Karen Levin, Ph.D Speech Therapist, Johannesburg

WHAT IS AUTISM? WHAT IS AUTISTIC SPECTRUM DISORDER?

 

There are a number of definitions of Autism.The most commonly used definition that is provided by the The American Psychiatric Association's Diagnostic and Statistical Manual, Fifth Edition (DSM-5). DSM is the manual used by clinicians and researchers to diagnose and classify the various 'disorders'.

 

In the past, the DSM identified a variety of sub-types, such as autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. In the 2013 revision, these have all been collapsed into one category called ASD. (For those  interested in the differences in the revised version of the DSM definition of ASD, please see http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf).

 

The DSM-5 has a very clear set of diagnostic criteria for ASD. In order to be diagnosed with ASD, individuals  should show difficulties with  social communication AND should have restricted and repetitive behaviours.  Sometimes, people seem to have ASD but they do not fit both criteria. In such cases, we look at whether they show signs of another type of problem known as  social (pragmatic) communication disorder.

 

The diagnostic criteria of the DSM-5 are as follows:

 

A.  Social communication

• People with ASD have persistent difficulties in social communication and social interaction, and these difficulties must occur in many contexts. For example, they may have problems with  ‘social-emotional reciprocity’, which means that they can’t easily have a conversation where they have to take turns, or they cannot share interests, or they cannot easily respond to social interactions. Sometimes they have difficulty initiating social interactions including conversations.

 

• People with ASD have difficulty with in nonverbal communication like difficulties maintaining eye contact with the person they are talking to,  maintaining a good distance from another person while communicating, watching for facial expressions that communicate a lot of meaning. Some may lack facial expression and some might not understand body language.

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• People with ASD have difficulty with social relationships such as making friends, interacting with others, and in adjusting their behaviours to suit different social situations.

 

B.  Restricted, repetitive patterns of behaviour, interests, or activities

• People with ASD must show that they use stereotyped or repetitive motor movements, use of objects, or speech such as lining up toys, playing with the same things over and over, fascination with objects, repeating what one has said to the individual.

 

• People with ASD often like the sameness and do not easily like change. These individuals may not like changed routines, and may become distressed at small changes.

 

• People with ASD may show that they fixate on things or becomes unusually involved with toys, behaviours or activities.

 

• People with ASD show either too much response or too little response to the sensory stimulation in their environment. Some may smell things excessively; others may not cope with loud noises; some cannot cope with social crowds.

 

 

C.      The DSM states that these symptoms must be present in early life, but they may only become apparent as the child get older and is required to interact.

 

D.      These symptoms cause noticeable impairments in social, occupational, or other important areas of the individual’s life.

 

E.       These problems cannot be explained on the basis of other problems like intellectual disability or global developmental delay although ASD sometimes occurs with these problems.

 

Laura Carpenter, PhD, from Washington State University has produced an excellent document which describes the features of autism with lots of examples.

See https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5%28ASD.Guidelines%29Feb2013.pdf

She has identified a number of trends in these criteria:

• Problems with social initiation and response

• Problems with non-verbal communication

• Problems with social awareness and insight as well as the broader concepts of social relationships

• Atypical speech, movements and play

• Preoccupations with objects or topics

• Rituals and resistance to change

• Atypical sensory behaviours

 

How common is ASD?

 

According to the Autism Science Foundation:

 

“ In 2014, the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network reported that approximately 1 in 68 children in the United States has an Autism Spectrum Disorder. This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children. In the 1980’s autism prevalence was reported as 1 in 10,000. In the nineties, prevalence was 1 in 2500 and later 1 in 1000. It is problematic to compare autism rates over the last three decades, as the diagnostic criteria for autism have changed with each revision of the Diagnostic and Statistical Manual (DSM). In 1983 the DSM did not recognize PDD-NOS or Asperger's syndrome, and the criteria for autistic disorder (AD) were more restrictive. ASDs continue to be almost 5 times more common among boys (1 in 42) than among girls (1 in 189) and they are reported in all racial, ethnic, and socioeconomic groups. Studies have been conducted in several continents (Asia, Europe, and North America) that report a prevalence rate of approximately 1 percent. A 2011 study reported a 2.6 percent prevalence of autism in South Korea.”

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David Mandell and Luc Lecavalier (2014)*  describe why it a mistake to use the CDC data above. They have looked at how the figures are derived and they state:“local policies, resources and awareness may drive observed differences in prevalence. We agree these are likely sources of these observed differences. But if they are, then these studies are not measuring true prevalence and should not be advertised as such. They instead measure the extent to which clinicians and educators test for and document the symptoms of autism, regardless of whether the practitioner ultimately assigns that diagnosis.”

 

*Mandell, D., & Lecavalier, L. (2014). Should we believe the Centers for Disease Control and Prevention’s autism spectrum disorder prevalence estimates? Autism, 18(5), 482-484. doi: 10.1177/1362361314538131

 

 

Can autism be diagnosed in the very young child?

