Today I received a letter from NAS NI, asking me, as a user of their befriending scheme, to fill-in a questionnaire about the impact of ASD on family life, and a Parental Stress Index. They are funding the research, to be carried out at Queen's University Belfast, to assess the influence of the befriending scheme, and to 'highlight important issues to prospective funders.'
Now, I'm not too happy with this questionnaire. It's very much skewed towards showing what a horrible thing it is to be saddled with an autistic child. Every single question on the Parental Stress Index, is about negative traits, feelings and expectations. For example;
I find myself giving up more of my life than I expected to meet my children's needs.
Since having this child, I have been unable to do new and different things.
My child is not able to do as much as I expected.
The Family Impact Questionnaire is much the same (emphasis mine), eg;
Nobody understands the burden I carry.
Fatigue is a problem for me because of my child's condition.
This condition has placed a strain on the relationship between me and my partner.
Now to be fair, some questions (5 out of a total of 65 questions counting both parts of the questionnaire) ask about the positive effects of having an autistic child, in terms of how it may have brought the family closer, and 'learning to manage my child's condition has made me feel better about myself.'
There are no questions about the benefits of the child's autism, as being a lovable, quirky and integral part of your child. The only good thing that's possible, as presented here, is a sort of 'strength through adversity' effect.
I think these sort of questionnaires, can shape how someone feels about things. If the only options on offer, are devastation and despair and problems, you could have a more negative attitude than you otherwise would. I wonder if this questionnaire would ever be considered appropriate for the parents of children with other disabilities, like Down Syndrome or Cerebral Palsy.
I'm not saying that having an autistic child is all sunshine and roses; it's hard work at times, can be frustrating, difficult, tiring. Thankfully, we don't have to deal with the most common case of stress for autism parents; dealing with a failing education system, since I'm taking care of that at home. I'm not having to do the fight for access and services that many must do; not yet anyway. The only thing that has caused me trouble from 'the system' lately, was applying for Disability Benefits, which is an unwieldy and flawed process in need of a serious overhaul.
But I object to the way this questionnaire presents my autistic child as being the likely source of all or most of my problems. And that just isn't so.
I haven't decided what to do about this. I won't fill it in, but I think I will write to the NAS to explain my feelings. I have recently joined this organisation, because it mostly is working as a force for good, and I know some really good people who are helping to make it even better.
Edit: Estee has a great post up about this type of thing: Good Practice in Representing Autism