Adolescents and Adults with Autism Spectrum Disorders (1?)

I’ve been reading and I have at this point almost finished Sexual Selection in Primates: New and Comparative Perspectives, an awesome book which I’ll certainly give five stars and most likely add to my goodreads favourites, yet now I find myself covering this borderline-lousy book instead. The reason why I’m doing that is simple: Kappeler & van Schaik’s book (the awesome one) is an oldfashioned paper book, which makes it a lot more work to blog than this one.

I’m not impressed with Volkmar et al.’s coverage, and I’m at the moment considering whether I should even finish it – thus the question mark in the parenthesis; if I don’t read any more of it, I’ll certainly not post another post about the book later. It is a rare thing for me to do, to stop reading a book once I’ve decided that it’s worth reading; I’ll often quite quickly get a sense of whether a book is worth reading or not, and I rarely give up on a book once I’m past the first 100 pages. I did not at any point think this book was awesome and I’ve throughout the book so far been somewhere between one and two stars on goodreads, but it’s one of very few books dealing with the topic covered so it’s not like there are a lot of alternatives out there, and this gave the authors some leeway they would not otherwise have had. The most recent chapter I read, on Pharmacotherapy of Behavioral Symptoms and Psychiatric Comorbidities in Adolescents and Adults with Autism Spectrum Disorders, however was very close to pushing me over the limit. Here are some sample quotes from that chapter:

“A case report described a 25-year-old male with Asperger’s disorder who was diagnosed with bipolar I disorder with psychotic features after exhibiting a period of hyperactive, irritable, and assaultive behavior, reduced need for sleep, and grandiose, persecutory delusions (Arora, Praharaj, Sarkhel, & Sinha, 2011). Symptoms of mania improved on a combination of clozapine 200 mg/day and haloperidol 20 mg/ day”

“Clozapine is an atypical antipsychotic that is limited in use due to an increased risk of agranulocytosis and potential to lower the seizure threshold. A case series in three individuals with autism, aged 15-, 17-, and 27-years-old, highlighted successful treatment with clozapine for the management of recurrent aggression toward self and others (Chen, Bedair, McKay, Bowers, & Mazure, 2001; Gobbi & Pulvirenti, 2001; Lambrey et al., 2010).”

“A case series examined this glutamate antagonist in the treatment of three individuals with autism and MR, aged 15–20 years (Wink, Erickson, Stigler, & McDougle, 2011). Dosages ranged from 100 to 200 mg/day. There were reductions in interfering repetitive behaviors in all three subjects.”

“There is one double-blind, placebo-controlled, crossover study of clonidine involving adolescents and adults in the treatment of “hyperarousal behaviors” associated with autism (Fankhauser, Karumanchi, German, Yates, & Karumanchi, 1992). […] This study examined nine males with autism, aged 5–33 years (mean age, 13 years) […] Transdermal clonidine resulted in significant clinical improvement on the Clinical Global Impression-Improvement (CGI-I) scale.”

“The majority of published research on the pharmacological treatment of comorbid psychiatric disorders is limited to case reports and a few open-label studies. […] Although case reports have found some pharmacologic treatment beneficial for psychiatric comorbidities in individuals with ASDs, double-blind, placebo-controlled studies are needed”

One of the authors of that chapter had multiple conflicts of interest which were disclosed towards the end of the chapter, as he’s apparently received research funds from six different pharmaceutical companies. In the chapter they cover studies involving three individuals and even single case stories like the one above (it’s far from the only one). I’m not sure those two observations are unrelated. I think if all you have is a case series involving 3 individuals it’s probably not necessary to include that stuff in a book like this; that sort of information is close to worthless (single case stories certainly are. That’s what we in other areas call ‘anecdotes’). Once you know that some of the randomized controlled trials in this field involve only 9 subjects, you also start becoming a lot less impressed with those. They make conclusions in that chapter which I would not have made based on the evidence they present. A really serious omission is also that polypharmacy is not even mentioned in the chapter, despite a substantial number of people taking more than one type of drug and despite the fact that we basically have no clue how this affects them (see Lubetsky et al. for more on this). This omission is so much more striking as the polypharmacy issue is actually brought up, or at least mentioned, already in the introductory chapter of the book, where the authors note that “Of those receiving medications [in one study of 480 Canadians from Ontario with ASD], over 80 % received more than one medication.”

One reason why I’ve been reading on is that occasionally there are some interesting data, but another reason is that this book probably provides a good illustration of how people working in this field thinks. They, incidentally much like the authors in Lubetsky et al., seem to think there’s no budget constraint – they worry about it to the extent that they’re not given money to spend, but they seem to have no notion of the existence of questions like: ‘but isn’t it simply insane to be spending that kind of money on this?’ They have  a lot of ideas about how you could improve outcomes, and I’m sure some of those ideas if implemented might improve outcomes – whether it would be ‘worth it’ is however a completely different question, a question they do not ask.

