Adolescents and Adults with Autism Spectrum Disorders (2)

I read the rest of the book, but I didn’t particularly like the last part either – I gave the book one star on goodreads. A couple of the last chapters were sort of okay, but they were not good enough for me to change my mind about the book in general.

…

“Whether the child who is suspected as being on the autism spectrum is “high” or “low” functioning, it is important to ascertain a sense of their global functioning particularly in the area of ADLs [activities of daily living]. Many professionals erroneously assume a “highfunctioning” individual with perhaps, Asperger syndrome functions in the community at an age appropriate level. Professionals are often beguiled by “Aspies” vocabularies and intelligence. They may think it is unnecessary to conduct an assessment of the person’s adaptive functioning because his or her IQ is in the normal to superior range. However, because of impairments in social communication, executive functioning, and the ability to read facial expressions and non-literal communication, individuals with Asperger syndrome can have extreme difficulty functioning on a daily basis. […] many are diagnosed in adulthood […]. For a community-based sample in Canada, 48 % of individuals with “high-functioning autism” and AS were not diagnosed until they were 21 years or older (Stoddart et al., 2013). […] In higher-functioning individuals with average to above-average IQs, there is often a “cloak of competence” […] or an assumption of competence when it comes to […] basic life skills. Adults who are highly accomplished in their work may have basic problems with organization at home, or for tasks which are of less interest […] outcome is variable, as some individuals with very high IQ face significant challenges in adulthood. […] Depressed mood may be particularly common in high functioning adults, who have insight into their social and adaptive difficulties, and who may desire to make changes but have limited success in doing so”

“higher functioning individuals who have a considerable vocabulary may still have a [speech] disability. Individuals with Asperger syndrome for example have an impressive vocabulary even at a young age, but they have impairments in the semantics and pragmatics of speech. They may also have issues with prosody that need to be assessed and addressed.”

“Understanding which variables predict adult outcomes in ASD is a crucial goal for the field, but we know little about what variables predict different outcomes. […] Longitudinal studies of ASD from childhood to adulthood have consistently yielded only two useful prognostic factors for adult outcome in ASD. A childhood IQ score in the near-average or average ranges (i.e., ≥70) and communicative phrase speech before 6 appear necessary but insufficient for a person to access a moderate level of independence in adulthood […] Individuals having these childhood characteristics have widely varying adult outcomes, so exhibiting these characteristics in childhood is no guarantee that a person will achieve adult independence. The predictive utility of other childhood variables has been examined. Findings regarding severity ratings of childhood ASD symptoms have been mixed”

“Almost all studies that have examined developmental trajectories for individuals with ASDs show that these individuals exhibit reductions in autistic symptoms over time […] Symptoms of ASD tend to diminish both in severity and number. The most improvement has usually been recorded for participants with IQ scores in the normal range and the least severe symptom presentations at their initial evaluation […] Published reports also indicate that there are subgroups of individuals with ASD who experience marked change in the course of their development at some point, either as deterioration or dramatic improvement. […] This phenomenon was […] noted in a Japanese sample of 201 young adults, although marked improvement was also described […]. Roughly one-third of this sample experienced a marked deterioration in behavior, most often occurring after age 10. The change occurred after age 20 in six cases. Declines were characterized by specific skill regressions or by increases in hyperactivity, aggression, destructiveness, obsessive behavior, or stereotyped behaviors. Notable improvements in the developmental course occurred in 43 % of the sample […] Improvements occurred between the ages of 10 and 15 years for most participants. No predictable antecedents to changes in the developmental course have been noted in previous studies. […] Significant improvements in verbal communication abilities have been reported on the ADI-R, although findings related to nonverbal communication have been mixed.”

“While not a core diagnostic domain at this time, difficulties processing sensory information are common in people with ASD and considered an associated feature […]. In a study of sensory processing difficulties in 18 adults with ASD and normal-range IQ scores aged 18–65, Crane, Goddard, and Pring (2009) found that, compared to matched controls, adults with ASD reported more experiences with low registration (i.e., responding slowly or not noticing sensory stimuli), sensitivity to sensory input, and avoiding sensations. All but one person reported extreme scores in at least one area.”

“Outcome classifications usually include five nodes ranging from Very Poor (i.e., the person cannot function independently in any way) to Very Good (i.e., achieving great independence; having friends and a job). There is considerable variation in outcomes for samples studied, but in general outcome for approximately 60 % of individuals with ASD is considered Fair, Poor, or Very Poor […]  Most outcome studies indicate that few adults with ASD develop significant relationships
outside of their families of origin. […] It is [however] likely that the majority of adults with ASD who also have normal range intellectual abilities have not been diagnosed, and many of these individuals may have married or developed other close relationships outside of their families of origin. […] In terms of outcome studies to date, very few adults with ASD have been reported to have successful, long-term romantic relationships […]. Some outcome studies indicate that no participants or only one participant has been involved in a romantic relationship […]. One-third to half of adults in outcome studies have friendships outside of their families […]. Almost 75 % of family members reporting on the sample described by Eaves and Ho (2008) indicated that they enjoyed good to excellent relationships with their relative with ASD. Similar results have been found in other studies of adults with A[S]D […]. Females have reportedly experienced greater success with peer relationships than males […]. Between 10 and 30 % of adults in recent studies (Eaves & Ho, 2008; Engstrom et al., 2003; Farley et al., 2009) had experience in a romantic relationship. […] Roughly one-third of adults with normal-range IQ scores in outcome studies are employed, inclusive of regular, full-time work, part-time or volunteer work, supported employment, and sheltered employment. […] Roughly 40 % of participants in outcome studies have been prescribed medications for psychiatric conditions or to control behavior”

