21 Feb 2007

The Burden I Carry?

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


Maddy said...

oooo you had me worried for a minute there with that title!
I agree whole heartedly. Did they have an extra box at the bottom for 'comments or other'? Might have been the chance to attach an addendum of positives! Say 1 - 100 to counteract the 65.

Sharon McDaid said...

There is space to add comments, and one can disagree with the negative statements. But the tone of the thing is so negative and potentially damaging. I'm surprised, given its link to the NAS.

I've added a question mark to my title; it did appear to be quite worrying!

abfh said...

I hope you'll send this essay to the NAS, just as it is. It's very well written and makes your points clearly -- there's no need to compose another letter.

I'd suggest including the link to this post, so that they know their questionnaire is being discussed by bloggers. That might make them take your concerns more seriously.

Send them Estee's post too...

Anonymous said...

Hi there. Hopefully I can shed a bit of light from a psychology point of view. The PSI (if its the one I'm thinking of) is a general stress index which can be given to any parent of any child not just those with special needs (or ASD specifically). I've actually chosen not to use it in the past as it doesn't capture the unique experience of parenting a child with ASD. It is widely used in research however & is very well standardised which is possibly why they've chosen it. I'm not familiar with the other measure. I agree that these sorts of questionnaires tend to skew things to the negative and there should be an equal spread of postive & negative statements to agree of disagree with.

Sharon McDaid said...

Thanks Abfh; I will send them what I've written.

Thanks also Helen for your comment. I did think the PSI and some, or all, of the other forms, were composed some time ago by clinical psychologists.

In total there is a PSI, a Family Impact questionnaire, 30 questions about the child's temper and behaviour, a parental health questionnaire (Goldberg, '78; the only one with a reference) and an Impact of Befriending questionnaire.

I understand that these may be widely used and well standardised. I may be over-reacting (at least one person thinks so!). But I agree with Helen that this is skewed to the negative, even though you DO have the option to disagree with the negative statements.

To be quite honest; if I was to go back to when I had just learnt that my incredibly fussy, high-need toddler was actually autistic, and to soon after receive all these questionnaires; I'd have taken to my bed for a week in tears. They give an expectation that your life is over, your child is irreparably damaged, his siblings will suffer, your marriage is in jeopardy, and all because of the autism!

The Jedi Family of Blogs said...

Gorgeous, photo, btw! :)

I don't think you're over-reacting at all. The negative spin really can affect how people feel about themselves, so I think you have a valid concern. I hope they respond (positively) to what you've said!

Anonymous said...

If I can get access to a printer tomorrow I will hand this post over to the NAS personally.
I am in a hotel room in London paying far too much for wi-fi access. I will be at NAS HQ tomorrow - looks at watch - I mean this morning. goodnight!

Sharon McDaid said...

Thanks Mike; I'd appreciate that.
Hope you managed to get some sleep instead of living it large in a London hotel ;-)

Bree said...

I have a friend who has 2 children. The youngest has cerebral palsy, autism and a genetic condition which I dont know the name of. Basically, at 9 years old he behaves like a 1 year old. He is absoultely adorable, lovable, happy, energetic, carefree and just a joy to be around. But his Mum doesnt seem to see it. She sounds just like that questionaire. She doesnt see the joy in her son at all. She talks all the time about the burden she carries, how unfair it all is, how sad and disappointed she is. She still seems convinced that one day he will grow up to be just like everyone else. Whilst she is so wrapped up in this self-pity, her other child fends for herself and gets little to no time or attention. It's made me sad for years seeing this. I've never been able to understand how she cant see the positives in this little boy. Maybe she has had years of negative expectations forced onto her by the medical profession. Who knows? But I know one thing for sure, she would have had something to say for everyone of those negative comments on that questionaire, which is very sad.

Sharon McDaid said...

Bree that is so sad. I wouldn't be surprised if that woman had been exposed to a lot of negativity over the years. What a shame for her family, and for herself.

Estee Klar-Wolfond said...

Thank you for this. I will use it in our submission to government.

Any more -- send to The Autism Acceptance Project or estee@wolfond.com.

Thank you.