Monday, July 25, 2011

Thinking about Parental Stress and Autism

I have read in several places (and heard one NPR piece) about how parents of children on the spectrum report higher stress levels than parents of children with other disabilities, such as Down syndrome. The most likely causes of this are related to the nature of autism itself. First and foremost to my way of thinking, many children with autism are unable to show affection in ways that are satisfying to parents (hugs, kisses, saying "I love you," expressing appreciation for what the parents do, etc.). Lacking the ameliorating effects of this positive social feedback for their job as parents, they are much more likely to feel stress.

Frankly, I'm surprised actual research money needed to be spent figuring this one out.

In the past, I posted on Questioning my Intelligence that I don't feel excessively stressed by Jack's diagnosis, and part of the reason for that may be lessons learned during my struggle with depression. For me, Jack's diagnosis meant a lot of driving around and sitting in waiting rooms, and coordinating care with therapists and doctors and teachers. But at no point in this journey have I asked God, "Why Jack? Why me? Why our family?" When I read about people's stress on getting the diagnosis and as they continue to care for their child, I absolutely understand the rage, the fear, the self-pity, and the self-loathing.

I understand because I felt all those things twenty-five years ago when struggling with depression. Other than the fear, however, none of those feelings have touched me in relation to Jack's diagnosis. The fear is there every day: fear that we're not doing enough, not doing the right things, missing something that might help. There's also the fear of what challenges Jack will face and how cruel the world might be to him as he grows up.

But more fundamental to my ability to cope with the stress of having a child with autism is the level of feedback I get from Jack. He's high-functioning, affectionate, loving, deeply appreciative. He's verbal and says he loves me. That makes the hours of waiting in rehab, driving all over creation for appointments, worrying and fretting and thinking and stressing absolutely worth it and much easier to bear.

If he didn't have his demonstrative nature, if he couldn't talk or wouldn't hug, I wouldn't find any of this journey as easy as I have. A friend with an adult child on the spectrum was astonished when she witnessed Jack telling me he loved me and giving me a hug. Her son doesn't do that. It breaks my heart for her, but she seems to have made peace with it and appreciates her son for who he is. She glows when she talks about him, and that alone says a lot about her character. How I admire her strength and faith!

So here's my question for today. What do you do to cope with the stress? What is your perception of your stress level and to what do you attribute it?

This is a huge topic, with far too many variations for a single blog post...or perhaps a whole book. I'm just scratching the surface here, but feel free in your comments to bring up whatever strikes you most about the topic of parental stress and autism. I'll be posting in the future about those sub-topics that I've noticed myself (such as the stress caused by parents who act like you don't love your child if you don't put him/her on the GFCF diet or in ABA), but it would be great to have more suggestions!


Carrie Wehmeyer said...

For me, the stress comes mostly from the behaviors exhibited by my son and daughter. At first, there was fear and anxiety and a real need to "find a cure". Soon we both realized we had to give them over to God and not freak out about what things will be like down the road. We just love them and care for them to the very best of our abilities. Now the stress comes from sleeplessness and anxiety about consequences of their behaviors.

Anonymous said...

I cope by attending support groups, making sleep a priority and getting babysitters for no other reason than a break.
There are several types of stress - as you said this is huge! A major one for me is that the community at large doesn't understand autism. By in large people just expect parents to get over it and get on with it. Advice comes from the ND perspective of "just accept her as sh is" as if that will make everything easy or 'just treat her like a typical child,' as if that were even possible. With the impact autism has on your lifestyle, it's not as simple as that.

JoLynn said...

This is a great topic, Susan. Thanks for opening it. Interestingly enough, my depression diagnosis came as my boys were being diagnosed on the spectrum. I had a complete break. At that point, Max was nonverbal, and screams were his communication mechanism. Ignatius was hearing voices and dealing with severe anxiety attacks. Then, my best friend passed away. On top of that, I am a teacher, and we are supposed to be able to multitask all the stresses of the world. Well, I know what a breaking point feels like: November 9, 2007. Once I got myself a bit healthy (I don't think this garbage will ever go away; I just have to learn to cope with it) I had a chemical weight gain of around 60 pounds.

I have just recently lost all but 13 of those nasty little pounds, and the main thing that helped is the main thing that keeps me sane: exercising, specifically, Zumba. Not all exercise is created equal. Zumba feels like I am going dancing with my girlfriends, but I can call it "going to the gym" and it's OK to me a hot mess when it's all over. Consistently exercising keeps me in check. Being accountable to my other friends who take the class has been priceless.

My kids are fairly affectionate. Max took a while to get there, but when he is affectionate, I feel like I won the lottery. The only sadness I encounter is when he is among "neurotypical" 6 year olds. That is when I feel myself grieve. School shows. First day of school. Halloween parade.

His speech is really delayed. Other kids are awesome, but I know what happens in the next two years...I saw it with my older son. The social gap will widen. Kids will be more apt to point out Max's oddities. And it will be heartbreaking. I don't want him to change. I want his world to change.

Jerusha said...

I am so fortunate to have a son that is able to tell me he loves me and give hugs. Love is something he understands. He doesn't understand ALL feelings, but love he does and I am grateful. That doesn't mean life with him is not stressful. It most certainly is! (As I type this, my son got sent home early AGAIN due to bad behaviour!)

I deal with stress through my creative process. Nothing like making a card, crocheting something or even sewing to make my stress dissipate!

Mynnette said...

I am not a mother of a child on the spectrum, but I work with children on the spectrum in a school setting as well as in a respite setting. I've found that a lot of stress comes from trying to anticipate behaviors and then questioning WHY they happen. All the behaviors stem from the main issue of communication, but is that hit because the child is mad, or simply because the child is over stimulated and in need of some sort of release? Over analyzing things is what stresses me out as a caregiver.

How do I deal with this? I educate myself! I am constantly seeking out more information to make myself a better person for these children. They deserve to have their needs met. I will never be the best, but I feel that if I am striving for the best, God makes up the rest.

I feel for all parents of children with special needs. I worry that once I am able to carry a pregnancy to term and have an actual child that they will have special needs. Maybe this whole experience will help me cope with that stress if it ever comes. For now, I will do my best to educate myself to help those I serve. I love what I do! :)

Susan Raihala said...

Thank you, everyone, for your comments on this topic. And I think I can speak for everyone when I say thank you, Mynnette, for working with people on the spectrum and seeking to understand their needs and motives. Good care is essential because our kids sure need it!

Aunt Min said...

At some point, I just accepted that we all have our challenges--this was my son's challenge. While I would support him, it was not my challenge. I had a minister once who said, "the most effective help you can give someone, is to stand outside the hole and offer your hand. That is more effective than being down in the hole with them." That freed me up to define my life as being intertwined, but separate, from my kids, which relieved my stress by allowing me to explore my own interests. Shall I say Papercrafting?!