Wednesday, February 16, 2011

Curebie Attitudes in Mothers and Autism Severity

Neurodiversity advocates always get this particular comment: 'But what about severe autism? How could you see it as part of diversity?' In my research into correlates of curebie vs neurodiversity attitudes in mothers of autistic kids, this raises an obvious question - how does the child's severity of autism interact with the mother's perspective on autism?

I focused more on the parent than the child in my research, but I did ask three questions that could be considered markers of autism severity - child's diagnosis, child's level of verbal skills, and whether the child had 'significant behavior problems'.

Child's Diagnosis

One mother didn't report the child's specific diagnosis. Of the others, 4 (27%) of the children had Asperger Syndrome, 5 (33%) had PDD NOS, and 6 (40%) had Autism.

I ran an ANOVA by diagnosis for curebie/neurodiversity, self-esteem, depression and parental stress. Only curebie/neurodiversity correlated with the child's diagnosis, at a significance level of .034. Parental stress was almost significant at .058.

The post-hoc tests revealed a significant difference between Asperger Syndrome and Autism - parents of Asperger Syndrome children were more likely to endorse a neurodiversity viewpoint than parents of children diagnosed with Autism. PDD NOS did not significantly differ from either group, they appeared to be intermediate between both groups.

So, this would seem to support the hypothesis that parents of more severely-affected children had more curebie attitudes.

Verbal Skills

I had the mothers rate their child's verbal skills on a five-point scale - normal, delayed but communicative, echolalic, limited speech (eg single words) or nonverbal.

When I first ran the ANOVA, it failed to perform any post-hoc tests due to insufficient sample size in at least one group. On closer examination, I realized only one child was rated as 'limited speech'. This child with 'limited speech' was 2 year 8 months old, the youngest in the sample, suggesting that this child should be better considered 'delayed but communicative'. I lumped that child in with the nonverbal children and re-ran the ANOVA with four groups: normal speech (3 children), delayed communicative/limited speech (6 children), echolalic (5 children) and nonverbal (2 children).

The ANOVA failed to find any significant difference by verbal skills in parents' attitudes towards autism, self-esteem, depression or stress levels. None of the p values were anywhere close to significant, so this is probably not due to small sample size (though I can't be certain unless I redo this study with more subjects).

This is interesting, because it seems to contradict the results by child diagnosis. One of the biggest determinants of whether a child is diagnosed with Autism or Asperger Syndrome is their verbal skills. In the DSM-IV, Asperger Syndrome requires no significant delay in verbal skills. Autism doesn't technically require verbal delay, but it does require abnormalities in verbal communication, and verbal delay counts towards an autism diagnosis.

When I ran an ANOVA of the relationship between child's verbal skills and their diagnosis, the p-value was .085, which barely missed significance. The Asperger Syndrome kids included the child with 'limited speech', one echolalic child, and two with normal verbal skills; the PDD NOS kids included one echolalic kid, 4 delayed but communicative kids and one with normal verbal skills; and the Autism kids included 2 nonverbal, 3 echolalic and one delayed but communicative. So there was clearly a trend for poorer verbal skills in the more 'severe' diagnoses, but also a certain amount of within-group variability.

I split the file by child diagnosis and re-ran the ANOVA by verbal skills. The only significant finding was in the Autism group, where parental stress correlated with verbal skills. In order to run post-hoc tests on that, I had to lump the one 'delayed but communicative' kid in that group with the echolalic kids. However, when I did that, the significance disappeared. Not sure what that means. In any case, it's clear that when controlling for child's diagnosis, there was no relationship between their mothers' perspective on autism and the child's verbal skills.

This suggests that whatever it is about child's diagnosis that relates to their parents' perspective on their autism, it's not the child's verbal skills. Maybe the different conditions have different stereotypes associated with them, maybe their diagnosis reflects differences between the kids that I couldn't measure, or maybe the parents reported the child's diagnosis differently depending on their own perception. (For example, I've heard anecdotal reports of the same child receiving different autism spectrum diagnoses from different professionals. In such a case, the parent may be more inclined to believe the diagnosis that best reflects how they view the child.)

Significant Behavior Problems

The question on 'significant behavior problems' was an open-ended question where parents filled in a comment box. Each parent's response was analysed both to determine whether they said 'yes' or 'no' to the question, and which behaviors they reported.

