Last week, a study came out in the Journal of Autism and Developmental Disorders which said, in essence, that in many cases mothers of teens and adults with autism are under tremendous stress. The blog DisabilityScoop cites the study as saying:
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.
Intriguingly, though, the abstract of the study also states:
However, mothers of individuals with ASD reported similar levels of positive interactions and volunteerism as the comparison group. Daily experiences were subsequently related to well-being in both groups.
I found the study a bit problematic, because it looked at "96 co-residing mothers of adolescents and adults with an autism spectrum disorder (ASD)."
First, as anyone who's been around autism knows, people with ASD are as different from one another as they can be, with personalities, challenges and behaviors of every kind and level. So it's hard to have any idea of what these moms were actually dealing with in terms of behaviors or delays. Are these kids/young adults verbal? Toilet trained? Self abusive? Or are they perhaps high functioning, in school, and/or employed?
Second, the "moms only" approach is a bit confusing. Are these mainly single mothers, who may be under more stress than the average mother? Are they unsupported by their husbands? Or was the "moms only" approach simply a research choice?
It's clear that autism in the home is stressful (and comments on a MotherLode blog on the subject are eloquent on the matter). But I'm not sure this particular study sheds much light on the subject.
Do you feel that having a child with autism makes your life overwhelmingly stressful? If so, what are the biggest stressors - and what do you do to overcome them?
- Depression in Mothers of Children with Autism - What's Your Take?
- Helping Mothers of Children with Autism Cope with Depression
- Managing Feelings About Your Child's Autism
- Are Parents Autism's "Hidden Victims?"
I think the reason it is more stressful for those of us helping older children/adults with autism is that there is no support out there. Society is geared towards helping the “child” with autism because of the emphasis on the IDEA and the fact that children with their angelic faces can elicit sympathy. But when you have a disabled adult in your family who can act out and is no longer “cute” society flees. In fact, I think that there needs to be a greater understanding across the board. My oldest child is in college and there is just now beginning to be a reaching out to autistic college students. But the effort is inconsistent and varied. In fact most colleges and universities don’t even get the basic rights and needs of the LD student never mind those on the autism spectrum. Funny how these bastions of liberal thought are so conspicuously ignorant and unwilling to practice what they preach. Then I know there will be the job market to enter. There is stress because it never ends.
This book covers all these issues http://bit.ly/81CbaJ and it is a HUGE issue that has received little attention
I had to select “It’s overwhelming” not because of day to day events, but because the financial drain from supporting an adult with some form of autism/Asperger’s is severely impacting our lives and destroying any hope of retirement. Of course, my son doesn’t care he is financially destroying us because he is intrinsically incapable of caring about others.
It is difficult to quantify the experience of raising a child with ASD based on the questions you asked because most of the answers would be appropriate on different days. Sure it can be overwhelming and stressful….sometimes due the needs of my child and sometimes based on the red tape. Some days I can cope better than others. The key is to realize that the stress level changes daily…sometimes hourly. Our kids also bring joy. The truth is though that depending on the needs of the child…living with a child who has chronic needs can be physically and emotionally draining.
Anna, are you referring to the Lorna Wing book I found when I clicked on your link? It looks interesting, but isn’t about parental stress.
Lisa
What always seems to be left out of these types of studies are questions to the mother about how she handled stress prior to having an autistic child. If the mother of an autistic child says, “I’m overwhelmed and stressed every day and find it very hard to cope,” that’s one thing. But she should then be asked, “Before you had children, were you often overwhelmed, stressed and finding it hard to cope?” Without this information I think the results of these studies are meaningless.
I take care of my Adult Uncle who is high functioning for the most part however, it is very stressful. I am unable to leave to go see my daughters that live out of state without taking him. Traveling with him is very difficult because it is a change in his routine and he does not respond well at all. He will damage things occasionally when needsaren’t met or plans aren’t clear. Financially, even though he has some income from SS. It is not aduquate to meet his needs at times, especially with clothing and gas. Also he sometimes has incidents that occur when I am at work that I have to leave to take care of. Never mind that I have 3 grown children of my own that need support. Because he is high functioning in alot of areas people it is difficult to find help and yes it is stressful at times. I personally love my uncle for much and take all in stride but wish I had more support.