I have added some observations from the first half of the book below.

…

“adolescence and adulthood in ASD [autism spectrum disorder] remain rather poorly understood. Much of the research and clinical work has centered on young children and those of primary school age […] We now understand that ASD is an early-emerging, usually lifelong neurodevelopmental disorder that significantly impact social, communicative, cognitive, and adaptive skills and has a strong genetic basis […]. There is now an extensive literature of peer-reviewed, scientific papers focused on ASD, and multiple studies on adult outcome have been published (for a review, see Howlin, 2013). As Howlin notes, however, these focus almost exclusively on outcome in young adulthood and information on older individuals is limited […], with almost no research focused on aging […]. Of the studies focused on outcome, most have studied individuals with classic ASD, or “Kanner’s” autism and “outcome” is essentially confined largely to early adulthood. […] heterogeneity in both the disorder itself and in service delivery, render it a complicated landscape for the study of intervention and outcome […]. Changes in nomenclature and diagnostic taxonomy have also complicated interpretation of research over the years and of identification of older individuals on the autism spectrum […] The relationship between severity of early symptoms of autism and ultimate outcome remains unclear, with at least a few studies suggesting that the severity of social skills impairment is the most significant outcome predictor […]. This and many other questions regarding changes in outcome remain to be discovered. Past young adulthood the literature becomes quite sparse. In one review of autism, research studies conducted between 2000 and 2010 only 23 (of an estimated 11,000) were focused on adult services […] Despite the important limitations of the research literature, it does appear that on balance outcome has, and is continuing, to improve.”

“The data available suggest that most individuals as adults live with parents/family and that a minority is employed. […] Even for the most able adults, however, limitations in social interaction, in adaptive/daily life skills, and occupational status [are] striking, with nearly 60 % of cases [in the previously mentioned Canadian study] continuing to live with their families. About one third of [that] sample had had romantic relationships and in a few cases had been married (sometimes with offspring). Most of the sample reported major limitations in social connections (with many having one or fewer social encounters outside their living situation each month). […] Outcome studies have shown a wide range of variation in the number of individuals with autism who have left home to live independently, in a group home, or some supported living arrangement. A number of studies have shown that the majority of young adults continue to live at home with their parents. […] Even when adults with autism live outside the family, their families especially their mothers have extensive contact and involvement in their care. Kraus et al. (2005) reported that 50% of families visited their adult with autism at least weekly and an equal number of adults came weekly to visit at their mother’s home. […] This need for continued parental support crosses the entire spectrum of individuals with autism.”

“Recent reviews of outcomes for individuals with ASD through the National Longitudinal Transition Study-2 (NTLS2) have indicated that, as a group, individuals with ASD have low rates of employment, independent living, and lifelong friendships (Newman, Wagner, Cameto, & Knokey, 2009). This longitudinal study followed 11,000 transition-aged students with disabilities from 2001 to 2009. The age range of youth and young adults included in this study were between 13 and 26. This sample included 922 students with autism spectrum disorders. Outcomes recorded for this sample included the following findings […]: • 32 % of this sample attended post-secondary education of one type or another • Only 6 % achieved competitive employment • 21 % had no job or post-secondary education experiences at all • 80 % continued to live with their parents • 40 % reported having no friends”

“The relationship between typically developing siblings has been extensively studied; however, very few studies have been conducted in order to investigate the interactions and quality of relationship between siblings when one has autism. For a typically developing sibling, the influence of having a brother or sister with autism is associated with higher rates of behavioral and emotional concerns […] and fewer prosocial behaviors towards their sibling with autism in some studies […] Within the literature, higher levels of education of the typically developing sibling as well as living at a distance from their sibling with autism have negative consequences for their perceptions of the sibling bond”

“There is limited research on the spouses of individuals with ASD. With the increasing knowledge and identification of high functioning men and women, there is a growing awareness that a portion of adults with ASD do enter into long-term relationships with others […]. However, there is limited empirical data about the nature of these relationships. […] adolescents and adults with ASD have far fewer sexual experiences than their typically developing peers […] Nichols and Byers (2008) found that participants who were older and had fewer ASD symptoms reported better sexual functioning. Specifically, individuals with fewer ASD symptoms reported greater sexual satisfaction, sexual self-esteem, assertiveness, arousability, and desire. They also reported fewer sexual problems and less anxiety surrounding sexual issues. As such, a sizable population of individuals with ASD is capable of having a satisfying sex life.”