 

A number of studies have shown that there are indeed early signs of autism. It is very, very difficult to diagnose ASD in very young children and we have to be very, very cautious when assigning labels. However, there is plenty of evidence to show that there are many warning signs.

 

Osterling & Dawson, 1994, watched videos of first birthday parties of children who had been diagnosed with ASD and found that they had the following features:

• diminished eye contact,

• an inability to orient to name when called,

• the absence of two joint attention behaviors, pointing with a finger to indicate interest in something and showing an object by bringing it to a person.

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Zwaigenbaum et al, 2014, in a review of studies said that little children under 2 years of age who are later diagnosed with ASD showed the following signs:

• (a) visual (e.g., atypical visual tracking and fixation on objects),

• (b) motor (e.g., delayed fine and gross motor skills),

• (c) play (e.g.,limited toy play and repetitive behaviors with toys),

• (d) social communication (e.g., atypical eye gaze and lack of orienting to name),

• (e) language (e.g., delayed back and forthsocial babbling and absence of pre-speech gesturing), 

• (f) general cognitive development(e.g., slower acquisition of new skills).

 

 Wetherby and colleagues found that young children with ASD:

• lacked appropriate gaze and joyful expressions,

• would not respond to their name,

• had difficulty coordinating gaze with facial expressions, gestures, and vocalizations,

• lacked intentional showing of object to someone,

• demonstrated unusual vocal prosody,

• engaged in repetitive movements with objects.

• were likely to exhibit delays in using words and in using objects in conventional play.

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Jeans, L. M., Santos, R. M., Laxman, D. J., McBride, B. A., & Dyer, W. J. (2014). described the following:

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• No difference in amount of babbling at 9 months

• At 2 years, significantly less good at jabbering, naming objects, expressive vocabulary, receptive vocabulary, and listening comprehension

• At 2 years of age,  children with ASD demonstrated less engaging behavior, less positive affect, more intense displays of negative affect, less ability to relinquish materials or accept new materials, less attention to task, less persistence in task, more fearful behavior, more frustration in tasks, and less cooperative behavior or resistance to suggestions

• Children with ASD were less likely to engage their parents and had less sustained attention to objects than children with disabilities and those who were typically developing.

• Children with ASD were less warm and cuddly, less likely to enjoy the company of others, more demanding of parent attention, more upset by separation from parent, more likely to prefer interacting with objects versus other people, more demanding of their own way and quick to cry,and had more unusual behaviors (e.g., quick mood changes, looked dazed or confused) than children with disabilities or who were typically developing.

• 2-year-olds with ASD were more likely than peers to tune out from an activity and were difficult to re-engage, were unable to shift focus easily, and required more time to calm from an upsetting event. At both 9 months and 2 years of age, children with ASD were more often reported to go from whimpering to intense crying than typically developing children but not significantly more than children with disabilities.

• Children with ASD were not more likely to need help falling asleep at either 9-month or 2-year time points than their peers with disabilities or who were typically developing. However, children with ASD were more likely to wake up three or more times per night at the 9-month point (the only timepoint when this question appeared) when compared with children with disabilities and with children who were typically developing.

• At 2 years of age, the children with ASD had significantly lower scores on both Mental/Cognitive Scale Scores and Motor Scale Scores than children who were typically developing.

 

 

The American Academy of Pediatrics lists some of these early signs: 

 

Social Differences

• Resists snuggling when picked up; arches back instead

• May have temperament differences during infancy, such as being described as a very quiet or very fussy baby

• Makes little or no eye contact

• Shows no or less expression in response to parent’s smile or other facial expressions

• May avoid following a parent’s gaze or finger to see what parent is looking at or pointing to

• No or less pointing to objects or events to get parents to look at them

• Less likely to bring objects to show to parents just to share his interest

• Less likely to show appropriate facial expressions

• Difficulty in recognizing what others might be thinking or feeling by looking at theirfacial expressions

• Less likely to show concern (empathy) for others

• Has difficulty in establishing and keeping friendships

Communication Differences

• Says no single words by 15 months or 2-word phrases by 24 months

• May repeat exactly what others say without understanding its meaning (parroting or echolalia)

• Responds to sounds (like a car horn or a cat’s meow) but less likely to respond to name being called

• May refer to self as “you” and others as “I” (pronoun reversal)

• Shows no or less interest in communicating

• Less likely to start or continue a conversation

• Less likely to use toys or other objects to represent people or real life in pretend play

• May have a good rote memory, especially for numbers, songs, TV jingles, or a specific topic

• May lose language milestones, usually between the ages of 15 and 24 months in some children (regression)

Behavioral Differences (Stereotypic, Repetitive, and Restricted Patterns)

• May rock, spin, sway, twirl fingers, or flap hands (stereotypic behavior)

• Likes routines, order, and rituals

• May be obsessed with a few activities, doing them repeatedly during the day

• More likely to play with parts of toys instead of the whole toy (for example, spinning wheels of a toy truck)

• May have splinter skills, such as the ability to read at an early age but often without understanding what it means

• May not cry if in pain or seem to have any fear

• May be very sensitive or not sensitive at all to smells, sounds, lights, textures, and touch (sensory processing differences)

• May have unusual use of vision or  gaze (for example, looks at objects from unusual angles)

• May have unusual or intense but narrow interests

 

Interventions

 

There are hundreds of approaches to intervention with people with ASD, some of which are downright unethical and which promise all kinds of unrealistic outcomes. On the other hand, there are also excellent options that are available.

