There was a moderately interesting report on the New York Times Well Blog about mothers of autistic children having more stress than mothers of children with other types of developmental disabilities. The reader comments, however, are utterly fascinating. I wasn't at all surprised by most of them, but wanted to ask the question here. What causes the most stress relating specifically to autism for you?
Teachers, aides, therapists, other relatives...please weigh in on this issue. Your perspective is ALWAYS welcome here.
BTW, while I find this study and its discussion fascinating and important, I'd honestly prefer research dollars to be spent on finding effective treatment, better support for adults with autism, and better understanding of the causes of autism. Those seem like higher priorities to me. Just sayin'....
5 comments:
I have the most autism related stress from CPS visits. They come at least once a year and are very disruptive. There is not room in our already overfull schedule to deal with meetings and preparations for inspections. I know these people want to help, but they are never able to help in any way. The other most significant stressor for me is lack of sleep. One way or another, children with autism are going to cause sleep deprivation.
I would have to say the doctor's cause me the most stress, as they aren't willing or don't want to or just don't care about what I am saying to them. They seem to only go by what they see in front of them, and they don't listen to the "experts" of our kids US!
The other stressor is my folks, they are sort of on board but not really...they tell us it is our parenting. If we used a forceful hand he will be fine...is what they say...we know better!
Anyways, that is my two cents for now...thanks for asking that question :)!
Inky Hugs,
Catherine
www.mystampinggrounds.blogspot.com
The things that stress me most are the lack of sleep, Liam's health (Thanks for the advice)and the general "stuff" surrounding the autism. Although I know the latter is not unique to autism.
For example, Liam goes to school next year so there are about 6 different assessments and reports that need to be done to prove he is on the spectrum, not deaf (as if they have to be mutually exclusive), his developmental levels, IQ tests that require verbal skills etc.
For us one of the most stressful times are the yearly testings. Others are dealing with the day to day things. His 'meltdowns' are still very bad when he has them. I have called home twice now from work in the last month due to them.
Although they are less than what they use to be.
And of course they worries of what he will be like as an adult. I worry about that now as he just turned 13. I do stress about what will happen to him when DH and I are not here anymore.
It is always strssful when he goes to school also. Every morning I pray he has a good day.
As a special education teacher, the number one thing that causes the most stress for me is the other adults' unwillingness to understand that some students just simply need to continue to work on a concept in order to understand it completely. It seems that so much curriculum is crammed into a school year that there often is not enough time for a struggling student to "really get it" before it's time to move on. Over the years I've worked with general education teachers who demand that they complete the same assignments as everyone else, and others who are glad for me to modify curriculum so they can be successful. The number two stressor is the fact that I often have so many students on my caseload that I feel I can't give students with autism the best support in the general education classroom.
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