Autism Spectrum Disorder (II)

I finished the book. Here’s what I wrote on goodreads:

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“Parts of the coverage was complete crap and/or dealt with stuff that was not remotely interesting to me, but other parts were actually really good – which makes the book sort of difficult to rate. In the end I decided to settle on a two star rating, even though I consider some of the recommendations made in the book to be far from ‘okay’.”

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One of those recommendations is to give narcotics to young children with abnormal brains who don’t behave the way the parents would like them to, even though it’s clear that such approaches only deal with symptoms and do nothing to address actual underlying causes (see below: I haven’t quoted extensively from this part of the book, but you should note that I draw different conclusions than do the authors – as I incidentally do in other areas as well..). Ritalin, Adderall, etc.; subjecting young children with brains which are still developing to these types of pharmacological interventions just make my skin crawl, especially as I consider it more or less beyond doubt that part of what is going on here is simply medicalization of normal behaviours.

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

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“Over the years there have been many [behavioural] interventions developed for young children with ASD [autism spectrum disorder]. Thus far, research has not demonstrated that any particular intervention approach is better than the others. […] The amount of empirical support for different treatment approaches varies significantly. However, in general, more empirical support is needed for all approaches, and studies comparing the efficacy and effectiveness of different approaches are sorely lacking. […] many community-based programs may offer eclectic approaches combining elements of various types of interventions within a single program. Although we are beginning to understand better the types of approaches that seem to be successful for young children with autism and their families, we really have no way of knowing the extent to which eclectic, community-based approaches are successful.”

“Impairment in social communication is one of the diagnostic criteria for ASD; therefore, communication is universally affected in individuals with ASD. Social communication includes many nonverbal aspects such as eye gaze and facial expression. […] The degree of affectedness of spoken language can vary widely in individuals with ASD. Sixty to 70% of individuals with ASD are low-verbal or nonverbal [“30% of individuals with autism develop fluent spoken language”], with substantial difficulty with the understanding of spoken language and the ability to use it for functional communication (Fombonne, 2005). However, most children with ASD develop some spoken language skills [“50% of individuals with autism develop some usable spoken language”]. In a study of a large sample of nine-year-olds with ASD, fewer than 15% were classified as nonverbal (defined as using fewer than five words per day) […]. Children with ASD generally have large amounts of immediate or delayed echolalia in which they immediately imitate what someone else says or repetitively use language they have heard from sources such as television, movies, books, or videogames. […] Echolalia is thought to result because children with ASD have an abnormally large “attentional window” for language, resulting in learning larger “chunks” of language. Multiple words are treated as if they were a single word. […] Even high-functioning individuals with ASD may have difficulty with understanding the social use of language because they interpret words literally and have difficulty making inferences. Highly verbal individual with ASD may monopolize the conversation by going on and on about a topic that is interesting to them and failing to give their communication partner a turn to speak. Language proficiency or verbal ability is consistently associated with positive outcomes in social and adaptive functioning for children and adults with ASD.”

“The employment outcomes for individuals with high-functioning autism and Asperger’s disorder are reported to be generally much lower than would have been expected on the basis of their intellectual functioning (Howlin, 2004)” [Here is one relevant quote from the book which I found after a brief skim: “despite having IQ scores well within the normal range (and sometimes reaching quite high academic levels) the majority of individuals in both the Asperger and high-functioning autism groups studied by Howlin (2003) had no close friends, remained highly dependent on their families for support and had low employment status” – unfortunately no specific data was included in that section. This article has some more general numbers dealing with all individuals on the autism-spectrum – one relevant quote: “The unemployment rate for autistic people seems to be about 66%, according to data from 2009, compared to about 9% for the general population. Some estimates, like Bell’s, are even higher: 80-85% unemployment.”]

“People with ASD require predictability, consistency, and structure”

“Most individuals with ASD are diagnosed in early childhood or by school-age. Some young adults are evaluated for symptoms of high-functioning autism or Asperger’s disorder that have not been identified earlier.” [It seems my experience is not unique… No, I did not think it was…]

“Some common characteristics seen in persons with ASD that may lead to difficulty coping include:
• Challenges in interpreting nonverbal language
• Rigid adherence to rules
• Poor eye-gaze or avoidance of eye contact
• Few facial expressions and trouble understanding the facial expressions of others
• Poor judge of personal space — may stand too close to other students
• Trouble controlling their emotions and anxieties
• Difficulty understanding another person’s perspective or how their own behavior affects others
• Very literal understanding of speech; difficulty in picking up on nuances
• Unusually intense or restricted interests in things (maps, dates, coins, numbers/statistics, train schedules)
• Unusual repetitive behavior, verbal as well as nonverbal (hand flapping, rocking)
• Unusual sensitivity to sensations […]
• Difficulty with transitions, need for sameness
• Possible aggressive, disruptive, or self-injurious behavior […]

Situations that often increase anxiety for persons with Asperger’s disorder and lead to difficulty coping include:
• When conversation involves multiple speakers
• Rapid shifting of topics
• Latency of response
• Difficulty in seeking clarification
• Lack of confidence
• Overabundance of irrelevant information”

“Research supporting the use of CBT [cognitive behavioural therapy] in ASD is limited […] At this stage, it remains difficult to make strong conclusions regarding the efficacy of CBT in people with ASD”

“There are currently three well-accepted theories of social development in ASD. Each will be briefly described below.
Theory of Mind deficit
Definition: Difficulty with both awareness and understanding of another individual’s perspective. This was later referred to as “mind blindness.” Research has shown that most typical children learn this skill by age four, while children with ASD learn this much later, between the ages of nine and 14 years.

