The Stressors Sometimes Felt by Family Members of Autistic Children
While stress that is felt by an Autistic person is hard on the Autistic individual, it is hard on their families as well. The stress that families feel due to the meltdowns their autistic family members inflict on them alone is astonishing. Family members experience and respond to stress in different ways. There’s no one right way of feeling or responding to your child with Autism Spectrum Disorder; but, does help to be understanding of each other’s feelings.
Autism is a stressful disorder to live with without the impending meltdowns and other behaviors that come along with it. Over time these stressors can break even the strongest family member down. So, what do we know about this stress and what can you do about it?
What we know:
We know that Autistic behaviors can induce stress on already stressed relationships. Two frequently mentioned contributors to stress associated with child behavior were meltdowns and/or aggression. Thanks to an Ian Project study we know that families rate meltdowns as one of the highest stressors involved with raising an Autistic individual. Even when stacked up against such stressors as lack of sleep, eating issues and lack of emotions- meltdowns ranked up there as the second highest stressor. Lack of sleep ranking as third and finding a service provider ranked as the largest stressor on parents.
We also know thanks to Autism Speaks that fathers seem to have a harder time with meltdowns than mothers do. Mother’s, again, tend to rank lack of sleep and “public outings” as some of the more troubling stressors.
After all, handling Autism requires an exhausting hyper- alertness and emotions. It’s normal to feel a range of emotions. At different stages in your child’s life, you might feel “shock, sadness, anger, denial, loneliness and acceptance.” These feelings can be a source of stress for you and other people in your family.
This makes interacting with the outside world troublesome at times. Never knowing when a meltdown is coming, or not being able to always avoid the triggers leads to added stress in public. It feels like the weight of the world is on your shoulders. Relationships strain under the stress of Autism. It can lead to a lack of confidence in areas where confidence is needed.
Such areas where confidence in relationships can be lacking:
-a lack of intimacy
-a lack of focus
-monetarily, due to therapy fees and special diets.
Some studies show that the divorce rate among parents of Autistic individuals is somewhere near 80 percent, while some estimate it to be more at 20 percent, either way- it is much higher than that of a “normal family.” For example, mothers are often more stressed than fathers – possibly because mothers tend to be the primary caregivers in many families. Members of the extended family can feel stress too, as they watch how the family is responding to the child with ASD.
We also know that siblings of Autistic individuals seem to show some amount of stress from having an Autistic sibling, in some cases. Mostly it seems that embarrassment is the biggest stressor for the sibling. Not so much the embarrassment of having a special needs sibling as it is the embarrassment of others in society pointing out said special needs sibling in public. It wears on the sibling as they feel they are always being pointed out. Now notice I said, “in some cases.” This is not always the case. Some siblings feel stress from the meltdowns because they feel their parent’s stress but could care less about whether strangers pay attention to the behaviors of their siblings in public.
For example, my 14-year-old Autistic son carries a stuffed animal around with him everywhere we go. He talks to it and makes it talk to him, and cashiers (and anyone that will allow the stuffed animal to talk to them as this is how he communicates.) While this may embarrass some 12-year-old siblings, in my family’s case my youngest son could care less about the stares and snickers that we hear when we are out. What bothers him is when his brother melts down at home because it is sometimes much harder to get under control at home than it is in public. He feels my stress at home. This is what bothers him the most.
Families with children with autism spectrum disorder (ASD) feel stressors in other ways than just meltdowns too though.
They can feel stressed because they:
-are coming to terms with the diagnosis
-are having trouble finding a service provider that is in their area and takes their insurance, and knows what they are talking about
-finding speech, sensory and occupational therapists in their area
-feel overwhelmed by the things they don’t yet know or understand about ASD
-they don’t know what the diagnoses means for their children
-feel they have little control over the future for their children with ASD
-are having trouble handling their children’s other challenging behavior, including how children interact with others, eat or sleep
-finding it hard to manage their time; doing things with a child with ASD can take longer and can often be frustrating
-worry about who can care for their children with ASD when they need a break.
So, with all that said, what can we do to help alleviate some of the stressors associated with Autism?
What can we do:
There are things that you can do as a parent, or spouse, to help manage your family’s stressors from meltdowns.
Be aware that your partner and other children will respond to stress differently. This means the support that they are going to need from you is going to be different. This is an important point to remember.
The more you know about how your child’s Autism and Co-morbid disorders affect their behavior and meltdown’s the better equipped you will be to prevent and/or minimize your families stress.
Prepare yourself beforehand for situations that you know will cause stress or a meltdown. Doing the decreases the stress felt by your family members.
Relax and Breathe! Meditate, practice positive thinking or self-talk if you must. Whatever you must do to keep yourself calm.
Get help if you feel you need it. This can be simple things you do daily like journaling, exercising, or advocating. Connect with service providers, support groups, and so forth that are around you. Being able to talk to people going through similar situations is key to learning coping mechanisms for stress.
If you feel frazzled your notice your family is stressing, don’t ignore it; don’t think it will fix itself. Your family being ok is important to preventing and managing stressors as well. If you need help seek out counseling or respite care. Just don’t ignore it.