“Ganz (2007) estimated the societal costs of ASD across the lifespan, calculating a total per capita societal cost for an individual with ASD at over $3 million. The most expensive period was early childhood, at which time many children are undergoing diagnostic studies, receiving medical treatments, and participating in intensive intervention programs. Costs for young adults (ages 23 through 27) were estimated to be $404,260 (in 2003 dollars). Ganz calculated direct medical, direct nonmedical, and indirect costs. Direct medical costs are expenses incurred in the course of medical care, and these tended to be lower for adults than other age groups. Direct nonmedical costs include adult support services and employment services, as examples. This life period often involves much trial-and-error while families attempt to identify services that will result in a good fit with their son or daughter. Direct nonmedical costs were higher in this age group than any other, estimated at $27,539 over this 5-year period. Indirect costs mainly comprise lost productivity costs, as when family members must leave work or reduce hours in order to support their family member. These costs are also the highest for this age group because adult children may remain dependent on their parents, but are also technically old enough to enter the workforce. Therefore, lost productivity costs are calculated for parents as well as the young adult, a phenomenon unique to this life period. Societal costs diminish as adults with ASD age, so that someone aged 48 through 52 incurs less than half the cost of someone aged 23 through 27.”

“Virtually nothing is known about ASDs in late life. Questions at the forefront about this period are related to brain changes, the transfer of care from parents to other family members or human service agencies as parents become unable to care for their adult children through illness or death, and the adequacy of existing services to care for this population. There are many questions about the nature of changes in the brain in adults ASD as they approach old age. We do not know whether or not they experience memory problems at a similar rate to adults in general population, nor whether they may experience earlier onset of dementia and increased rates of dementia”

…

Chapter 15 was actually sort of okay and deals with a community survey conducted in Britain where some researchers tried to figure out how many autistics are out there, undiagnosed, in the community, and how well those individuals are actually doing compared to other people. Instead of going into the details of that chapter I’ll just point you to the original paper they describe in the text. The paper behind chapter 16, which I’ll talk a little bit about below, is available here.

…

“While evidence is accumulating regarding the benefits of psychosocial interventions for adults with ASD, there have been no systematic reviews or meta-analyses conducted to summarize the cumulative evidence base for these approaches. Therefore, we conducted a systematic review to examine the evidence base of psychosocial interventions for adults with ASD […] An extensive literature search was conducted in order to locate published studies documenting interventions for adults with ASD […] These searches revealed 1,217 published reports. Additionally, references of relevant studies were examined for additional studies to be included in this research. […] From these abstract searches, studies were then examined and included in this review if they (1) were conducted using a single case study, noncontrolled trial, non-randomized controlled trial, or RCT design that reported pretest and post-test data, (2) reported quantitative findings, (3) included participants ages 18 and older, and (4) included participants with ASD. In total, 13 studies assessing psychosocial interventions for adults with ASD were found. […] The included studies were diverse in their methodologies and represented numerous categories of interventions. A total of five were single case studies, four were RCTs, three were non-randomized controlled trials, and one was an uncontrolled pre–post trial. Six studies evaluated the efficacy of social cognition training, five studies evaluated the efficacy of applied behavior analysis (ABA) techniques, and two studies evaluated the efficacy of other types of communitybased interventions. […] All of the included ABA studies were single case studies. […] All ABA studies reported positive benefits of treatment, although the maintenance of this benefit varied between studies. Effect size was not reported for the ABA studies, as findings were based on a single subject. […] As a whole, the studies identified had modest sample sizes, with the greatest including 71 participants and over three-quarters of studies having less than 20 participants.”

“there are significant limitations to the current evidence base. While we conducted an extensive search of the literature available on psychosocial interventions for adults with ASD since 1950, only 13 studies were found. Due to the small number of studies, we were unable to conduct a meta-analysis of the adult ASD literature. As a consequence, clear estimates of effect size for different types of psychosocial interventions are not available. Effect sizes should also be interpreted with caution, especially for studies with small sample sizes, which comprised the majority of studies. The incongruent nature of outcome measures used in some of the included studies also indicate that the reader should take caution before generalizing the results of included studies. For instance, García-Villamisar & Hughes (2007) used cognitive functioning outcomes, such as the Stockings of Cambridge and Big Circle/Little Circle tasks, to measure the effectiveness of a supported employment program but did not report outcome data on the number of adults with ASD who were employed as a result of the program.”