That Questionnaire Again

I wrote a few days ago about the questionnaire I received asking about the impact of autism on my family and my health and stress levels, and also about the impact (benefit) the NAS befriending service is having.

I've since spoken to the NAS employee who organised the study. She's hoping they will be able to show that there is a real need for these services, and totally agrees that we have a responsibility not to misrepresent autism. I also had a prompt e-mail response from the research team at Queen's University, and have had permission to quote from it.

The inference that by asking about “need” across a range of dimensions we were suggesting that all families of children with autism have a wholly negative experience was certainly not intended. As you will have seen, all questions (about positive and negative outcomes) invite participants to either agree or disagree. Thus varying experiences are accommodated.

This said, I do agree that it would be preferable to have instruments with a better balance of negative and positive statements with which to agree or disagree. This was one consideration when the research was being passed from an ethics point of view. However, if our research was to have any validity and scientific credibility we had to use standardised questionnaires which will allow us to make sense of participant responses with respect to population norms and data pertaining to parents of children
with other disabilities, which it has already been used for. Most fundamentally, this research is about establishing and highlighting levels of need out there, in order that a credible case may be made for resources.

I'm very grateful that they both took the time to reply to me and explain the reason for using these particular questionnaires. I know nothing about psychology and had been concerned that this questionnaire might in itself, exacerbate feelings of despair. Although you can disagree with the statements, the fact that the vast majority of them are negative, would appear to invite a more damning response.

We know the attitude that is very prevalent in most media reporting of autism and many autism charities (not the NAS or Autism NI), is that autism is always a devastating disorder that prevents children from ever having a happy or fulfilling life. For example, SPEAC based here in NI campaigns for ABA as the best therapy for autistic children, and on their homepage you find the quote, (emphasis theirs)

Autism tries to rob me of a life, of friendship, of caring, of showing interest, of using my intelligence, of being affected. It tries to bury me alive... I will control Autism... It will not control me" Williams, 1994

I'm aware of so much negativity about autism. This same negativity really affected me when I 1st learnt of my son's diagnosis. I did feel devastated, I did worry that our family life would be ripped apart, and mainly because that is what I read everywhere I looked, that seemed to be the expectation. It becomes a self fulfilling prophesy. But thankfully, I found some other writings, by autistic individuals and by parents who were able to accept their child's condition while striving to do their best for them.

I truly hope that the befriender service will gain the funding it needs and deserves. There is nothing like enough funding to match the demand. I know that many charities are competing for funds, and often shock tactics are used to try to emphasise the need for donations. I hope that this campaign is successful and ethical.