What We Know About Autism Spectrum Disorder Today
Leo Kanner, an American child psychiatrist, first used the term, “infantile autism” in 1943 to describe children who, he believed, were happiest alone, living in a shell and “oblivious” to everything around them.
Today, as a result of research and better understanding, many view autism not as “something ‘wrong’ with you but a different way of interacting with the world around you” (Sarah, Autism Speaks Canada ambassador).
Definition of Autism:
The Diagnostic and Statistical Manual of Mental Disorders Fifth Edition, DSM-5, defines Autistic Spectrum Disorder as a neurodevelopmental disorder characterized by impairments in social communication and social interaction, and repetitive patterns of behaviour.
These symptoms are present from early childhood (usually recognized by 12-24 months of age), and are persistent. Many children with ASD also have intellectual impairment and/or language impairment. Some children begin to develop language but “plateau” or even lose acquired skills, during their second year of life.
All children with ASD have profound difficulties with organization and change, even those with above average intelligence. Anxiety and melt downs are very common. Children with autism have attention which is “overly focussed or easily distracted”, and they are frequently hyperactive and impulsive. For this reason, children with autism are often diagnosed with ADHD, as well.
Autism is a spectrum disorder which means there is considerable variability in the degree to which individuals are affected. Those with severe autism may have significant cognitive disability, sensory problems (sensitivity to light, noise, and texture), and extremely repetitive and unusual behaviours, while those with mild autism may seem to have merely “personality differences making it challenging to form relationships” (Autism Canada).
Children with greater intellectual ability and who develop functional language by age 5 have a much better prognosis than children with intellectual disability and ongoing language impairment.
It used to be thought that all the children on the spectrum invariably faced a bleak future but, not only do most children improve over time with educational and social programs but some children develop skills and capacities such that they no longer fit the diagnostic criteria as adults. The earlier, more intensive, and more comprehensive the treatment interventions…the better.
Heritability estimates for ASD are as high as 90%, based on twin studies (DSM-5). Older parents, low birth weight, and fetal exposure to some drugs or environmental toxins may increase the risk of ASD. 15% of cases of ASD “appear to be associated with a known genetic mutation” while the remainder appears to be the result of many contributing genes.
According to the American Psychiatric Association, almost 1% of children worldwide are affected by ASD. Children from all economic and racial backgrounds are affected, although children from more advantaged societies and communities are more likely to be diagnosed. Children in less developed countries and poorer communities are more likely to be diagnosed with intellectual disability.
Until recently, it was thought that boys are affected more than girls by a ratio of 4:1 but researchers now believe that, because girls are better at mimicking social language and social interactions, they are often overlooked.
Autism Canada’s Early Signs of ASD:
Begins to develop language then loses it, or doesn’t acquire language at all
May appear deaf, respond unevenly or not at all to sounds
Difficulty consoling during transitions (tantrums)
Difficulty sleeping / wakes at night
Does not point and look
Failure to bond (e.g. child is indifferent to parent’s presence)
Self- restricted / selected diet
Limited imaginative play
Not interested in playing with other children
Chronic gastrointestinal problems
Repeated infections
Underlying Deficits
According to Sally Rogers, PhD, Geraldine Dawson, PhD, and Laurie Vismara, PhD., authors of, An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn (2012), children with ASD have three fundamental problems:
They have difficulty sharing their experiences with others, coordinating joint attention (eye gaze) with others, and using social smiles, facial expressions and gestures to express and share feelings (they have feelings, they don’t know how to share feelings).
They have difficulty imitating others and engaging in imaginative and social play with toys
They are less motivated to please others/pay attention to others
The authors argue that, because children with ASD are less skilled in sharing their experiences with others and imitating others, and less motivated to develop these skills (to please others), they “miss out on many basic learning opportunities that are present in the daily caregiving and play that most children experience almost constantly.”
These “missed opportunities are reflected in their developmental delays –in language development, gestural development, self-care skills, and social play that are part of the profile of early autism.” (p. 193).