“An impairment in social interaction is a core symptom of ASD […] and can impact social communication, friendship-making, dating, relationship-building, as well as sexuality. These deficiencies can lead to a decrease in social relationships […], an increase in loneliness […], an increase in social isolation, and poor quality friendships […]. Furthermore, co-morbid diagnoses of other mental disorders are common among this population. Individuals with Asperger’s are 5.7 times more likely to develop symptoms of depression in comparison to the typically developing population (McHale, Dariotis, & Kauh, 2003; Stewart et al., 2006). The literature suggests that most individuals with ASDs show a desire for relationships, but experience loneliness because their difficulties with social skills often interfere with friendship formation […] in a study of “high-functioning” individuals with autism, more than 56% had never experienced a sexual relationship and only 25% had dated […] as a whole, studies repeatedly show that although individuals with ASD desire intimate relationships, few actually have them. […] [People] with ASD often lack the social skills knowledge and competence to appropriately pursue and engage in successful romantic relationships […]. For example, individuals with ASD have been known to naively behave in an intrusive manner with potential romantic partners, which may even be perceived as stalking behavior”

“Despite the pervasiveness of social deficits commonly experienced among individuals with ASD, social skills are comparatively much less studied than other aspects of ASD and research examining social skills interventions for adolescents and adults with ASD are especially rare. In a best evidence synthesis of 66 studies of social skills interventions for individuals with ASD published between 2001 and 2008, only three studies contained adolescent or adult participants […] Social deficits are typically a major source of impairment for individuals with ASD, regardless of cognitive or language ability […]. However, the considerable heterogeneity in the level of cognitive functioning and language ability among individuals with ASD may affect the presentation of social deficits. For example, Bauminger, Shulman, and Agam (2003) found that higher-functioning adolescents initiate social interaction with peers more frequently than do their lower-functioning peers; yet, their interactions are often awkward and sometimes even intrusive or offensive. […] high functioning adolescents may be no less affected by social deficits than those with cognitive limitations; rather, their heightened self-awareness and false appearance of being less impaired may actually increase the severity of their social limitations and motivation, perhaps increasing the likelihood of peer rejection and neglect. Consequences of poor social skills often manifest in the form of peer rejection, peer victimization, poor social support, and isolation. Consequently, individuals with ASD generally report higher levels of loneliness and poorer quality of friendships”

“adults with ASD often present with more depression and anxiety than their adolescent counterparts […]. Interestingly, higher-functioning adults with greater intelligence and less autistic symptomatology tend to experience more depression, anxiety, social isolation, withdrawal, and peer victimization […] than lower-functioning individuals. This may be due in part to greater social expectations often placed on higher-functioning adults occurring as a result of placement in less protective and more inclusive settings. With higher-functioning adults with ASD often giving the appearance of seeming more “odd” than disabled by their peers, these individuals may be more susceptible to peer rejection, and consequently greater negative socio-emotional outcomes like depression and anxiety. Furthermore, greater self-awareness about peer rejection and “differentness” more likely found in higher-functioning adults with ASD may also contribute to greater depression and anxiety”

“While social skills training has been utilized for decades and is not a particularly unique or novel treatment for individuals with ASD, the research literature suggests that these approaches have not been tremendously effective in improving the social functioning of individuals on the autism spectrum […] While social skills training has increasingly become a popular method for helping individuals with ASD adapt to their social environment […], a review of the research literature suggests there are very few evidence-based social skills interventions for adolescents and adults with ASD […]. With emphasis on early intervention, most social skills treatment studies have targeted younger children on the autism spectrum, with few clinical research trials focusing on adolescents or adults with ASD. Among the limited number of social skills intervention studies conducted with this population, most have not been formally tested in terms of their efficacy in improving social competence or the development of close friendships, nor do they examine the maintenance of treatment gains months or years after the intervention has ended. […] the literature on social skills training for youth with ASD has been far from encouraging. In a review of the social skills treatment literature, White et al. (2007) identified 14 studies that used group-based social skills training for children and adolescents with ASD. Among these studies, only one used a randomized control group design […] None of these studies examined the maintenance or trajectory of improvement in social competency over time […] Even fewer studies have focused on social skills treatment for adults with ASD. To date, only three published studies appear to have tested the effectiveness of a social skills intervention for adults with ASD […] Only 4 of the 14 studies White et al. (2007) included in their review employed a RCT with a control group. In a similar review of social skills training interventions for children and adolescents with ASD, Rao et al. (2008) found that 9 out of 10 reviewed studies did not use a RCT as their research design. […] Regrettably, most social skills intervention studies are limited in their ability to generalize research findings to other settings and other populations of adolescents and adults with ASD. Two of the biggest offenders to generalization relate to sample size and participant characteristics. Most social skills training intervention studies for adolescents and adults with ASD have small sample sizes […] single-case experimental designs with approximately three or four participants appear to be the most common research design employed within social skills training studies”