Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey

13 May

I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.

For those who have read this blog for some time, it will come as no surprise that I have a keen interest in autism research. In my writing I have often analyzed data from public datasets like the California Department of Developmental Services data. A while back there was a lot of attention placed on the National Survey of Children’s Health. The big news was the announcement of an autism prevalence of about 1%, and a notion that these data pointed to a very high “recovery” rate from autism. I took a look at the recovery rate question. I also looked for a what other information we might gather from the survey, including debunking the idea that 80% of parents of autistic kids divorce.

One of the big news stories from last year’s IMFAR was the announcement that autism does not result in a high divorce rate. The team presenting at IMFAR were much more rigorous in their analysis than the report of raw data that I did. But I have to say that when I read the IMFAR abstract I thought, good to see that team make this fact known. I also thought to myself: I’m asking the right questions of the data I am analyzing.

I also know how to give a presentation at a conference, having done so many times in the past. But conferences don’t let people present using a pseudonym. This was somewhat frustrating, as I have been looking at data from the National Household Education Surveys Program (NHES) and found some very interesting results. Once people took it upon themselves to out me, that was no longer an obstacle, so I submitted an abstract for IMFAR 2011:

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
M. J. Carey
Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.

Objectives:
1. Compare educational placements and perceived educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder. Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

The crude administrative prevalence is quite high at 1 in 65 (1.5%). Notably higher than the 1% value in the last CDC prevalence estimate and the estimate from the NSCH from the same year. As you can see, this is not where I placed the emphasis in this abstract.

What struck me when I looked at these data was the evidence for how broad the spectrum is. Most students are on an IEP. Students with parent-reported autism are in non-graded environments more, and are not getting as high grades. But, there are also a large fraction whose grades are high and there is a small, but notable, group whose parents have expectations of college and beyond.

One major question is how realistic are these parent expectations? How well do these students really do on transition out of school? Another presentation at IMFAR looks into that. This is by Prof. Shattuck’s group at Washington University at St. Louis. To be very clear, I had nothing to do with this study and didn’t even know it was in the works. Prof. Shattuck’s work is far more rigorous than the abstract I submitted, but I’m encouraged to be asking good questions at least. Here is his abstract:

110.096 75 The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD. J. L. Taylor*1 and P. Shattuck2, (1)Vanderbilt Kennedy Center, (2)Washington University

Background: There is considerable variability in post-high school outcomes of young adults with ASD. Underemployment is common, and many young adults continuing living with their parents or in supported settings after leaving high school. Research examining predictors of independence among adults with ASD has focused on characteristics of the adult that are difficult to change, such as early language or IQ. The present study focused on one malleable factor that is related to adult outcomes in typically developing individuals: parental expectations.

Objectives: This study had two objectives: 1) to describe parents’ expectations for the post-high school educational, occupational, and residential outcomes of their son or daughter with ASD; and 2) to determine the correspondence between parental expectations and outcomes.

Methods: This study used data from waves 1 and 4 of the National Longitudinal Transition Study 2 (NLTS2), a nationally representative, 10-year longitudinal survey of adolescents in special education. Participants for this study included 390 parents whose son or daughter had received a diagnosis of ASD through the school system and had exited high school by wave 4.
Parental expectations were assessed at wave 1, while youth were still in high school, with the following questions: “How likely do you think it is that (youth) will:” 1.) “graduate from a 4-year college;” 2.) “eventually will get a paid job;” 3.) “eventually live away from home on (his/her) own without supervision.” The son or daughter’s educational activities, current living arrangement, and work status were measured at wave 4. Severity of impairment (conversational ability, social communication, mental skills) was statistically controlled in all analyses.

Results: One-quarter (27%) of parents expected that their son or daughter would graduate from a 4-year college, 88% expected that their son or daughter would work for pay, and one-half expected that he or she would live outside the home without supports. Family income was not independently related to parents’ expectations that their son or daughter would attain a 4-year degree or live outside of the home without supports. Families with higher incomes were more likely to expect that their son or daughter would work for pay, B=.08, p.10. Parental expectations did, however, predict the likelihood that youth would be working for pay, OR=6.05, p<.01.

