Monday, February 14, 2011

Curebie Attitudes and Coping in Mothers of Autistic Kids

A long time ago, I wrote a survey for parents of autistic kids to fill out. I got 16 respondents, all mothers. Back then, I didn't have access to SPSS, but I did some stats on my own. Unfortunately, the results were lost when my website disappeared.

Anyway, I've dug out the data again, and now I'm running it through SPSS to test various hypotheses.

Firstly, a basic description of my data:
  • some demographic questions (where do you live, what's your ethnicity, what's your religion, what other parents does your child have, how old is your child, what's their diagnoses, when were they diagnosed, do you have any other kids, are they disabled, do you think you're on the spectrum, etc)
  • if they suspected their child's diagnosis, why, how good their child's verbal skills were, whether their child had a lot of behavior problems, and what therapies their child had gotten and how helpful they were
  • some qualitative questions about how they were affected by the child's diagnosis, how they thought the child perceived their own condition, how they wanted their child to perceive their condition, and what they thought caused autism
  • Likert-scale questions about self-esteem (borrowed from some old study that I can't seem to find now)
  • Likert-scale questions about parental stress (a reworded version of some questionnaire where every question started with 'I need' or 'my family needs')*, scaled so higher scores represent lower stress
  • Likert-scale questions about parental autistic traits
  • Likert-scale questions about the DSM-IV symptoms of depression
  • Likert-scale questions about curebie/neurodiversity attitudes towards autism (this one was the only one not adapted from somewhere else)
I'll do other analyses at other times. But right now, I'll focus on my curebie/neurodiversity questionnaire and how it correlates with parental well-being (self-esteem, depression and stress).

Scale Reliability

If a scale is measuring a single underlying construct, then the items should be correlated with each other. The test for inter-item correlation in a scale is called 'Cronbach's alpha', and the higher this number is, the better the scale is.

I ran Cronbach's alpha on the 17 questions in this scale, and it spat out a value of .894 (the score ranges from 0-1, so this is very good). I noticed that it had excluded 10 cases based on them not having data for all the questions, so I removed one question ('my child's behavior makes sense to me') which I'd added partway through the study and therefore didn't have full data on. The next Cronbach's alpha was .802, and all 16 cases were included in that analysis.

Then I ran bivariate correlations to see if the questions were correlated with the summed score (with higher scores meaning neurodiversity attitudes, incidentally), and found the following for each question (* means p=<.005 and ** means p=<.001, reverse scored means that 'strongly disagree' counted higher than 'strongly agree'):
  • I feel despair when I think of my child's future (reverse-scored) -- .875**
  • If my child's autism is not cured, he/she will have to be institutionalized (reverse-scored) -- .560*
  • I often think my child would be better off dead (reverse-scored) -- .612* (note: all parents chose between strongly disagree and neutral on this question and the next one, none agreed)
  • I have seriously considered killing my child (reverse-scored) -- .468
  • I don't think there is anything good about autism (reverse-scored) -- .408
  • I would rather my child have leukemia than autism (reverse-scored) -- .562* (all parents chose 'disagree' or 'strongly disagree' on this question)
  • I get very sad when I see a typically developing child who is the same age as my child (reverse-scored) -- .693**
  • I think of my child as trapped inside autism (reverse-scored) -- .687**
  • I often feel like I have lost my child (reverse-scored) -- .532*
  • There is a conspiracy to keep parents from knowing the true cause and/or cure of autism (reverse-scored) -- .313
  • I worry that my child hasn't got enough therapy at a young enough age (reverse-scored) -- .666**
  • My child has a lot in common with me -- .619*
  • Autism is not a big part of who my child is (reverse-scored) -- -.312
  • Autism is not really a bad thing, it just means you are different from the norm -- .484
  • I think of myself as a warrior fighting against autism on my child's behalf (reverse-scored) -- .575*
  • I think of myself as a warrior fighting against society (for example, the school system) on behalf of my child (reverse-scored) -- .555* (note: I originally planned this to be positively scored, but I noticed that it correlated extremely strongly with 'war on autism')
It's a bit disappointing how many of the questions weren't significantly correlated with the total score, though that could've been due to small sample size.

However, the one question that actually showed a (non-significant) negative correlation, 'autism is not a big part of who my child is' (reverse-scored), was interesting. Although many neurodiversity autistic self-advocates (myself included) argue that 'autism is part of who we are, not a condition we have', it seems like most parents who see autism as a big part of their child do not have a positive view of the condition. This question correlated significantly with despair at the child's future, expecting the child to be institutionalized, feeling like they'd lost their child and being at war with autism. So it seems like 'person-first' advocates might actually have a point - some parents seem to view autism as an engulfing monster that has taken over their child.

