents raising an autistic child are more likely to be depressed.  Mothers are more likely to feel depressed than fathers, [6] which could be due to their increased sense of personal burden because of the child’s constant need for care [7].  At the root of all of this anger, stress, and depression in families is autism.

There are also many ways in which families work to cope with the stress, anger, depression, and overall strain on the family.  One of the most significant ways to reduce the negative emotions and strain in a family is for the parents to have, or work towards, a good marital relationship [8].  While this is true for any family relations, it is even more critical in a family dealing with ASD because of the importance of unity in the family to help treat the child together.  If there is a bad marital relationship, parents become distant, and this is especially seen in fathers [8].  Also, a poor relationship between the parents can cause even more stress and tension in the family that compounds the original stressors from autism.  A healthy marital relationship has been shown to reduce the burden felt by the parents [8].  Coping with the stresses of autism is essential for establishing a strong family support system, and this system is necessary for the child to have as happy a life as possible.  To cope, many parents, especially mothers (who experience more personal burden than fathers), work to find time to be alone, plan ahead, educate themselves about autism, reframe difficulties in a more positive light, and work in a close, supportive relationship with their spouse [9].  Even though these methods will not work for every family and require a great amount of effort on the parents’ part, they are a significant way to begin reducing the burden of autism on the family.

Many people may think that having an autistic child would be a horrible, life-changing event.  It is definitely life-changing, but not horrible.  When we look at how many of the negative factors can be managed in some way, coping with a child with autism is not horrible, just different.  Depression, marital strain, and even stress can all be reduced or managed through supportive groups and resources.  There seem to be more resources for the child’s difficulties than for the parents, who face just as relevant and severe problems.  By seeing a therapist or marriage counselor, depression and marital strain can be addressed in the parents so that treatment can start for them as well [9].  This is important because the parents, as the main care providers for the child, need to be healthy and able to assist their child in his or her development.  Also, more trained caregivers would allow parents to get the time away they want and need to keep a healthy relationship [9].  Programs tailored toward parents dealing with ASD could help alleviate some of the stress by identifying the causes of stress and making the parents aware [9].  By being aware of the sources of stress, and realizing that they are indeed more stressed than other parents, parents can work to adjust and fix certain aspects of their lives to help reduce stress and strain.

While the autistic individual is not the main topic of this article, they do play a significant role, as they are a part of the family dynamic that is affected by autism.  But with successful coping and substantial supportive resources, families with autism can live a happy and full life.  More supply of and access to therapists and counselors, along with autism-supportive programs, would give families a much better way of coping with autism.  Even with the financial and emotional burdens that autism brings to families, there is hope that autism will bring a family closer, be happier, be more open-minded, and be better off from the influence of autism in their lives.

References

  1. Kogan, MD, BB Strickland, SJ Blumberg, GK Singh, JM Perrin, and PC Van Dyck. “A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006.” Pediatrics 122.6 (2008): 1149-58. Print.
  2. Schieve, LA, SJ Blumberg, C. Rice, SN Visser, and C. Boyle. “The Relationship Between Autism and Parenting Stress.” Pediatrics 119 (2007): S114-21. Print.
  3. Ryan, S. “‘Meltdowns’, Surveillance and Managing Emotions; Going Out With Children With Autism.” Health & Place 16.5 (2010): 868-75. Print.
  4. Ekas, N., and TL Whitman. “Autism Symptom Topography and Maternal Socioemotional Functioning.” American Journal on Intellectual and Developmental Disabilities 115.3 (2010): 234-49. Print.
  5. Benson, PR, and KL Karlof. “Anger, Stress Proliferation, and Depressed Mood Among Parents of Children with ASD: a Longitudinal Replication.” Journal of Autism and Developmental Disorders 39.2 (2009): 350-62. Print.
  6. Davis, NO, and AS Carter. “Parenting Stress in Mothers and Fathers of Toddlers With Autism Spectrum Disorders: Associations With Child Characteristics.” Journal of Autism and Developmental Disorders 38.7 (2008): 1278-91. Print.
  7. Dabrowska, A., and E. Pisula. “Parenting Stress and Coping Styles in Mothers and Fathers of Pre-School Children With Autism and Down Syndrome.” Journal of Intellectual Disability Research 54.3 (2010): 266-80. Print.
  8. Hartley, SL, ET Barker, MM Seltzer, JS Greenberg, and FJ Floyd. “Marital Satisfaction and Parenting Experiences of Mothers and Fathers of Adolescents and Adults With Autism.” American Journal on Intellectual and Developmental Disabilities 116.1 (2011): 81-95. Print.
  9. Kuhaneck, HM, T. Burroughs, J. Wright, T. Lemanczyk, and AR Darragh. “A Qualitative Study of Coping in Mothers of Children With an Autism Spectrum Disorder.” Physical & Occupational Therapy in Pediatrics 30.4 (2010): 340-50. Print.
  10. Head in hands. (Flickr). 2010 Aug 29 [cited 2011 July 26]. Available from: http://www.flickr.com/photos/ceasedesist/5005199536/