Let’s imagine for a moment what it might be like to be an infant born with autism:
He lives in a world with irritating sounds and has trouble ignoring his mother who is smiling, cooing, and touching him. He likes the shadows on the wall and the light bulb that glows and never tires of the mobile that twirls around and around above his head.
He’s now four months old and occasionally notices a finger pointing here and there, but he doesn’t know what it’s pointing at, doesn’t care to know, and looks the other way. He’s curious about the light bulb and mobile but nobody else seems interested. This is a strange and lonely place. His mother, the big shadow, emits so many sounds, strange sounds, but he has no idea what they mean. They make no sense.
He is now two years old and anticipates that meals and baths and walks have a certain rhythm and order and he likes that. Its predictable, and predictable is good. When things happen out of order, or in a different way, it’s scary and he cries and flails and can’t be soothed. He doesn’t understand why there is a change in the routine because he doesn’t have language.
He is now three and he loves his toys. He loves Lego. He lines up the pieces in a particular order that never changes and he loves fruit but nothing else and he wears one pair of pajamas and none other. He tries as hard as he can to understand and take charge of his environment which is unpredictable and strange.
Rogers et al, argue that, because children with ASD can’t benefit from the more implicit or subtle learning experiences that occur naturally for other children, learning opportunities need to be more explicit for children with ASD. Similarly, because children with ASD are not as motivated to please others, rewards have to be tailored to their more unique desires and concerns, whether it be a token, a toy, or a sweet. Behavioural Analysis is commonly employed to investigate the child’s motivations and intentions and explore responses which are rewarding and meaningful.
Let’s explore one of the fundamental difficulties experienced by children with ASD, which is coordinating joint attention.
The authors write: “Joint attention involves the ability to shift eye contact or gaze between a social partner and an object or event, and sharing feelings about the object or event through facial expressions. Children use “three main gestures to share attention-giving, showing, or pointing to the object or event.”
Because children with ASD “have difficulty learning to shift their gaze from people to objects easily and frequently,” caregivers need to sit directly in front of the child during all activities, draw attention to the caregiver’s face and eyes, teach her/him to give, show, and point to objects (p. 222-223).
Nonverbal communication gestures such as pointing, clapping, jumping, banging, and stomping need to be exaggerated and fun in order to engage, motivate, and make connections, with the goal of increasing shared experience (p. 153-154). Tangible rewards for participation and communication will be required!
Language Acquisition:
The reason that joint attention and shared experience are so important is because they are the underpinnings of language acquisition. For example, caregivers and children must agree that the thing they are looking at and pointing to, which is cylindrical and has a handle and is used for drinking, is called a “cup.”
Every day, mom and baby look together at this object and agree that they will call it a “cup.” If the baby isn’t interested or isn’t looking, he will miss that his mother is referring to the cylindrical object and naming it “cup.” It’s even more complicated when something nontangible needs to be labelled. Let’s take “smile.”
A smile is a facial expression involving an upturned mouth, downturned and shining eyes, which signals amusement and pleasure. For an infant to be able to understand the word “smile” and know what it looks like, and what it means, requires him to experience amusement and pleasure, share it with his caregiver, see her amusement and pleasure, listen to her say (over and over) “are you smiling at me?” and finally, to associate the expression on his face, the emotion/response in his nervous system, and the reaction of his caregiver with the word SMILE.
This takes hundreds, if not thousands of repetitions, and if the infant can’t participate in the mutual back and forth negotiations about this “smile” thing, he will not get it. The most commonly understood (misunderstood) characteristic associated with autism is that the individuals don’t get emotions!
What are some of the myths about ASD?
In addition to the myth that children with ASD cannot learn to adapt or improve their social functioning is the myth that children on the spectrum don’t want to have relationships with others. Children vary tremendously in this respect from those who avoid people to those who really “want to be a part of the social world but find it confusing and overwhelming (Bernier et al., p. 55).
