The Stress of Autism

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runawaybunny

Guest
The Stress of Autism - Well Blog -New York Times

Raising a child with any developmental disability or behavior problem is difficult. But is there something uniquely stressful about autism? That is the question researchers at the University of Washington Autism Center tried to answer in a study of mothers of children with developmental disabilities.
 
Cheryl,

Thanks for posting this. From personal experience raising difficult child 1 and difficult child 2, I agree that behavior problems are at the top of the list as far as stress is concerned. When they were young, there were many days I felt like my life was over - Like I was just doing time in a prison cell. SFR
 

trinityroyal

Well-Known Member
What an interesting article.

SFR, I totally agree with you that the behavioural issues are the most stressful.
I think helping a child manage the physical tasks of daily living (brushing teeth, dressing, bathing, etc.) is just something that we as parents know how to do. We do it for them as babies, so adapting to providing the same type of care for older children is not too much of a stretch, emotionally speaking.

I think that the things that I find most stressful as a parent to children on the spectrum are:
- the randomness of some of the behaviour. Even when you know your children's triggers really well, new elements come up all the time that will trigger a behaviour episode. When kids make transitions to different stages of life, sometimes EVERYTHING changes, and you have to start from scratch again figuring everything out.

- the lack of empathy and understanding, the self-centeredness, the narcissism. It can really drain you when you're sacrificing and sacrificing for someone, and from their perspective it's all about them them and them, and they just expect whatever herculean effort you've put in for them as their due and their right. It's enough to bring me to my knees

- getting past the expectation that chronological age has a bearing on developmental age. Sometimes I find it difficult to remember that my 19-year-old, 6 ft 4, full-grown man still has so many elements of little boy inside him. It's hard to reconcile the very grown-up behaviour he can sometimes display with the astonishing immaturity he can present with not 5 minutes later. It really is a mind-trip, and sometimes it's so hard to adjust on the fly.

I think the hardest thing is that, being a Spectrum-Girl myself, I expect myself to be able to empathize and understand a lot better than I do. But difficult child and I are so different in our manifestations of autism traits that sometimes my internal understanding of the condition serves to get in the way of my ability to understand difficult child. In some cases it makes me less patient with him, because I expect him to have the same strengths and deficits that I have.

If you've ever read the book by Temple Grandin and Sean Barron about Understanding Social Relationships (can't remember the exact title off-hand), it clearly identifies how difficult child and I differ (I'm much more like Temple, he's much more like Sean), and how that creates a barrier for us.

Trinity
 
Trinity,

You've expressed my feelings much, much better than I could have - For me, the thing that gets to me the most is the belief that the entire world must revolve around them. What you said is so true!!!

"the lack of empathy and understanding, the self-centeredness, the narcissism. It can really drain you when you're sacrificing and sacrificing for someone, and from their perspective it's all about them them and them, and they just expect whatever herculean effort you've put in for them as their due and their right. It's enough to bring me to my knees."

It is this total self-centeredness that drives me to the edge - Sometimes I have a difficult time just being in the same room as one of my difficult children because of their total disregard for anyone other than themselves. It's absolutely maddening!!!

Just thinking about it, gets me angry... No matter how hard I try not to let it get to me, it does. SFR
 
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