Austin Brown is a third-year biological sciences student at the University of Chicago.

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  • Dee

    Would that the treatment was covered! We just lost the appeal with insurance with OT and Speech. Now that my son is three he is no longer receiving these services from the regional center (the CA agency that takes the place of insurance because our full insurance covers nothing) and we are left with little treatment. This is a medical condition. It requires treatment. My son was doing so well with treatment. I do everything I can at home to reinforce the lessons I learned during his therapies but it is not the same. I am not asking for a hand out. I am asking for insurance that I pay for to cover and treat my son.

  • Wouldn’t it be nice if these “resources” were available? They’re not something everyone has access to. Not everyone lives in a metro area or suburb. Not all of us can move to one. I would love to participate in something like these parental support groups… but unless they’re offered, I can’t. We won’t even begin to go into affording them.

  • Scott A

    I think the writer should have talked to a few parents of kids on the spectrum. There is far more stress involved in fighting for treatment than there is in receiving it, and accurate diagnosis often involves seeing multiple professionals over a period of years. And how can one discuss the stress of raising a child on the spectrum without mentioning the behavioral issues typical of these kids, or the lengthy battles that must be fought with school systems. The greatest stress isn’t finding out about a diagnosis or getting them treatment, but rather the behavior issues and problems that result from ASD. The second greatest stressor for most of us is probably fighting for services from school systems, insurance companies, and even doctors who have no desire to treat or help your child.

  • jean low

    my husband and 2 grown children have aspergers,when my husband and his twin were born in 1942 there was no such thing as aspergers????it was only when my oldest child was25 yrs old and sectioned under the mental health act for schizaphrenia did the name aspergers come up?it was only after this that my husband was diagnosed,[privately]g.p,would not fund,but now after discussinf family background the psychologist thinks aspergers may go back 5 generations in his family,i also work with autistic and aspergers adults and children and his whole family present as aspergers,both classic passive,and sub group,out going agressive aspergers,the effect on me of living for over 40 years with aspergers family,total mental health breakdown,3 undiagnosed aspergers people all in one house,nightmare.of arguements ,violence,missunderstandings,all totaly obsessive,all manic,2 also o,c,d,can you imagin impact on me as a mum?now after husbands diagnosis at 65 yrs old,things are better,he is now on meds to help him be calmer,and i have learnt how to handle his behaviour and meltdowns,i belong to 2 self help carers groups here in u/k,.one for mental health carers,one for wives of aspergers men,i also run site[closed]on face book for others in my position,so must admitt i do chuckle when its mentioned how stressfull it is getting child diagnosed,it did not exist in 1967 and 1971,when my aspergers kids were born,so please remember all those wives out there who are still married to undiagnosed aspergers men?as TONY ATTWOOD SAYS,for every diagnosed aspergers child,there is usualy an undiagnosed parent or grandparent???

