Autism and Parental Depression
When you think of Autism you often think of the obvious issues that families deal with; the meltdowns, the lack of eye contact and the lack of speech. Very rarely does the general public or the newly diagnosed parents think of the “small” issues that we deal with that often go unspoken of. One such issue is parental depression. Sometimes living the life that we must live leaves us depressed and stressed out. Whether it be from a lack of social communication with other adults or just the feeling of being overwhelmed. It certainly is not easy to be the parent of a child on the Autism spectrum. There are joyous moments, but there is no denying the challenges parents face, and the toll these take. Parents also have to worry about themselves getting sick, fighting for services, sacrificing careers, sinking into debt, and some simply rage at the injustice of it all. Parents grieve. We are allowed to do so. I find myself there right now. The monotony of each day, the meltdowns, the constant doctors’ appointments, the lack of sleep, the lack of understanding by both my family, friends and my son… it all gets to me from time to time and right now is one of those times.
Most parents of children with disabilities or chronic health problems suffer a great deal of stress. It is important to point out that being the parent of a child on the Autism Spectrum does not cause depression, nor will these parents necessarily experience the negative feelings that go with depression. However, in an “effort to provide the best possible care for their child, parents often sacrifice their own physical and emotional needs and the emotional and physical experiences involved can strain even the most capable person. The resulting feelings of anger, anxiety, sadness, isolation, exhaustion — and then guilt for having these feelings, this can exact a heavy toll.”
Per a study released by Ianreport, “there is evidence that parents of children on the Autism Spectrum suffer the most stress of all.” Per their report, there are several reasons why stress of those parenting children with an Autism Spectrum Disorder (ASD) is so high. As we all know, parents of children with disabilities must cope with grief, worries about the future, and the struggle to find and obtain appropriate services. Parents of children with ASDs face some additional stressors. Ian broke it down into 3 main reasons why Autism causes more stress which leads to depression.
Reasons for Excess Stress in ASD Families:
-1. We often “live with uncertainty about what caused [our] child’s Autism, as well as possible guilt (no matter how undeserved) over whether [we] did or failed to do something that led to [our] child's ASD.” This is so true in my life and I bet in the lives of many of you. I now know what caused my son’s Autism but for years I did not, and I questioned myself every single day. Wondering if I did something wrong while I was pregnant. Wondering if it was something I did wrong once he was born. He was in the NICU for a month when he was born, in a coma. I often tore myself apart trying to figure out if something happened then that caused his Autism. For some reason it was very important to part of me to know what the reason was that my child is the way he is. Then my youngest was diagnosed and the wondering sat in double time.
-2. Another reason that there is more stress in ASD families than other families, which can lead to more depression, is that “the core disability associated with ASDs is a social one. Most parents hope for a warm and loving relationship with their child. It is bewildering to find you have a baby who does not like to be held, or a child who will not look into your eyes. Parents adapt, learning to love the way their child loves, but usually not without having passed through some confusion and pain.” I deal with this stressor as well. I have for almost 15 years. I fought for my children’s first words and continue to make sure they learn to be appropriately social every single day. It is exhausting. It is not only exhausting, it is heart breaking.
-3. Lastly, no matter what their specific ASD diagnosis or IQ, children on the Autism Spectrum often “have problem behaviors, from refusal to sleep to intense and frequent tantrums to extreme rigidity. These behaviors can make living with them day-to-day very trying and lead to another variety of guilt: the kind you experience when you are not feeling loving toward a difficult child. In addition, such behaviors strain the entire family, impacting sibling relationships and marriages. Such stress is not only damaging in its own right, but also has been linked to higher rates of depression.”
What Are the Signs of Depression?
Depression shows itself in different ways. Per WebMD, common depression symptoms are:
-Depressed mood, sadness, or an “empty” feeling, or appearing sad or tearful to others
-Loss of interest or pleasure in activities you once enjoyed
-Significant weight loss when not dieting, or significant weight gain (for example, more than 5% of body weight in a month)
-Inability to sleep or excessive sleeping
-Restlessness or irritation (irritable mood may be a symptom in children or adolescents too), or feelings of “dragging”
-Fatigue or loss of energy
-Feelings of worthlessness, or excessive or inappropriate guilt
-Difficulty thinking or concentrating, or indecisiveness
-Recurrent thoughts of death or suicide without a specific plan, or a suicide attempt or specific plan for committing suicide
What Do We Know About Stress and Depression?
We know because of Ianresearch that depression is different in mothers and fathers. Researchers have found that "mothers of children with Autism, as compared with mothers of unaffected children or children with other disabilities, suffer the most from depressive symptoms. Fathers also suffer from such symptoms, but to a lesser extent than mothers. This may be due in part to a gender difference in how distress is expressed." Others claim that men tend to become depressed in reaction to different stressors than women do, with problems at work and divorce felt more intensely by men, and problems in their network of interpersonal relationships felt more profoundly by women.
It is noted “that having a child with a disability is more likely to disrupt a mother's relationships with relatives, friends, school personnel, and health-care representatives than it is to disrupt a father's job.”
Furthermore, “research has shown that women in families with a child on the spectrum tend to bear the brunt of day-to-day burdens and domestic labor; end up responsible for managing the higher levels of conflict in these families (between Autistic and non-Autistic siblings, for example); and receive more blame from outsiders and their spouse for their child's behavior. Any of these could certainly detract from a caregiver’s ability to cope.”
So, What Do We Do?
When there are so many negatives it is hard to see the positives. However, there are a “number of options for action.” Per Verywell.com, “while none will change the underlying truth that Autism is here to stay, many can help parents cope better with the emotional strain.
-Find support among like-minded parents of children with Autism.
-Seek respite care, so that you and your partner can get away together for a well-deserved break.
-Seek professional help from a therapist with experience working with families with special needs.
-Try journaling to relieve your stress.
-Lower your therapy costs by choosing low-cost, low-risk treatments for your child with Autism.”
No matter what you do, make sure you deal with your depression. Don’t just let it fester. Don’t let the issue become worse than it already is. Look into your options. If you need to seek professional help, please do so. Respite care is also an excellent way to get a break. Just make sure to take care of yourself alongside your child.