The Complete Guide to Becoming an Autism Friendly Professional

Working with Individuals, Groups, and Organizations

Robert Jason Grant, Linda Barboa, Jan Luck, Elizabeth Obrey

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000409468
• Edition: 1
• Topic: Psychologie
• Subtopic: Troubles du spectre autistique

Based on the award-winning Autism Friendly Training Program, created by the non-profit organizationSTARS for Autism, this book empowers the everyday professional to a better understanding andskill in working with, interacting with, serving, and teaching children and adults who have autism spectrum disorder (ASD).

After a thorough explanation ofASD and how it affects children, adults, families, and communities, this guide describes the Autism Friendly Training Program and gives the reader insight into what it means to become autism friendly and to be an autism friendly training presenter. This text will enable those who are neurotypical to gain insight into the person, the stories, and the lives of those with ASD. It is a guide to understanding autism at a deeper level to enable relationship and support processes that define being autism friendly.

Providing the needed information, tools, and confidence to be autism friendly, this book will be beneficial to any and all businesses, organizations, groups, communities, families, and individuals who work with, serve, interact with, teach, parent, and experience life with an autistic person.

1 About Autism

DOI: 10.4324/9781003105633-2

Research, writings, and trainings abound about autism spectrum disorder (ASD), yet many individuals are vastly unaware of what ASD is and how it affects children, adults, families, and communities. Having information easily accessible about ASD provides the opportunity for the lay person to advance their knowledge of autism and be more effective in parenting, working with, and serving those with ASD, and ultimately becoming autism friendly.

The Autism Society of America (2020) described ASD as a complex developmental disability with signs typically appearing during early childhood. ASD affects a person’s ability to communicate and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and early diagnosis with intervention and access to appropriate services lead to significantly improved outcomes. Some of the behaviors associated with autism include delayed learning of language; difficulty engaging or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills and sensory sensitivities.

The Centers for Disease Control and Prevention (CDC) (2020) proposed that ASD is a developmental disability that can cause significant social, communication, and behavioral challenges. There is often nothing about how autistic people look that sets them apart from other people, but autistic individuals may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from severely challenged to gifted. Some people with autism require a great deal of help in their daily lives; others need far less. A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger’s syndrome. These conditions are now all called autism spectrum disorder.

Monteiro (2016) proposed that autistic individuals display a pattern of differences in their development, or style, that affects the way they use language and communicate with others; how they understand and participate in social relationships; the way in which they understand, manage, and regulate emotions; and how they respond to and manage sensory input and preferred areas of interest. Autism can affect an individual in a myriad of ways with social, emotional, motor, developmental, and learning deficits all being present. For those interacting with autistic individuals, it is essential to possess accurate information in order to understand the level of impairment and equally understand the existing skill strengths of the individual.

Autism ranges from mild to severe in terms of impairment on an individual. An individual on the mild end of the spectrum may be able to function without regard in a school, work, or independent living setting and eventually reach a point where they no longer meet the criteria for ASD. An individual on the severe end of the spectrum may be unable to speak and have more serious developmental delays. Even if two individuals have the same diagnosis, no two individuals with autism are alike. One person with ASD may be nonverbal and have a low IQ, while another person with the same diagnosis may have an above average IQ, and yet a third person may be verbally and intellectually precocious. Moreover, often labeling terms “low functioning” and “high functioning” were historically used to describe the person’s placement on the autism spectrum (Exkorn, 2005) and not a reflection that there are only two categories of autism presentation.

A more accurate way to view the spectrum of autism would be to view each person individually and assess each person, plotting them where they currently place in each developmental area. Because, in fact, autistic individuals do not fall into one of two categories – low or high functioning; each person has their own place on the spectrum according to their individual presentation and skill level (Grant 2017a). Because of the range of manifestation and the myriad of issues that can accompany autism, it is essential that those involved take into account the individual and align their views to address the individual’s particular skill needs, strengths, and issues. Do not make assumptions about a person because they have autism. The diagnosis alone does not tell you about them or how the autism affects their life.