 

We can classify interventions into a few types:

 

1. Educational - these are the programs or aproaches that are offered in the schools.

 

2. Behavioural - these are interventions that aim to change behaviours. They generally are programmes that require many hours of input  with the individual. In addition, often they require special training. Examples include 

 

• Applied behaviour analysis – also known as ABA – is a  way of observing a person,  identifying  changes that one wishes to make in the person's behaviour, and then using principles of operant conditioning to change the behaviours.

• Incidental teaching is a form of teaching in which a person intervening with an individual with ASD works with naturally occurring incidents or situations

• Relationship Development Intervention – also known as RDI – is a parent-led approach which focuses on the individual's behaviour with regard to flexibility, taking another person's perspective, and regulating emotions.

• TEACCH –  Treatment and Education of Autistic and Communication-Handicapped Children – is the term given to describe the various activities undertaken by Division TEACCH, a  community-based programme of services for children and adults in North Carolina, USA.

• etc.

 

 

3. Profession-specific - the professionals such as occupational therapists, speech therapists and physiotherapists use their training to work on communication and/or sensory-motor issues.

 

4. Alternative - these are alternative methods such as diet modification, homeopathy, horse riding, music therapy, dance therapy that may or may not be based on traditional scientific principles.

 

5. Medical - some practitioners treat clients medically

 

A publication that has examined over a thousand research studies is “Evidence-based practices for children, youth, and young adults with autism spectrum disorder”. This is a very detailed overview of the various interventions.  See

http://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/2014-EBP-Report.pdf

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A new article published by Japanese researchers in December 2017 (See  http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0186502) reviews interventions for people with ASD. concluded, "The small number of studies included in the present study limited the ability to make inferences when comparing the three models and investigating the strengths and weaknesses of each type of intervention with respect to important outcomes. Since the outcome of ‘reciprocity of social interaction towards others’ could be a dependent variable that might be context-bound to interactions with the child’s parent, we cannot conclude the interventions for pre-school children with ASD have significant effects on a generalized skill to engage in reciprocal interactions with others. However, the outcomes of ‘reciprocity of social interaction towards others’ and ‘parental synchrony’ may be promising targets for interventions involving pre-school children with ASD.".

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An excellent source of information on the various types of interventions can be found at http://www.researchautism.net/autism-interventions

 

My advice to parents of children who are diagnosed with ASD is to be very critical, sceptical and questioning of every suggestion made with regard to intervention because of the inordinate number of unethical, misleading interventions out there. You can and should ask the professionals questions. As with any type of communication problem, the intervention that is selected must fit a few criteria:

 

• It must be based on science. It must be described in the scientific literature, and its theoretical basis must be justified. It must be researched properly.

• It must be transparent so that there are no secrets that render it controversial.

• It must be tailored to the particular needs of the individual with ASD and his or her family.

• The cost must be warranted ... of course there are no guarantees with any intervention, but if an intervention is expensive, the expense must be justified.

 

 

Intervention by the speech therapist

The American Speech and Hearing Association states:

"Integral to the diagnostic criteria, all individuals with ASD are challenged in the area of social communication. Thus, many individuals with ASD have difficulty acquiring the form and content of language and/or augmentative and alternative communication systems, and all have needs in acquiring appropriate social use of communication. Therefore, problems in use of language and communication are overarching because ASD is primarily a social communication disability. These challenges result in far reaching problems, including difficulties with joint attention, shared enjoyment, social reciprocity in nonverbal as well as verbal interactions, mutually satisfying play and peer interaction, comprehension of others' intentions, and emotional regulation. Due to the nature of ASD, family members, peers, and other communication partners may encounter barriers in their efforts to communicate and interact with individuals with ASD. Therefore, the speech-language pathologist's role is critical in supporting the individual, the environment, and the communication partner to maximize opportunities for interaction in order to overcome barriers that would lead to ever-decreasing opportunities and social isolation if left unmitigated."

 

Speech therapists take a broad view of communication and work to achieve various goals with our clients and their families.

 

• All individuals with autism communicate differently and require individually designed intervention

• The aim of speech therapy is to work towards true communication, which we define as interaction between the autistic person and his or her communicative partners in such a way that both parties recognise one another as communicative beings who share authority in all interactions. Communication can be verbal or non-verbal.

• We work with our clients on their understanding of verbal and non-verbal language

• We work with our clients to initiate communication, and maintain it.

•  We aim, where possible, to teach people with autism oral language skills including language structures (e.g. vocabulary, sentences)

• We aim, where possible, to provide people with a means of communication that is verbal or non-verbal.

• Speech therapists aim to help people with autism, where possible, to produce intelligible speech.