It's important to keep in mind that this is a very subjective question - each mother likely had her own definition of 'significant behavior problems', and the availability heuristic could easily affect reports of behavior problems. So different responses could reflect actual differences in the children's behavior, differences in parental definitions of behavior problems, or differences in how easily the parent called to mind the child's behavior problems.

Two parents left this question blank. Of the remaining mothers, 10 (71%) answered yes and 4 (29%) answered no. Specific behaviors listed were mood problems in 8 children, aggression in 6 children, atypical behaviors (eg laughing out of sync with surroundings, pica) in 3 children, crying in 3 children and self-injury in 2 children.

I ran a T-test for behavior problems and each of the four parent variables. Self-esteem showed no significant associations. Depression had significantly higher variance in the 'no' group (p=.013) than the 'yes' group, but mean rates were no different. Both parental stress and curebie/neurodiversity attitudes correlated significantly with behavior problems - 'no' answers indicated more neurodiversity attitudes and lower stress.

This confirms previous research on parental stress in autism, such as Konstantareas & Homatidis (1989), who found that self-injury and irritability in autistic kids were the best predictors of their mothers' stress levels. This is generally interpreted as parents being stressed out by difficult children, though it's also possible that the parent's stress makes the child's behavior worsen - I know I often have a meltdown when my parents are already upset about something else.


Blogger ......I'm Anonymous said...

You're not really a serious person are you?

2:35 PM  
Blogger ......I'm Anonymous said...

I found this quote from you on your blog from 2007

This shirt describes very well my experience with mainstreaming (in my case unintended mainstreaming - they didn't realize I was disabled).

Perhaps part of your problem with understanding classic autism and why people feel differently about it is because you don't have any basis/history to understand it?

2:39 PM  
Blogger ......I'm Anonymous said...

I found some more.

You wrote in your introduction that you don't believe in curing autism, though we know you don't have classical autism, but were diagnosed with PTSD and PDD-NOS through repressed memories, a highly controversial way to diagnose. PDD-NOS is an ASD but it isn't Autism with the big letter A.

You further wrote: For example, a person who can't walk or talk and is at the cognitive level of a baby at 10 years old (which isn't autism but profound developmental delay)

That is a complete misunderstanding of autism. Autism is by its very definition a developmental delay. Its like saying the sky may be blue but that's not really blue at all.

So, I guess you're saying that people like me who were born with developmental delays, who have children with profound developmental delay and have real honest to god autism diagnosis, the kind of autism with the big letter A aren't really autistic, we're just stupid.

2:48 PM  
Blogger Ettina said...

Wow, you really badly misinterpreted my blog.

"though we know you don't have classical autism, but were diagnosed with PTSD and PDD-NOS through repressed memories, a highly controversial way to diagnose"

Neither of those were diagnosed through repressed memories. You can't diagnose autism spectrum conditions through repressed memories - I don't know where you possibly got that idea.

I was diagnosed with PTSD at the age of 6 because my foster brother confessed to sexually abusing me. When the police, after his confession, talked to me, I told them that both him and his sister did it. Back then, I remembered the abuse, but I later forgot it and have yet to recover any memories.

I was diagnosed with PDD NOS at 15 by a psychologist, based on his observation, my report of my own behavior, and my mother's report of my behavior. I wasn't diagnosed earlier, not because I didn't have autistic traits (in fact, some of my teachers recognized autistic traits in me) but because my parents refused to believe I had a disability.

"Autism is by its very definition a developmental delay."

No, it's a developmental abnormality. Autism can be present in individuals at any cognitive level. Most autistics show delays in specific areas, but often they aren't really like any age level (eg, no age group of typical kids speaks in monotone or engages in full-sentence echolalia). And some autistics show generalized developmental delays, in addition to their autism.

But it seems like you'd rather twist my words to mean whatever you like, instead of actually listen. And ironically, you're doing this on the posts where I'm showing my willingness to try to understand the other side, despite not agreeing with them.

9:01 AM  
Blogger Amanda Forest Vivian said...

you are so cool for doing this Ettina.

8:42 PM  
Blogger Amanda Forest Vivian said...

also, "...I'm Anonymous," I think Ettina may be using the term developmental delay to mean the same thing as intellectual disability which may be the reason for the confusion.

am I correct?

8:43 PM  
Blogger Ettina said...

Yes, in Canada that's the usual terminology.

8:30 AM  

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