  • There are parents who are so overloaded with stress, they have P.T.S.D., suffering from poor memory, with difficulty concentrating, …having difficulty being social – or wanting to because they’re just so blasted tired from being on combat maneuvers with their child or children all day long – and some times half the night…only to get up and do it all over again. They’re shellshocked because they’ve been at it so long and so hard. They live from one minute to the next wondering when is the next “attack” (meltdown or what have you) coming? What crazy thing is going to set them off next? How long will it last – and will I be prepared? The constant apprehension, the constant planning of every minute of every insigfnificant detail of every move that we make every where we go with them, every single day. Even after you’ve learned what triggers your child has, and you begin helping him work through it and he makes great strides, it’s still subject to the way the wind is blowing some days! Taking a kid with autism out in public is something we have to do to teach them how to function…but we need the understanding of folks in the community to do that…these days, it’s the strangers in public who do not understand autism that add to my stress…when a grown man can tell my 8 year old son that he needs his “a** whooped”…a very major boundary has been crossed…what’s worse, his own three sons, (younger than mine) were standing there motionless, expressionless, as still as statues – like that was normal and ok for their father to tell some kid that. Even if my son were neuro-typical and had knocked the seed packets out of the man’s hands, he still was not justified threatening him in that manner with violence and vulgarity. More recently, a woman in another store had a fit when my son simply moved her cart a few feet away from her – I mean a fit, not just a comment or a rude remark – but a fit! (Maybe she was having a bad day?) I was going to apologize, but decided, you know what? I’m tired of apologizing to rude, nasty strangers who don’t even accept my apology anyway…and said, “Oh grow up will you? He’s just a child!” And with that I walked away. I started to feel guilty, but then something inside of me just said no…I will not feel guilty for having a child with autism who struggles in public places…I am not a bad parent…I pour myself out everyday trying to help my son…but I can’t do it alone. In public, I NEED the help of my community…I am at the mercy of strangers when I take my child out in public…I CANNOT do it without them…WHO will help me? WHO will understand the pain I feel when someone is rude to me because of my son’s disability? WHO? WHO? WHO? I’ve come to the sad conclusion that the reason I hear silence when I ask that question, is because the people who could help me are not listenting, or do not care because they live in a perfect world with perfect neuro-typical children and life is so great for them, that I am nothing more than a pitiful nuisance to them which they feel they must distance themselves from. I want to say to them, do not feel sorry for me. I do not feel sorry for myself. In fact I feel blessed that God chose me to raise a child with a disability…not everyone can do that. I’m on a mission to raise the child he gave to me, so strangers in public, either help me by being kind or say nothing and take your three feet of personal space and move on…you have that option…and may I tell you something my mother used to tell me? If you can’t say something nice, don’t say anything. Please? Thank you! I’d like to ask my facebook friends to help me write something titled the Autism Social Manifesto…a proclomation from parents everywhere to help educate the strangers we encounter in public, yes a manifesto! Though anger has motivated me to write it, I’d like it to be something inspirational, educational, motivational, and very thought provoking…something positive, because God only knows we’ve put up with enough rudeness and vulgarity from strangers…we don’t want to be like them – and if we were who’d listen? Please send me your comments in an email to 3burgers2go@opexonline.com​ – it will be a work in progress for awhile, so take your time, I’ll post things here and there on facebook as I go along…nothing will ever change if we say or do nothing…

  • Tamara

    Check with the special needs director with your school or school board main office. They did his hearing and eye tests for free foe my son as well as including ot, speech therapy, and behavioral therapy. My local community counceling center also has a dept for families of special needs kids and they do and organize support groups and also put me in touch with a equine therapist ( horse therapy) which is only 10.00 an hour and I see an explosion of speech for days after each session for my son. I have also gotten a golden retriever that I am sending to be trained. I think the hardest part for me is the stress then I would say the next hardest part is knowing where to look for help. I will also add music therapy to his IEP at the next meeting and I had to request the use of an autism vest at the last meeting. The school pays for all of this. Most of the problem is knowing where to look and sifting through the wealth of info out there. But I learned that no one is going to help my son but me and that I had to be very proactive in order to get the help he needs, most especially since I don’t live even close to a big city.