Common Presentations in ASD

Several terms exist that are common language related to autism and help define some of the more present features of those with autism. The following terms and definitions are adapted from the National Institute of Mental Health (2020) and Autism Speaks (2020). A complete list of terms related to ASD can be found in Appendix 1.

• Ableism – Discrimination in favor of able-bodied people. The belief that those without a disability or disorder are superior and there is something flawed and wrong with those who do, and they do not deserve equal thought or treatment.
• Atypical – A term that means not typical, or not conforming to the common type: irregular or abnormal.
• Neurotypical – A label for people who are not on the autism spectrum; specifically, neurotypical people have neurological development and states that are consistent with what most people would perceive as typical development.
• Compulsions – The deliberate repetitive behaviors that follow specific rules, such as pertaining to cleaning, checking, or counting. In young children, restricted patterns of interest may be an early sign of compulsions.
• Developmental delay – When a child does not reach his or her developmental milestones at the expected times. It is an ongoing major or minor delay in the process of development.
• Dysregulation struggles – Dysregulation is a term used in the mental health community to refer to an emotional response that is poorly modulated and does not fall within the conventionally accepted range of emotive response. It can be looked at as a person’s inability to manage or regulate their emotions which typically results in various negative behaviors.
• Echolalia – An individual’s automatic repetition of vocalizations made by another person. It is closely related to echopraxia, the automatic repetition of movements made by another person. Echolalia can be present with autism and other developmental disabilities. A typical presentation of echolalia might be as follows: A person is asked “Do you want dinner?”; the person echoes back “Do you want dinner?” followed by a pause, and possibly then a response, “Yes. What’s for dinner?” In delayed echolalia, a phrase is repeated after a delay, such as a person with autism who repeats TV commercials, favorite movie scripts, or parental reprimands.
• Emotional regulation struggles – Emotional regulation is an individual’s ability to notice and respond to internal and external input that elicits an emotion, and then adjust their emotions and behavior to the demands of their surroundings. Emotional regulation is the ability to recognize feelings, understand what is creating the feeling, and understand how to appropriately express or manage the feeling. This can often be a struggle area for those with ASD.
• Eye gaze – Looking at the face of others to check and see what they are looking at and to signal interest in interacting. It is a nonverbal behavior used to convey or exchange information or express emotions without the use of words, which is often a struggle area for autistic individuals.
• Hyperarousal – A state of increased psychological and physiological tension marked by such effects as reduced pain tolerance, anxiety, exaggerated startle responses, insomnia, and fatigue.
• Hyperlexia – Characterized by having an average or above average IQ and word-reading ability well above what would be expected at a given age. It can be viewed as a super ability in which word recognition ability goes far above expected levels of skill.
• Hypoarousal – A physiological state where your body slows down. It may include feelings of sadness, irritability, and nervousness.
• Individualized Education Program (IEP) – An educational plan designed to meet the unique education needs of one child, who may have a disability, as defined by federal regulations. An IEP is intended to help children reach targeted educational goals. IEPs are mandated by the Individuals with Disabilities Education Act (IDEA).
• Joint attention – The shared focus of two individuals on an object. It is achieved when one individual alerts another to an object by means of eye-gazing, pointing, or other verbal or nonverbal indication. An individual gazes at another individual, points to an object and then returns their gaze to the individual.
• Obsessions – The domination of one’s thoughts or feelings by a persistent idea, image, desire, etc. Obsessions are thoughts that reoccur and persist despite efforts to ignore or confront them.
• Perseverating behaviors – Refers to repeating or “getting stuck” carrying out a behavior, a thought, verbalization, etc. (e.g., putting in and taking out a puzzle piece) when it is no longer appropriate.
• Pragmatic speech issues – Refers to language used to communicate and socialize. It is social language skills that we use in our daily interactions with others. This includes what we say, how we say it, our nonverbal communication (eye contact, facial expressions, body language etc.) and how appropriate our interactions are in a given situation.
• Receptive language issues – The comprehension of language; listening and understanding what is communicated. It is the receiving aspect of language. Sometimes, reading is included when referring to receptive language, but some use the term for spoken communication only. It involves being attentive to what is said, the ability to comprehend the message, the speed of processing the message, and concentrating on the message. Receptive language also includes understanding figurative language, as well as literal language. Receptive language includes being able to follow a series of commands.
• Sensory processing struggles – Sensory processing is the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Processing issues exist when sensory signals do not get organized into appropriate responses which create challenges in performing everyday tasks and may manifest in motor clumsiness, behavioral problems, anxiety, depression, and school failure. The eight sensory areas are sight, smell, taste, hearing, touch, vestibular, proprioception, and interoception.
• Social reciprocity struggles – Challenges in the back-and-forth flow of social interaction. The term reciprocity refers to how the behavior of one person influences and is influenced by the behavior of another person and vice versa.
• Spectrum disorder – A term that refers to three disorders that previously existed using the Diagnostic and Statistical Manual (DSM-IV) which included autistic disorder, Asperger’s syndrome, and pervasive developmental disorder NOS.
• Stimming behavior – A repetitive body movement, such as hand flapping, that is hypothesized to stimulate one or more senses. The term is shorthand for self-stimulation. It is repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input. Stimming only creates an issue as it could bother those observing the stimming. For those with ASD, stimming can be a self-soothing experience.
• Theory of mind – The ability to attribute mental states (beliefs, intents, desires, pretending, knowledge) to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one’s own.