The social implications of Theory of Mind deficits (Cumine et al., 1998)
• Difficulty predicting the behavior of others, leading to the avoidance of anxiety-producing situations
• Difficulty reading the intentions of others and understanding motives behind their behavior
• Difficulty explaining their own behavior
• Difficulty understanding emotions, their own and those of others, leading to the appearance of lack of empathy
• Difficulty understanding how their behavior affects how others think or feel, leading to an apparent/perceived lack of conscience or motivation to please others
• Difficulty taking into account what other people know or can be expected to know, leading to the appearance of disorganized cognitive processing
• Inability to read and react to the listener’s level of interest in what is being said
• Inability to anticipate what others might think of one’s actions
• Inability to deceive or understand deception
• Poor sharing of attention
• Lack of understanding of social interactions that enable the initiation and maintenance of social relationships […]

Central Coherence deficit
Definition: Difficulty drawing multiple sources of social and environmental information together, causing problems with understanding the larger contextual picture.

The social implications of Central Coherence deficits (Cumine, et al., 1998)
• Idiosyncratic focus of attention
• Imposition of the individual’s own perspective onto others’ experiences
• A preference for the known
• Inattentiveness to new tasks
• Difficulty choosing and prioritizing
• Difficulty organizing themselves, materials, and experiences
• Difficulty seeing social connections, thus causing problems with generalizing skills and knowledge
• Lack of compliance with directives that they do not understand […]

Executive Functioning deficits
Definition: Difficulty with the following executive functioning skills:
• Planning
• Self monitoring
• The ability to inhibit various social responses
• The ability to express behavioral flexibility
• Processing and expressing information in an organized and fluid manner

The social implications of Executive Functioning deficits (Ozonoff, 1995)
Causes difficulties with the following:
• Perceiving others’ emotions
• Imitation of social behaviors
• Pretend play, which is essential to early learning
• Planning, organizing, and prioritizing
• Starting and stopping activities, behaviors, and thoughts”

“Just as there is a spectrum of autism, there is also a range of social motivation. Some individuals are extremely interested in engaging with their peers, but struggle to appropriately initiate or maintain social connectedness. Others with ASD have very little social motivation. These individuals often report extreme anxiety when engaging with people for a variety of reasons. For example, it may be difficult to predict how the people around them will behave and, therefore, individuals on the spectrum may chose to avoid all anticipated anxiety-provoking social environments. […] Many people assume that a lack of social initiation and reciprocal communication indicates that individuals with ASD lack the desire to engage in social interaction. On the contrary, many individuals with ASD lack the skills to be successful socially, yet they desire to be a part of social relationships”

“A recent meta-analysis of 55 single-subject research studies revealed that “social skills programs for children with autism are largely ineffective” (Bellini, 2007).”

“no medication has yet been identified that is capable of treating the core features of ASD […] However, various medications have been used to treat behavioral symptoms in ASD […] Antidepressant medications have been used in the treatment of specific psychiatric comorbid disorders in individuals with ASD. They have also been used to target selected symptoms in ASD such as repetitive preoccupations, preseverative behaviors, and social anxiety. […] The Interactive Autism Network (IAN) reported in 2009 that, out of 5,174 children diagnosed with ASD, 12.2 % of them [were] taking antidepressant medication. […] [The] reports [on antidepressants] have been anecdotal, small case studies, and small designed studies. Investigation has been limited by small sample size, broad age range, and being uncontrolled. The [single] large double-blind, placebo-controlled study of citalopram in 149 children with ASD […] found that there was no significant improvement on multiple measures. […] Antiepileptic medications are typically used for treatment of seizures, which may occur in approximately one third of children with ASD […] Mood-stabilizing antiepileptic drugs (AEDs) have also been used to treat mood instability, agitation and aggression in ASD. Despite the availability of more than a handful of double-blind trials (most of which failed to support the use of AEDs), surveys of psychopharmacological use among children and adults with ASD suggest fairly frequent use. […] It is not uncommon for individuals with ASD to be prescribed more than one psychotropic medication. For example, in the 2005 ASD psychoactive medication survey conducted by Aman and colleagues, 9.8 % of the sample were identified as taking two different drugs; 7.7 % were taking three drugs […] To date, we are unaware of any randomized controlled trials involving the use of polypharmacy in ASD.”

[I also talked about these aspects in the previous post, but I think they’re more clear about the details in the last part of the coverage than they were in the parts on this stuff I covered earlier, so I’ll include these observations as well:] “Considering that deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities, the DSM-IV-TR’s three domains (communication deficits, social deficits, stereotypic interests and behaviors) become two in DSM-5: (a) social/communication deficits, and (b) fixated interests and repetitive behaviors. The newly proposed diagnosis for ASD requires that both criteria to be completely fulfilled. In addition, the current clinical and research consensus appears to be that Asperger’s disorder is part of ASD. Research currently reflects that Asperger’s disorder is not substantially different from other forms of “high-functioning” autism with good formal language skills and good (at least verbal) IQ.”