  • I’m not asking for help for my son. He’s in a great school, we have a great support group, there are plenty of great resources available in the community, he sees a great psychologist once a week. However, he needs opportunities to generalize the things he is learning in therapy and at school…and the greatest help I can give my son right now is to help him learn how to socialize and function in public places…so that some day he may be able to do it on his own. The ignorance and unkindness of strangers in public as I attempt to do this makes this a very difficult thing to do…this is not about my son – or even me. It’s about the fact that this is an issue that needs to be addressed with the sector of the public who take it upon themselves to make unkind and rude remarks, threats, and other behavior that is uncalled for when they see a child with autism struggling in public. Too many people are too quick to assume that what they are witnessing is the result of bad parenting, or that the child having a meltdown is simply spoiled – or worse, needs a spanking! Too often perfect strangers proceed to dispense unsolicited parenting advice that is offensive and ignorant. Many of the parents I know could share similar and worse incidents that have occurred when they have been in public with their children. We need the understanding of the communities we live in. Taking a child with autism is difficult enough without the rudeness of stranges adding to the situation. That was the point of the previous post…this was a good paper, I enjoyed reading it. The author touched on some points that not many folks talk about. Now the paper will probably be put in an archive or a file somewhere…and then what? Our group has been advocating for greater sensitiviy toward autism families for some time now and papers like this offer great opportunities for the issues to be discussed in an open forum. No one wants to talk about the stresses that autism families are facing, some of them don’t even want to talk about it! But not talking about doesn’t make it go away. Untreated stress and depression can be disastrous for families and children. I feel very blessed to have learned about my child’s autism when he was two. He’s been in intensive therapy since then and is 8 now and fairly high functioning. Something that one of his very first therapists told me has never left me…that I will always be his best advocate…and I’ve found that to be true. I’m thankful for the people who’ve helped us, who’ve helped my son, and now, I believe it’s important to talk openly about the real issues that affect our lives. Too many people are reluctant to speak up out of embarassment or fear – or worse plain apathy! Some are giving up and staying home. The have created a world for themselves and their family and everything is wonderful – as long as they remain inside the bubble of that world they live in…never venturing out to take their child around new people or new situations. Never raising the bar of expectations for their child…when pushing them outside of their comfort zone a little bit at a time is healthy for them. Autism families are in bondage to their child’s disability, as anyone who loves and cares for anyone with any disability…but the social aspect of autism makes it especially difficult. School is something that most parents dread for their children…many homeschool them…many pull them out and pay thousands of dollars for private schooling…the life of an autism family is another world that the large majority of the general public fail to understand. As I said earlier, if we say or do nothing, nothing will ever change. Our group uses a free website at swautismnetworkmo.weebly.com and you can connect with us on facebook by typing SWMOAutism in your browser or the autism support group of southwest missouri.

  • Lots of people know about parenting autism through the media! Why, thanks to Dr. Phil and his ilk, the general public either thinks we’re saints especially chosen by G-d to raise our angel children, or horrible screaming, sobbing stress monsters from parenting hand-flapping bedwetters.

    One facet of autism parenting this article leaves out is how to handle being treated like persona non grata by my own freaking child. I feel like the only respite I’ve had from the chronic heartbreak was the brief period of time I was in denial about her situation. Surely with enough love and effort I can raise a child who is at least willing to try to hold a conversation! You can see how well that panned out. Well, at least the words “chatty toddler” don’t make me cry anymore, but I still have to leave the supermarket when I hear other parents get irritated over their children “bothering” them. (Wait a minute – your kid just asked you more questions in the past 10 minutes than mine’s asked me in 7 years…and you’re COMPLAINING about it? ) I wish I could get some kind of answer to or help with how to handle my energy-draining grief other than “read ‘Welcome to Holland’ ” or “you can’t change her, just your attitude.” Which, you know, I guess the latter is true, but HOW to change it is the part nobody wants to share with me.

