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.