Challenges and needed supports: Perspectives from people with Asperger’s and other ASDs.

A review of:Muller, E., Schuler, A., Yates, G.B. (2008). Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism, 12(2), 173-190. DOI: 10.1177/1362361307086664

This is an excellent example of research that makes a commendable effort to breach the gap between the Autism and research communities. This succinct study examined the reported challenges and supports needed as reported by people with Asperger’s syndrome or high functioning autism (HFA). The study included 18 people with ASDs (15 with a diagnosis of Asperger’s, 2 with HFA, and 1 with PDD-NOS). The participants were over 18 years old with normative intellectual functioning. The participants were interviewed using a semi-structured clinical interview that was created with the input from other people with ASDs, parents, and clinicians. The responses to the interviews were analyzed with a focus on two specific domains: reported positive and negative social experiences, and recommendations for effective social support services and strategies for improving social connectedness. In regards to social experiences, 6 common themes were identified: intense isolation, difficulty initiating social interactions, challenges relating to communication, longing for intimacy and social connectedness, desire to contribute to one’s community, and effort to develop greater social/self-awareness. In regards to recommendations for social support services and strategies, 4 common themes were noted: external supports (structured social activities, small groups and dyads, etc), communication supports (assistance with alternative forms of communication such as email and other web based applications, etc), self-initiated support (physical and outdoor activities, spirituality, etc), and attitudinal supports (teaching of tolerance of differences, willingness to initiate social interactions, etc). The authors discussed how these findings “counter a number of culturally reinforced stereotypes about ASDs – particularly the characterization of individuals with ASDs as socially aloof, deliberately self-isolating, affectively flat, and lacking consciousness of their social skills deficits.” It is also important to note that this study was conducted with mostly people with Asperger’s syndrome. We have discussed in the past how one possible difference noted between people with Asperger’s vs. functioning autism is in regards to a need for social connectedness. Thus, although this research is an excellent example of the type of inclusive research that is needed, I believe it is important that future research examine how social experiences and reported effective support systems may differ between people with Asperger’s and people with HFA, so that support systems can be better designed to meet the specific needs of these communities.

Executive dysfunction in Adults with ASDs.

A review of: Barnard, L., Muldoon, K., Hasan, R., O'Brien, G., Stewart, M. (2008). Profiling executive dysfunction in adults with autism and comorbid learning disability. Autism, 12(2), 125-141. DOI: 10.1177/1362361307088486


In this well designed study, the authors first reviewed the basic theory of Executive Function. Executive function (EF) refers to neurocognitive processes associated with the planning and implementation of actions. Some researchers have proposed that autism is directly linked to anomalies in EF. Deficits EF lead to difficulty in the planning and initiation of action, inhibition of inappropriate responses, and difficulty with strategy monitoring. One issue in assessing EF in children and adults with autism is that deficits in EF are also present in other developmental problems, such as learning disabilities, which are common in people with autism. In order to control for this possible confound, the authors compared 20 adults with autism and co-morbid learning disability against 23 adults with learning disability only. These two groups were matched for age and IQ. The authors compared their performance on a battery of neuropsychological tests of EF*. The authors found that although the group with autism performed consistently worse than the group with learning disabilities on all tasks, none of these differences reached statistical significance. The authors then created a composite score of different domains of EF and found significant differences between the groups. Specifically, the group with Autism had significantly lower scores on ‘working memory’ and ‘planning’. A few specific factors about this study are worth mentioning. The study was conducted with adults with intellectual impairment (Average IQ = 67), thus the findings may not generalize to people within the normative range of intellectual functioning. The sample size was also extremely small, which affects the ability to find statistically significant differences. Finally the authors discussed one interesting point regarding "causality". It is difficult, if not impossible, to understand the direction of the causal factors at play. Is executive functioning one contributing factor to autism (a possible cause), or is it simply a byproduct of other impairments related to autism (caused by)?

*For those interested in the specific tasks used, these included the: Tower of London, Mazes, the Knock and Tap task, Verbal Conflict, WCST, COWA, Non-verbal Fluency, and the WMS-III.

More evidence against the Leaky Gut theory of Autism?

A review of: Cass, H., Gringras, P., March, J., McKendrick, I., O'Hare, A.E., Owen, L., Pollin, C. (2008). Absence of urinary opioid peptides in children with Autism. Archives of Disease in Childhood DOI: 10.1136/adc.2006.114389

Should parents of children with autism stop purchasing commercially available test of opioid-peptides?

In this previous POST I reviewed a simple study that examined the intestinal system of children with autism in order to test specific hypotheses related to the “Leaky Gut” theory. As is mentioned before, this theory suggests that children with autism have increased permeability of their intestinal track leading to faster absorption of peptides which could disrupt neural development during the early stages of life. However, the Robertson et al. (2008) article did not find evidence that would support the Leaky Gut theory. In this similar study, the authors compared 68 males with autism between 4 and 11 years of age to 202 typically developing males of similar ages. Autism was diagnosed via ADI-R based on ICD-10 diagnostic criteria. Only 6 of the children with autism were on special diets (gluten free or gluten and casein free). The researchers compared the levels of putative opioid peptides in the urine of all participating children. There was no significant difference between the peptide levels of children with autism when compared to typically developing children. The authors concluded that, given this apparent normative absorption and processing of peptides in children with autism, the presence of high opioid -peptides should not be used as a marker for autism or as an estimate of the possible effectiveness of gluten free diets. The researchers also indicated that previous studies showing high levels of opioid peptides in children with autism prior to the start of a gluten free diet (See for example Knivsberg et al 2002), have not been replicated mostly because of possible inadequate methods used in previous studies. The authors feel strongly that “Children with autism should not be subjected to investigation of urinary opioid peptides or their parents to the expense of the assays which are still widely advertised on the internet by commercial laboratories around the world”.

UPDATE: After I reviewed this study I received several emails from parents with different perspectives on the Gluten Free diet issue. I want to briefly note two things. The data from the Cass article do not directly address the issue of effectiveness of the gluten free diets or the issue of the use of peptide tests to predict treatment effectiveness (despite their strong statement against such tests). Their data simply fails to find support for one of the underlying assumptions of the Leaky Gut theory.

Someone also pointed me to what seems to be the only clinical controlled study of these treatments:

Elder JH, Shankar M, Shuster J, Theriaque D, Burns S, Sherrill L.( 2006) The gluten-free, casein-free diet in autism: results of a preliminary double blind clinical trial. J Autism Dev Disord. 36(3):413-20.

In this study, the authors also failed to find statistical evidence for improvement in children exposed to the gluten free diet for 12 weeks. However, this 2006 study was very preliminary with an extremely small sample size. There is no doubt that additional research is needed to help clarify the possible effectiveness of these diets.