I could switch that question to being positively scored, or else reword it as something like 'you can't separate my child's autism from his/her basic personality' or 'if my child's autism were cured, he/she would be a different person', which might better tap the neurodiverse sense of autism as part of identity. Ideas for further research!

Curebie/Neurodiversity and Parental Well-Being

(Note: The self-esteem scale had a Cronbach's alpha of .835, the parental coping scale had an alpha of .678, and the depression scale had an alpha of .834.)

I ran bivariate correlations between curebie/neurodiversity, depression, parental coping and self-esteem. The curebie/neurodiversity questionnaire was strongly negatively correlated with depression (-.603, p=.023), positively correlated with parental coping (.830, p<.001) and uncorrelated with self-esteem (.392, p=.148). Depression was also negatively correlated with self-esteem (-.694, p=.004), which is consistent with pretty much any study into depression and self-esteem. But neither depression nor self-esteem were correlated with parental coping.

Given that my depression question were grabbed from the DSM-IV, I was interested to see how many met criteria for a major depressive episode. The cut-off is 5 or more, including depressed mood and/or loss of interest (criteria 1 and 2). I decided to take agree or strongly agree as indicating presence of a symptom. (Note: Diagnosis-by-questionnaire is not an accepted clinical diagnosis, but it is commonly used in the literature to approximate a diagnosis.)

Based on this criteria, 4 parents were depressed and 10 weren't depressed (2 didn't answer all the depression questions and so were excluded). This means 29% were depressed.

Then I ran a T-test on neurodiversity/curebie, self-esteem and parental coping between depressed and non-depressed parents. Self-esteem scores were the only significant difference between the two groups, at (p=.013). This might be due to small sample sizes (4 is a very small number for statistical analyses).

* In retrospect, I shouldn't have reworded the questions, because even slight changes in wording can affect people's responses.


Blogger ......I'm Anonymous said...

The title of this post is extremely offensive and shows little understanding of the severity levels of autism.

It appears to me you left out the most important questions of all 1) severity level of the child in question, 2) amount of family support, 3) amount of community support, 4) amount of educational support and 5) respite care.

How does this type of autism figure in your questions and the answers you received?

9:39 AM  
Blogger Ettina said...

How is it offensive? Are you referring to my use of the word 'curebie'? I have heard some people object to that term. If you have an alternative term for that perspective on autism, please, let me know so I can use it instead.

Regarding severity of autism, my sample was across the full range. I'm planning to post another analysis seeing if the four areas I tested here vary by child's diagnosis (Asperger Syndrome, PDD NOS or Autism), child's level of verbal skills (normal, delayed but communicative, echolalic, very limited speech or nonverbal) and whether the parent indicated any significant behavior problems.

I don't know if parents of more severely affected kids are more likely to have a negative view of autism. I can think of examples of parents of kids at either severity extreme who hold either viewpoint.

Lastly, the 'parental stress' measure included your questions 2-5. It was assessing to what extent the parent felt that they were getting insufficient support in a variety of areas. I'm sorry I didn't make it more clear what that scale measured.

10:07 AM  
Blogger ......I'm Anonymous said...

I can tell you as a person with an ASD, I find the simple ad hominem "curebie" insulting. You can refer to parents as "subjects" in your study.

If you did a study on black people with certain outlooks based on their situation, would you call them N*&*Gs and the ones you agreed with as black people?

I don't know if parents of more severely affected kids are more likely to have a negative view of autism.

My guess is that you have never raised a child. Though its not a prerequisite for a study, it does help to shape useful questions.

10:22 AM  
Blogger Unknown said...

This comment has been removed by the author.

11:19 AM  
Blogger Ettina said...

OK, but not all of my subjects were what I call 'curebies'. So, what term do I use for the subset of subjects who didn't support the neurodiversity viewpoint?

11:21 AM  
Blogger ......I'm Anonymous said...

So, what term do I use for the subset of subjects who didn't support the neurodiversity viewpoint?

How about subjects? Why is there a need to give them a name or try to "group" people into some sort of derogatory way?

2:59 PM  
Blogger Ettina said...

Well, actually, I wasn't grouping people, if you notice, but attitudes. Each subject was given a score on a continuous scale from curebie to neurodiversity attitudes. And I don't see how I was being derogatory about it. My goal with this research is to understand why some people's beliefs about autism are so different from mine.

8:30 AM  
Blogger Maya M said...

I think that in formal texts "curebie" could be replaced with "pro-cure".

5:16 AM  

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