  • Jsteiner70

    I would like to invite all parents who relate to this article and who identify themselves with special needs kids to write an essay for the book i am developing. please see the Call for Submissions and posts on the blog. Thank you.

    http://sweetsweetanimal.blogspot.com/2011/10/call-for-submissions.html?m=0

  • Jsteiner70

    Hi Jackie;

    if you see this comment response please contact me and consider writing an essay for my book. We need your voice!

    http://sweetsweetanimal.blogspot.com/2011/10/call-for-submissions.html?m=0

  • tracy

    An interesting read, much of it i can relate to. However my own personal opinion is that living with autism is indeed ‘horrible’. My daughter has very severe autism, is extremely anxious, not happy and distressed most of the time, i personally do not see any good in seeing my daughter like that day in day out. I hate it, i feel as a parent a failure, I want to comfort my child but she will fight me and push me away.I am not in a relationship as a mother to her i am no different to anyone else. I feel isolated and criticised frequently by others, my own confidence has taken a battering, i have been depressed for years but only got help now because i have PND, so thank goodness for that hey.
    Totally agree with Jackie W below about reactions of parents with other children and complaining about them. My toddler says and understands more than my 8 year old daughter and i am so grateful for that knowing how crushingly sad and jealous i am when i see other 8 year olds.

  • Cindy

    Jackie,

    I felt the way you felt for years. I have three kids on the autistic spectrum (one of whom feels she never should have been diagnosed on that spectrum). They are now 26, 24, and 22. What helped me was seeing a psychiatrist and developing an attitude of thankfulness. When my kids were young, I felt like I was in a fog; against a wall every day. I could not imagine what the future would be like for me or my kids. Yea, every time I read “Welcome to Holland” I get weepy, even now. Because the loss is real. I try not to read it too much. One book that did help me a lot was a devotional by Joni Erickson Tada called Diamonds in the Dust. Joni Erickson Tada had a diving accident when she was a young woman. She is in her late 50s now and has been a quadriplegic for over 30 years. Also, reading this article, I realized that I and my husband did do a lot of the things recommended herein. It was hard, but we did it.

  • Dorvee53

    I finally realized my 16 year old severely autistic son was completely out of control and by 17 he was placed in a wonderful icf – with a 24-7 nursing program. But my daughter (19) and I definitely developed PSTD and we started getting counseling from a therapist specializing in special-needs. Although we have stayed co-parents for our kids, my husband left 3 years ago because the hell was just too great to bear. What is amazing is how any pre-existing conditions are so exacerbated you get more unable to copy, but they’re hidden under the stress of caring for the disabled family member. Well after 1 year of living on our own, my daughter and I were finally able to diagnose that we had ADHD and she also has social phobias. Gratefully now ALL of us are getting the help we need. And I was the mother who said I will NEVER put my son on medication and I will NEVER put him in a facility. He was after all the sunshine of our eyes for so many years – until the ASD caused him to turn into a violent, destructive teenager. Now we visit him every week and shower love on him, but he still doesn’t really talk much, But we will always love him, and now we all get a chance to heal.

  • Jai Bee

    I almost had another nervous breakdown today. My 9 year old child had a week vacation from school and has been destroying everything we own, he started with some dishes, toys, and cupboards then moved on to tearing up our couch, a computer, and finally today it was ink pen on the new car seats. I will never pick up my friend in the new car again as she dropped a pen in the back seat and my son got to it and it won’t come off, even denatured alcohol isn’t working. People really need to be more careful about what they bring or drop around some of our kids. I also deal with my son beating on me, screaming, bolting, making the biggest messes I have ever seen and so on, so another nervous breakdown is inevitable. I have yet to hear one word or see one meaningful piece of sign language from my son which is also stressful because I have to guess what he wants all the time. I am so sick of this type of autism I could SCREAM!!! Oh and everyone I know tells me “one day he will be great at something” because of his autism. Well, what if he isn’t? Why do idiots always say things like that? It really makes things worse.