It is also a myth that individuals with ASD are not interested in sex or romantic relationships. Many are. However, because they have difficulty picking up on social cues, many teens and young adults on the spectrum get into a lot of trouble by acting out sexually, making unwanted advances or not understanding consent adequately. Girls on the spectrum are particularly vulnerable to sexual abuse and sexual bullying.
Children with autism need a lot of very explicit instruction about sexual function, sexual practices, hygiene, consent, birth control, and understanding sexual communication. While they need more instruction than other children and teens, they tend to get much less instruction than other children and teens because of the myth.
Diagnosis:
There is widespread agreement that early diagnosis and treatment are critical for children to achieve their potential, both socially and intellectually. The reason language acquisition by age 5 years is considered so significant in terms of prognosis is that almost all learning is language based in our society and children without language are hugely compromised. Moreover, there seems to be a window of time for the acquisition of language such that children who don’t develop it by age five, rarely develop it at all.
The Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) is a screening tool which can be used by family doctors and paediatricians. If the results of the screening tool suggest that the child has ASD, a specialized team will confirm or disconfirm the diagnosis and determine whether, and what treatment, may be effective.
Management and Treatment:
Most approaches focus on understanding and changing the maladaptive behaviours of children with autism, for example, flapping, spinning, and self-harm, and teaching social behaviours, such as eye contact and imitation.
Applied Behavioural Analysis (ABA) is the most intensive intervention with 40 hours of training per week, both in the classroom and in the community. Intensive Behavioural Intervention (IBI) which is based on the principles of ABA, is delivered individually or in small groups, and may range from 20-40 hours per week.
Originally, these behavioral interventions were strictly applied with all children, and both rewards and punishments were employed. Today, the intervention is tailored to each child, only rewards are employed, parents are involved, and relationship building and interaction are as much the focus of the treatment, as changing behaviour.
There are no medications which reduce the core symptoms of autism, that is, the deficits in reciprocal communication. Medications are used to treat related problems such as anxiety, and aggression, and comorbid conditions like ADHD.
Adults living with Autism:
Over time, those with ASD tend to develop better verbal communication, emotional responsiveness, and eye gaze, and show a decrease in withdrawal, repetitive behaviours, and hand flapping. Those with intellectual impairment show less improvement. Most continue to have anxiety and significant difficulties with daily living such as planning, organizing, and hygiene.
Looking to the Future:
There is new research that suggests parents and other caregivers can learn to use many treatment strategies as well as trained therapists, and that “when parents use these strategies, the quality of their interactions with their children improves and the children become more socially engaged and learn to communicate better with others” (Rogers et al., p. 4).
Despite the general improvement over time shown by those with ASD, research on adults living with autism shows that many continue to need ongoing assistance to manage their daily lives. There has been much research to explore best treatment interventions for young children with ASD but much less to investigate best practices with those individuals as they attempt to navigate adolescence and adulthood. Identifying and implementing optimal supports at each stage of development will allow more people diagnosed with ASD to lead meaningful and productive lives.
Resources:
Autism Canada www.autismsocietycanada.ca
Autism Speaks Canada: www.autismspeaks.ca
Raphael A. Bernier, PhD, Geraldine Dawson, PhD, and Joel T. Nigg, PhD, What Science Tells Us About Autism Spectrum Disorder: Making the Right Choices for Your Child, The Guilford Press, New York, 2020.
Sally J. Rogers, PhD, Geraldine Dawson, PhD, and Laurie A. Vismara, PhD., An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn, The Guilford Press, 2012.
About the Author
Janet Morrison, M.A., C. Psych Assoc. is a psychological associate in private practice and a senior lecturer at the Factor-Inwentash Faculty of Social Work, University of Toronto. Over the past 30 years she has assessed, treated and supervised treatment of children in long-term care, as well as, consulted for Children's Aid Society and group homes across Ontario.
Listen to our podcast episode on ASD: Episode 7 | What We Know About Autism Spectrum Disorder Today