ASD Strengths and Abilities

Autistic Individuals can possess the same strengths and talents found in any neurotypical person and often possess unique strengths and abilities due to being autistic. ASD individuals often have challenges to overcome in building routines and relationships that are functional and fulfilling and while much of current research and therapeutic intervention focuses on addressing those challenges, a growing amount of research is showing that people living with ASD may also benefit from unique strengths previously unnoticed by the general population. Those involved and working with individuals with autism should focus on each person and their individual areas of strength and growth, as well as the personality qualities that set them apart and make them unique. The more that is understood about how a person with ASD’s brain is organized differently from a neurotypical brain, the more awareness is gained that a different way of organizing can be valued (Panzano, 2018).

The variety and type of skills and abilities that seem to coincide with ASD are many. Certainly, each autistic person will possess their own set of skills and strengths that can be highlighted and used successfully in a variety of setting and interactions. Table 1.1 illustrates some of the more commons strengths and abilities found in those with ASD.

Table 1.1 Common Strengths and Abilities Found in ASD

Learning to read at an early age (hyperlexia)

Advanced expressive language skills

String visual learners (visual memory recall)

Concrete and logical thinking

Good with schedules, routines, and consistency

Precise and detail orientated

Exceptional honesty and reliability

Follow rules and policies with efficiency

Have an excellent sense of direction

Very punctual

Able to concentrate (single-minded focus)

Statistical Awareness of ASD in the United States

Statistical information about autism spectrum disorder from the Centers for Disease Control and Prevention (2020).

• It is estimated that an average of 1 in 54 children in the United States have ASD.
• Autism is reported to occur in all racial, ethnic, and socioeconomic groups.
• Autism is almost four times more common among boys.
• About 1 in 6 (17%) children aged 3–17 years were diagnosed with a developmental disability, as reported by parents, during a study period of 2009–2017. These included autism, attention-deficit/hyperactivity disorder, blindness, and cerebral palsy, among others.
• Autism tends to occur more often in people who have certain genetic or chromosomal conditions. About 10% of children with autism are also identified as having Down Syndrome, Fragile X Syndrome, Tuberous Sclerosis, and other genetic and chromosomal disorders.
• ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%.
• About 40% of children with ASD do not speak at all. Another 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Other children with ASD may speak but not until later in childhood.
• Almost half (46%) of those identified with autism have average to above average intellectual ability.
• The median age of earliest ASD diagnosis is between 4.5 and 5.5 years, but for 51–91 percent of children with an ASD, developmental concerns had been recorded before three years of age.
• Research has shown that a diagnosis of autism at 18 months can be reliable, valid, and stable. Despite evidence that ASD can often be identified at around 18 months, many children do not receive final diagnoses until they are much older.
• Studies have shown that many parents of children with ASD notice a developmental problem before their child’s first birthday. Concerns about vision and hearing were more often reported in the first year, and differences in social, communication, and fine motor skills were evident from six months of age.
• It...