Conclusions: For many parents of youth with ASD, expectations for their son or daughter’s post-high school living arrangements and education may not be realized. Expectations for paid employment, however, may increase the likelihood of post-high school employment.

Again, for emphasis: “Only 39% of youth whose parents said they “definitely would” graduate from a 4-year college were currently enrolled or had graduated; 45% of youth whose parents said the “definitely would” live away from home independently were currently doing so”.

The question is: how can we achieve the goal where more autistics make the transition from school to adulthood and employment or college? I don’t expect all to make that transition, but I feel strongly that we can do a lot better as a society than we are now.

note–I originally posted this last month when the Abstracts for IMFAR 2011 were first put online. Unfortunately, they were online by mistake. There was an embargo still in place. I pull the article then and am re posting it now that the embargo is lifted. Friday at 9am, I will be standing in front of the poster.

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6 Responses to “Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey”

  1. rose May 13, 2011 at 14:32 #

    Do you think this “new wave” of “autists” might have been previously diagnosed as LD or ADHD or Dyslexia? Much like the exact increase in Autism and lowering of mental disabilities?

    My son won’t graduate from high school, may~ get his GED, but definitely will go to tech and take mechanics/electrical/welding, what he has always wanted to do, anyhow. With my degree in Sped, I remember LD kids often being gifted in 1 area, mechanical, math, music, art. Sounds to me like my son is much like the “rummies” in my high school classes thiry-five years ago. New kids, new labels, same old trouble with school.

  2. sharon May 17, 2011 at 11:11 #

    @rose, not sure, but I imagine many girls/women were mis-diagnosed with personality and anxiety disorders.

  3. McD May 18, 2011 at 06:18 #

    Sullivan, I am a bit confused at one point: “Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%).”

    Maybe the US is different, but if a ‘C’ is an average pass, ‘B’ is good and ‘A’ is excellent (with + or – variations on that schema). Wouldn’t it be quite unusual to get that number of either autistic or typically developing kids getting mostly ‘A’s or ‘B’s.

    But I could have the wrong end of the stick if ‘B’ is ‘average’ in the US.

    Sort of reminds me of the probably mythical ‘statistic’ that 80% of people think they look younger than their age, or ‘better than average’.

  4. rose May 18, 2011 at 12:29 #

    College bound versus not makes me even more suspicious that autism is the new learning disabilities.

    Admit it. School is very hard for our square pegs. Why would they want to continue the torture? I say this as I prepare my son to take the Compass test for placement in the tech college he will be attending soon. We homeschooled to keep him out of a “behaviorally disordered” classroom where his behavior was much more scrutinized than kids without labels. He had to have ritalin to go to school, we have been on a chemical free vacation for 3 years. There you go, Ritalin, another indicator of LD.

    How do we make that transition? I’m going through that right now…We tried a sample Compass test (similar to ACT,but easier, same company puts it out) and it took Ben 3 hours to complete less than half of it. He is given 3 hours to complete the whole test at the school. What am I going to do? I’ve considered doping him up before he goes. I’ve considered asking for the same testing accomodations he recieved in school (untimed). I’ve considered letting him fail, because without drugs or accomodation, that’s realistic.

    I asked Ben if he would be against fighting for accomodations.

    “Not if it helps.” His sensible meter seems to be intact.

    He may not be able to make it past the basic entry test to enter college. It kinda woke me up. What other obstacles will we face?

  5. rose May 18, 2011 at 12:38 #

    I’ve got another clue, having homeschooled…I’m guessing, but the “label free zone” of homeschool houses many, many kids whose parents refuse to label, or who can’t afford special schooling. I wonder if more of those kids make it on to college. It’s certainly uppermost in the parents’ minds.

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